Simplify Cancer

Dr. Wendy Lichtenthal You cannot choose cancer, but you can choose what comes next – Dr. Wendy Lichtenthal Wendy helps people who go through cancer and I love the unique perspective in understanding your cancer experience to create the new normal that helps you move forward in life. Here is what we cover in our discussion today: Why you don’t want to remove anxiety around cancer Making room for your cancer experience How to be kind to yourself through worry Your own path to living with changes and uncertainty Why we must grieve for what we lost The choice to make meaning beyond cancer Links Dr. Lichtenthal at Memorial Sloan Kettering Cancer Center Wendy Lichtenthal (Twitter) And check out my brand new book on thriving in times of uncertainty: Don't Forget To Sign Up for Your 7 Day Challenge to Take Your Life Back After Cancer!People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today: #btn_1_5095f450e13754607e74fd13894c14a2 .text {font-size:16px;color:#ffffff;font-weight:bold;}#btn_1_5095f450e13754607e74fd13894c14a2 {padding:5px 25px;border-color:#000000;border-width:1px;-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;background:#38b6ff;background:-webkit-gradient(linear, left top, left bottom, color-stop(0%, #38b6ff), color-stop(100%, #38b6ff));background:-webkit-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-moz-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-ms-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-o-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:linear-gradient(to bottom, #38b6ff 0%, #38b6ff 100%);filter:progid:DXImageTransform.Microsoft.gradient(startColorstr=#38b6ff, endColorstr=#38b6ff, GradientType=0);box-shadow:0px 1px 1px 0px rgba(0,0,0,0.5);}#btn_1_5095f450e13754607e74fd13894c14a2 .gradient {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .shine {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .active {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .hover {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}Sign Up Today I will never give out your email - view my Privacy Policy

Isn’t it weird how everyone talks about mindfulness, but no one seems to know how to put it to work it in everyday life? And how do you even know that you’re actually doing it? Many times I found myself staring into space in an attempt to find calm and relax, but no matter how hard I tried, my head swelled up with noise and random thoughts… Instead of enlightenment or clarity, I wound up feeling stupid and inadequate. Is this what mindfulness really is – another fad when every day we struggle with distraction and overwhelm? I tossed mindfulness out to the waste bin until… One fine day I stumbled upon the book by Dr Ronald Siegel and it was mindfulness as I’ve never seen it before – grounded in the challenges of daily life and practical approach to making it work for you and your way of living. Links Dr Ron Siegel Website And check out my brand new book on thriving in times of uncertainty: Don't Forget To Sign Up for Your 7 Day Challenge to Take Your Life Back After Cancer!People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today: #btn_1_5095f450e13754607e74fd13894c14a2 .text {font-size:16px;color:#ffffff;font-weight:bold;}#btn_1_5095f450e13754607e74fd13894c14a2 {padding:5px 25px;border-color:#000000;border-width:1px;-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;background:#38b6ff;background:-webkit-gradient(linear, left top, left bottom, color-stop(0%, #38b6ff), color-stop(100%, #38b6ff));background:-webkit-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-moz-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-ms-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-o-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:linear-gradient(to bottom, #38b6ff 0%, #38b6ff 100%);filter:progid:DXImageTransform.Microsoft.gradient(startColorstr=#38b6ff, endColorstr=#38b6ff, GradientType=0);box-shadow:0px 1px 1px 0px rgba(0,0,0,0.5);}#btn_1_5095f450e13754607e74fd13894c14a2 .gradient {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .shine {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .active {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .hover {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}Sign Up Today I will never give out your email - view my Privacy Policy

How do you make sense of life after cancer? What are you even supposed to do with yourself after all of this? And how do you go on living and living well knowing that death is real? This is Joe Bakhmoutski and welcome back to the Simplify Cancer Podcast! I have a fascinating conversation for you today with the one and only, the incredible Dr. William Breitbart, the founding father of psycho-oncology. Here is what we cover in our discussion today: How self-love is crucial to human experience Dealing with existential guilt Meaning centered psychotherapy for cancer patients Why nobody loves perfect people On living a meaningful life Being connected through love And much, much more! Links The Redeemer of Grand Street by William Breitbart, M.D. And check out my brand new book on thriving in times of uncertainty: Full transcript: William:                    Off the bat, I had thyroid cancer when I was 28 or maybe 29. I don’t remember how old I was. Yes, 28. In the middle of my medicine training. It was a rather quick experience. Surgery, boom, bang, out. That’s not what brought me into the field of psychiatric oncology. That’s not what brought me to Sloan Kettering. Believe it or not. It had more to do with my parents’ experience of being holocaust survivors as very young teenagers hiding in the forest and things like that and my experience growing up in that home with them. The story of all of that. What my parents needed me to be in the world, so that it would justify the fact that they survived. That’s a lot of what drove me. If you Google search me and you look for something. I edit a journal, and international journey called: Palliative and Supportive Care. If you Google search my name and the title of an essay called the redeemer of grand street. You’ll hear my life story. You’ll hear that story. You’ll read that story. With all the typos I put in. Joe:                             I will absolutely do that. That’s so fascinating, Bill. I totally get that what you’re talking about with what you wanted to be in the world from your parents. I have a similar sense of growing up with my grandparents who were also holocaust survivors. Both of them were medical specialists who completely went into this world of basically saving people. Just wanting to be that change. Yes, I think I totally understand that what you felt you had to be something in the world that made a difference in some way. William:                    To make a very specific difference, yes. There were a whole group of I would say about 30 families on the lower east side of Manhattan who were survivors from the same general area of Poland, which is now Ukraine, whatever. From towns like Lvov, Bialystok, Turka. Places like that. They all organized together into what they called a Turka young men’s benevolent society. The main function of that society was to make sure everyone had a cemetery plot. We have a big section of Jewish cemetery out in Queens. Everybody from the lower east side that I grew up with, nobody had relatives, so we were all each other’s relatives. My Bar Mitzvah, these were the people who came. The same thing with that. The main practical purpose was having cemetery plots. Obviously, it was a network to be able to stay connected. My mother in particular, my father was always working very hard. My mother in particular was a very philosophical person and a very emotionally expressive, thoughtful person. I think if she had the ability to have had her education not interrupted so seriously at a young age, she probably would have gone into something like medicine or something like that. She felt so guilty about surviving and everyone else dying. Everyone of her family died, that she would come up to me. Giving me and my younger brother breakfast every morning, she’d ask, why am I here? The more complete question was, why am I here and everyone else is dead? Why did I survive and everyone else didn’t? She felt a lot of survivors’ guilt. Either verbally, I think mostly non-verbally it became very clear to me that my burden, that I had to become, the burden for me was that I had to become someone who achieved something of such significance and impact in the world. Particularly in the arena of suffering and particularly in the arena of how one can live a life in the face of death? How one can live a life knowing that they’re mortal and life just is so long? To be in that space between life and death and to have such an impact on the suffering that comes from that experience. That it would then justify my mother’s, my parents’ survival. I went to an orthodox Jewish school through eighth grade and then I escaped. My younger brother didn’t get a chance to escape because I took off my yarmulke and I started eating cheeseburgers and I started running after blonde girls in catholic school with those short plat dresses and things like that. Yes. I wasn’t the only one who had this mission. A lot of kids who I went to school with had this same burden. For me, the burden was an inspiration. For some of my classmates, it was a crushing burden. I sometimes joke, I say, for those of us, it was an inspiration. A lot of kids who I went to school with who are psychiatrists, psychologists, great scientists, philosophers, creative artists, rabbis, very famous rabbis. Then the ones who were crushed, those were the kids who went on to become dentists. Joe:                             Wow, that’s an astute observation. William:                    Yes, poor guys, you know. Joe:                             That’s an incredible thing to realise at what was a really young age. How did your perspective…? William:                    I didn’t realise it. Joe:                             You didn’t. You made sense of it with time, right? William:                    Yes. I really didn’t know who I was and who I was trying to become until… what month is it now? It took a while. I was working at Sloan Kettering, doing research on drug treatments for depression, delirium, interventions for pain, fatigue. I had no idea what I really should be studying, what I came here to study was how people can live in the face of death or why someone would want to hasten their death, which led me to how does one deal with despair? After doing all of the medical psychiatric things in the interface of psychiatry and psychology, that’s when I started to get to the real reason I was there, which were the meta diagnostic problems. Not just you have this disorder, here’s this pill. It was more the existential despair. That’s when I finally started to look at it. That’s when I realised why I was there. That’s when I realized who I was trying to become. Why I went into all of this. I was trying to figure it out for myself, but I was also trying to fulfil the obligation that I have. This legacy existential obligation. Joe:                             It’s fascinating that you talk about it as a transition, that you still had this internal compass that said even though maybe you didn’t have consciously the direction where you want to go, but you still went there. William:                    Yes, because we don’t teach people. We don’t educate people in the right way. We educate people and our society is all geared toward what job will you do? When you’re at a party and someone asks, they don’t ask who are you? They ask you, what do you do? It’s really hard for people. People never really think about who they are, they think about what they should be doing. Now, if you’re lucky, what you do allows you to express who you are. A lot of people, most people don’t know that the real task in life is when you create a life, you have to create who you will be in the world. Who are you going to be in the world? What is your intention in the world? Who are you? Then what do you want to do in the world? What job would allow you to express who you are and have an impact on the things that you care about as a who? If I talk to young doctors, young psychiatrists, young palliative care doctors in training. I sit with them to make sure that they’re not burning out because they see too many people dying. I meet with all of the palliative care fellahs in Sloan Kettering once a month. You ask them, who are you? They don’t know. Who do you want to be in the world? “I want to be a really good palliative care doctor.” I said, that’s a what. Who are you? They don’t know how to think in that way. We’re not taught to think in that way. We’re thought to think about what we should do. What role we play in the economy? What do I do to make a living? What do I do with my life instead of who I want to be in my life? Joe:                             Yes. We’re not taught to reflect on our experience on what we do. Every week I talk to my grandma on the phone. She’s still alive. She’s an incredible person who’s still the sharpest mind possible. One of the things that comes up often, she’s 96 or something, one of the things she always tells me is, I should have done this. I should have done more with research. I should have pushed myself there. I was like, but, grandma, you have a diseased named after you. You’ve done a lot. You’ve helped so many thousands of people. She goes, “No, one thing you realise when you get to my age is all the things that you should have done.” I often think about that, Bill. William:                    This is what’s called existential guilt. The idea that when you’re born and you start to grow up, a few hundred years ago, Kierkegaard hypothesised that human beings were the only form of animal, and he may have been wrong about this, at least it’s true what he said about us. We may not be the only lifeform that is capable of this, but human beings he felt were unique in that we had the ability to become aware of our own existence. That happens usually late childhood, early adolescence. Suddenly, you realise, I’m here, I exist. Then you’re overcome with a couple of emotions. Awe, it’s awesome to be alive, and dread. Oh my god. I’m a human being. Human beings die. You can die at any moment. Human beings have responded to dread or death anxiety over the last several dozens of thousands of years by creating cultures. Most early cultures were various forms of religion. A lot of them were polytheistic and then there were just a few gods and not we’re down to religions with one god. We’re getting closer and closer to the truth. We keep cutting away the number of gods. These cultures basically help you with death anxiety by supplying the answers to the big questions. Like, where did you come from? Where was I here before I was born? What am I supposed to do here? Why am I here? What do I do now? Where am I going after I die? They supply some kind of concrete or metaphorical answer to these questions, all of these cultures. The other thing that happens besides this experience of awe and dread is you become overwhelmed with this sense of responsibility; how do I respond to the fact that I exist? The responsibility is your existential obligation to your existence. Your obligation, the way you respond, what is my ability to respond to existing? I have to create a life. I have to create a life. I have to become a who in the world. I have to create a life that’s unique to me. Oscar Wilde said live your life, everybody else’s life is taken. You have to live a life that is not only unique but that you live to your fullest potential. A life of meaning, of direction, of self-efficacy, become a valued member in a culture and in a world of meaning. Things like that. You create a trajectory for yourself. you imagine an arc of your life. Shit like cancer happens that blows you off of that trajectory. Also, things like that. Very few of us actually are able to live our lives to our fullest potential because the world conspires against us in all sorts of ways. It’s called existential resistance. The world makes it difficult. Shit happens. Like a World War II breaks out. Or there’s a pandemic. Or you get cancer. Or the economy tanks. All sorts of things happen that you can’t control. You don’t necessarily get to do absolutely everything. Even the extraordinarily accomplished people have what’s called don’t live to their fullest potential. That gap between what you think you should have been able to achieve and what you ended up achieving in life. Whether you lived to your fullest potential or got close enough or whatever. Everyone has some sense of guilt, existential guilt that they didn’t quite do enough. Albert Einstein’s last words on his death bed were, if only I knew more mathematics. He’s basically dying, and he goes, “The theory of relativity was pretty good, but if I knew a little bit more mathematics, I could have done something even better.” Or at the end of Schindler’s List where Schindler is helping the Jewish workers in his camp who he helped, Liam Neeson is sitting there, dressed in prison garb and he’s overcome with the gratitude of the workers and they’re helping him escape before the Russians catch him. He breaks down and cries and says, “If only I could have saved one more.” Even your grandmother, look back at her life. When you face death, it’s like a wall, it forces you to turn around and look at your life. The question is, can you accept the life that you live? That’s the real question. Not can you accept death, because your brain isn’t designed to just go ahead and accept death. Every neuron that says run is lighting up. Can you accept the life that you’ve lived and face death with some sense of peace and equity? Your grandmother has a sense of the finiteness of her life. She’s looking back. She goes, maybe I could have done more or this or that. Sometimes you can write that last book, or you can do that last experiment or something like that. Ultimately, what it takes is forgiveness. To be able to forgive yourself for being merely human. Loving yourself enough to forgive yourself. Self-love is a very interesting topic. We human beings are imperfect and we’re fragile and we get cancer and shit like that. We can either be ashamed of it, or we can take another attitude of loving ourselves and being empathic of ourselves. When you realize that you’re imperfect, it actually teaches you empathy toward others. It’s what allows you to love somebody else. Empathy. As it turns out, nobody loves perfect people. Joe:                             Wow. William:                    I have had such a difficult time with women falling in love with me because of how perfect I was. I’m teasing. Nobody falls in love with a perfect person. They’re impossible to tolerate and actually, they don’t exist. You end up loving the flaws of a person. The tiny little imperfections. That’s what really gets the hooks into you. Actually, being imperfect is what allows you to love, and what allows you to be loved in return. It’s something to cherish and value and celebrate, your imperfections. It’s what makes us human and what makes our experience unique among all other animals. We’re living a very unique experience as a human animal. When we are living our lives as only a human being can, that’s when we feel full of a sense of meaning. When a woman is giving birth to a human baby, as only a human woman can give birth to a human child, that fills her full of meaning. When you’re sitting at the edge of the coral reef or you’re diving in the coral reef and you’re experiencing the grandeur of nature and stuff like that, you’re overwhelmed with the beauty of the universe. You’re having a very different experience than the little fish who is swimming beside you. They’re not experiencing the coral reef with that sense of awe or joy or wonder, or connectivity to the entire universe. I usually use the Grand Canyon as an example, but I figured since you’re Australian, I should use the coral reef. It’s a very interesting thing being human. During the pandemic, it’s still difficult. It was a difficult experience. I was thinking about my parents an awful lot because what happened to my parents was at aged 14 for my mother, 17 for my father, they had to escape into the woods, into the forest. My mother and father were second cousins. They ran away and joined a group of partisan fighters and other families. They slept in the forest. They didn’t know when they were going to eat again. The forest floor was their bed. They never had a shower or a change of clothes. My mother and father would have to sleep holding each other not to freeze at night, which is a good way to setup a 65-year long marriage. They didn’t know when some Ukrainian soldiers or German soldiers would come upon them and kill them. They didn’t know where their next meal was going to come from. I started thinking about their experience. At least I have my own bed to sleep in while I’m isolating. I have my own bed; I can take a shower. I can order food in. I have Netflix. I can work from home. It’s a very different experience. It was reminiscent of their experience. I remember one morning I got up and I went to the kitchen to get some coffee. I said out loud to my parents who are passed away now, I said, can you believe this is happening? Of course, you believe it’s happening. It’s nothing compared to what you had. I was looking out the window waiting for the water to boil on my teapot. I was thinking, it’s an absolute randomness, the incredible odds against me every having been born or even existing were so stacked against me. All that needed to happen was for my mother or my father to make a left turn one day instead of a right turn and I would never have been here. Just the incredible randomness and the luck. The odds. That I would even have this opportunity to exist and have the experience of living a human life. Disney Land at the human life ride. Here I am. Why question it? Why question it? Why complain about it? Enjoy it. Go for the ride. Good, bad, all of the things that happen. Live it until it’s over. Go for the ride. Would you rather not have ever had the experience? Maybe. You’ve got it, you might as well live it. The biggest problem I find is living, being able to live despite the knowledge that bad shit can happen. The difference between you and me and most people walking the street who’ve never had cancer, or a serious illness is we have concrete proof that something life threatening that can kill us actually happened to us. Joe:                             That is so true, Bill. William:                    We fucking believe it, we know it. We believe it. For other people, it’s theoretical. It’s not theoretical. It’s real. The question becomes, how do you live with that knowledge? In the way you live, you try to live life as meaningfully as possible and with intention. A lot of people live their lives, they don’t know why they’re doing what they’re doing, they might be living unintentionally meaningful lives, but they’re also wasting a lot of time. You don’t have that much time to waste. The Seneca wrote a book on this, the shortness of life. His premise was, life isn’t that short, really, but we waste a lot of time. Joe:                             That is so true. William:                    Really. The real challenge is not how do you die? It’s how do you live knowing that you die someday? It can come at any moment. Some people think that’s worse than knowing that you’re going to die. The fact that it could come at any moment. I could drop dead before our Zoom call is over. Joe:                             It’s almost a wake-up call. For me, it feels like the reality of knowing that I can die is my way into living into what could be called mindfulness because I realise that today is every single day that I’ve been given. If I’m stuck in traffic or if I’m in a place where I feel like there is too much going on and I’m busy. I remember, what if this was my last day on earth? What would I do now? William:                    You’re absolutely right. It is a wake-up call. Sometimes I describe it as you need to know your destination before you chart out the course of your life. It’s like if you’re in a car and you’ve got a GPS system and you’ve got one of those things on your phone, the first thing you need to enter to plot out the route is the destination. I was once in a rental car, early days when they had GPS in the cars. It was a voice. The GPS voice was a woman’s voice. Where would you like to go? I put it in. It gave me a choice; would you like to take the fastest route there or would you like to take the scenic route? I want to take the fastest route. I want to go straight to death. I don’t want to meander. It’s like a GPS in a car. It helps you plot the direction of your life. It helps you understand. There was some TV show on cable TV, HBO called Six Feet Under and this family, the father owned a funeral home and he died, so the sons had to take it over. They don’t know anything about this funeral business. The young man who died who’s married to this young woman. She’s crying and talking to one of the sons. She says, “Why is there death in the world?” He said, “I don’t know, I guess so we know how valuable life is.” Joe:                             That’s exactly right. It teaches us about ourselves. William:                    Right. When you’re creating a life, you’re not creating jut any life, you’re creating a human life. You’re creating the life of a human animal, which by definition is finite vulnerable and involves both developing an attitude, a relationship, a connection to the awe and the dread of life. The living, the fact that it involves creating connections in that relationship and attitude toward living and also the possibility of dying at any time. You have to develop an attitude. Most people don’t even think about that in creating their lives until they’re confronted by something. Like what you or I were confronted by as relatively youngish people. Yes. I remember one time 30 years ago; I was called in to do a consult on a patient and it was a 65-year-old man had prostate cancer and he virtually said this to me. He said to me, “Dr. Breitbart, up until I was given this diagnosis of cancer, I never once thought of death in my entire life.” I said, what? He said, “I never thought of death.” I said, you’re kidding me. That’s impossible. “I didn’t really. I’m 65, my grandparents are still alive. My parents are still alive.” Something like that. He went into his father’s business and he made that business. He never wanted for anything. His life was like an MTV video. He never really had any hardship. He never had a pet that died. Nothing. I don’t quite believe him. Imagine. Living most of your life not even with the thought of death. On some level, I envied him. I would have had a lot of really good restful nights. Just saved up the worrying for the last period. Joe:                             That’s something that we are all confronted with as we go through cancer. We go through this trajectory. Whether we have been thinking about death or dying or whether we haven’t. We’re on this trajectory. We’re going. All of a sudden, whether you hit a wall. William:                    You get knocked off. This guy was on a trajectory that never got disrupted. He never thought of death. It was really very interesting. I suppose there was no drama in his life. It was a comedy. I was a chemistry major at pre-med going to med school. Then I was also an English major with a concentration in writing. Poetry writing and playwriting. Mainly poetry. My playwriting teachers would say, “Bill, I hear you’re a very good poet.” The way you create drama, you take the arc of the character, which is the trajectory an then you put some obstacle in the arc of the character. Boy meets girl. Boy falls in love with girl. Girl falls in love with boy. Boy loses girl. The drama is falling off that arc and then finding some way to reconnect or even transcend that original arc to something even greater than you had imagined you could become, which is your life and my life. Joe:                             That’s exactly right. How do you do that with people who feel they’re going through this transition and they feel lost, and they feel unsure about themselves and how to make sense of things? William:                    Yes. That was my question. That was the biggest question I had about 15 years ago. I started seeing people, I’d come into the room and I’d say hi, I’m Dr. Breitbart, your oncologist asked me to come in to say hi and see you. They’re a little bit concerned that you’re a bit depressed. Is there anything you think I can help you with? This one guy said to me. He’s a Chinese fellow, he was a scientist himself. He said to me, “You want to help me?” I go, yes, I’d love to be able to help you. “If you want to help me, you’ll kill me.” I said, why is that? “I’ve got such and such cancer. I’m going to be dead in three months. I see no reason, purpose, meaning, value in hanging around. If you want to help me, kill me.” I didn’t have an answer right away. I probably said something like perfect, you’re the perfect kind of guy that I can help. At that point, I had been dealing with other patients like that, I started to look at research that looked at what makes people want to have desire and hasten death. I found that depression, about 50% of people who speak like that guy does are clinically depressed and haven’t been treated. I did studies looking at treating depressions, desire to hasten death goes away. That’s only 50% of these folks. He wasn’t clinically depressed. If he wasn’t depressed, why else? We did more research. We found that there are a couple of things. Lack of social support. Extreme pain. Things like that. What really popped out was loss of meaning and hopelessness. Synergistic independent. I went searching for some kind of intervention to help with loss of meaning. It’s interesting now that I have a few colleagues and friends who are doing psilocybin research.  It seems to have some effect on that. I’m involved in some of their studies now, I wasn’t in the earlier studies. I turned to the work of Victor Frankl who you may know, a man’s search for meaning or whatever. I took some of the basic concepts of Frankl’s work and I developed something called meaning-centred psychotherapy for cancer patients. It’s a brief seven-session intervention. It works very well. You have to want to be able to do it. You don’t have to necessarily do the structured intervention. I’m so familiar with all the elements of it, I could do it at the bedside in one session. I look for that existential guilt. I look for who they are and if you identify yourself and your dignity as residing in who you are as opposed to what you do and what you’re capable of doing. In ways of who you are being as opposed to what you can do. What’s very interesting is who you are doesn’t quite change. If you’re a loving person before, you’re still a loving person. Joe:                             Is it about reconnecting with that? William:                    Absolutely. It has to do with these various understandings of the importance of meaning and being able to actively go search for creating it and re-experiencing it because you’ve lost it. Knowing that there are certain sources of meaning that you can go search for. You take a tree that’s routed in the ground. That tree is completely dependent on the universe and the weather for its existence. It doesn’t make chlorophyll unless the sun comes out. It doesn’t get water unless it rains. Birds can come by and peck on it and all sorts of diseases can come by and squirrels can inhabit it and all of that. It’s very passive. It can’t go, get up, and get the things it really needs to really nurture itself. We human beings are different than trees. We are actually mobile. We can go and search for the awe. We can search for the meaning; we can search for awe. We can search for joy. We of course are like trees in that we are subject to what life brings us, what our inner bodies do to cause us to stress and despair. What the world brings us in terms of service and difficulties. We have the ability to respond. To choose how we respond. Both in terms of our attitudes and in our behaviours. Joe:                             How do you guide that? It’s really hard to navigate at the best of times, particularly when you are face-to-face with mortality, with the fact that you could die, or you know that you are likely to die? How do you reattach that meaning and how do you go about that search? William:                    Part of it is an intellectual process and if you have lost that ability to think, it’s very hard to do that. Ultimately, what it boils down to is emotion and love and connection. If you can experience that, that is meaning in the most basic, elemental form for human beings. When my father was dying, and I was sitting at his bedside and I was holding his hand. He looked at me and he recognised me, and he said, “My son is with me, I can die now.” That was a meaningful moment for him. He experienced meaning in the very last breath he took. It’s emotion. Love. It’s corny. It comes down to love, doesn’t it? It’s corny. Joe:                             Exactly. Love. Sometimes love is a guilty feeling. Especially when it’s self-love. William:                    Yes, which is so hard. Joe:                             Where do you stand on self-love? Is it even okay to do? William:                    It’s probably the most important thing you can learn to do in your life. It’s the most difficult. It’s the most important. That’s what allow you to forgive yourself for just being human. If you don’t love yourself, it’s harder to forgive yourself. I have a son who I love unconditionally. I know what unconditional love feels like. I know my mother and father loved me unconditionally. I once asked myself, does my son love me unconditionally? Did I love my mother unconditionally and my father? Certainly, I had my battles and all that to get my independence. Ultimately, I loved them unconditionally. I loved who they were, not what they were, but who they were. If there’s only one thing I know about who I am, I know that I’m the son of Rose and Marge Breitbart. That’s the only thing I’m sure of in the world. Everything else is probably imaginary. I wonder if my son loved me unconditionally. I asked him, he said he did. It’s hard to believe that someone loves you unconditionally. I try to believe it. Then I said to myself, look, I helped create this incredible human being, that’s not too shabby of an achievement. Just for that, I achieved a creature who is unconditionally loved. That’s not a shabby thing to do, so maybe I deserve a little bit of love for myself. I didn’t do a bad thing there. There’s something about that. For me, it’s still the hardest thing to forgive myself. Even during this pandemic, you write a book or something like that. I wrote three fucking textbooks. One of them is 100 chapters long, weighs 10 pounds. It’s the bible of my field. I wrote the fourth edition of it. I took over writing it from my mentor who died three years ago who wrote the first three editions. When it came out, I felt nothing. Joe:                             Why is that? William:                    I enjoyed the process of doing it. I loved every minute of the process of doing it, but once it was finished, it wasn’t like that was the goal. The goal was creating it. Once it was done, that wasn’t the achievement. The achievement was all of that work that went into it before it got printed by the publisher. It was really competitive. We’re competitive creatures. Joe:                             In the work that you do, will there ever be a point where you feel like this is enough. I’ve done what I’ve had to do? William:                    When I was 50 years’ old, I had a birthday. My mother wrote me a birthday card. She wrote in the card, she said, we’re so sorry, we know that growing up we had such extraordinarily and impossible expectations of you and what you would achieve in your life, but you’ve surpassed them all. Please, stop. Relax. You’ve done enough. You don’t need to do this anymore for us. She was aware of this burden she gave me. I turned to my mother and I said, “Mom, I stopped doing it for you quite a number of years ago.” I stopped doing it for you. It’s very hard to stop. One can reach a point where you have a sense that you perhaps achieved something of some significance, and you can look back at it and feel a sense of pride and a sense of completeness in a way. I’ve trained myself to be someone who is constantly trying not to waste my life. The time of my life. I enjoy so many things that give me a sense of reward and meaning. I love writing. I love music. I love writing essays and poetry and things like that. I love thinking of ideas for research and I love teaching. Those are things that I probably would never want to stop doing. There’s a difference between feeling that you may have achieved and there’s a sense of completion of your life’s work. I did something significant, but I think for me and I don’t think it’s that healthy really, even, to stop being alive and living meaningfully. That’s what I worry about in terms of retirement. People work and then they retire. They retire to sit and wait for death, which is not a fun thing to do. Joe:                             I find it fascinating that you had this insight, which I think is very powerful. That you’re doing this for yourself. William:                    I’m not doing it for you, I’m doing it for me. In other words, it’s mine. It’s who I am, I’m not doing this to fulfil your dream only, it’s my dream too. It’s who I am. It’s my intention. It’s not necessarily done for me. It’s done as an act of generosity and love and healing for the world. I get rewarded, but it’s not like I’m trying to accumulate stuff. I own it. Joe:                             Exactly. There’s a sense of freedom in that, Bill. I remember talking to my wife about going through cancer. I remember going and telling her through difficult moments, I almost in a way did it for you because I wanted to be with you and with our son. Then something made me think, something she said, made me think and realise, I was doing it for myself. Yes, I wanted to be there, but something around that was I was doing it for myself. Just to even admit that, it was hard, but it made me more free because it felt like now it’s okay to do things that I feel are right for me. William:                    A lot of what’s necessary in living is to try to, under whatever circumstances you are, to remain and to preserve your authenticity as a person. to remain authentically who you are. That’s the part where you come in. I have to be me. I’m doing this to sustain who I am, me. Who you are is someone who loves their wife and loves their child or children? These are the more precious people in your life. These are the most precious relationships in your life. They help define who you are too. You’re authentically a husband, a loving husband, a loving father, part of a family. You’re part of something greater than yourself. You are a part of this family that you’ve created. You didn’t just create your life; you created a family. You create new life. You created a future. Joe:                             Exactly. Do you think that’s something that then is also a part of creating meaning, is being something that is bigger than yourself? William:                    Absolutely. Connection is a big source of meaning. You can be connected through love, through all sorts of ways. Connected to people you love, people in your family, your friends and all of that. You can be connected to your community. Connected to your past, the future. You can be connected to something greater than yourself. That’s transcendence.  For some people it’s a relationship to god, being connected to god. For other people, it’s being connected to something that’s even more significant than just me. It’s my family. It’s something that I believe in. It’s the legacy of my family. It’s the idea. For me, it’s the science of my work. It’s the impact of my work, whatever. Joe:                             You mentioned god, it made me think of when I would be in my oncology ward. Someone came in, I don’t know for whatever reason. They said, “Would you like to see a rabbi?” I remember thinking, I said, no, because I thought, does this mean that I’m dying? All sorts of weird things came up. What would I say? A part of it, this whole idea of being in some way having that feeling of discomfort with religion or spirituality or finding a place within that, what does it mean for you? Is it even helpful? William:                    What does what mean to me? Spirituality? Joe:                             Spirituality, yes. William:                    For me, spirituality is any experience that a human being engages in in trying to understand their place in the universe. That’s Carl Sagan’s definition. Anyone human being who contemplates their place in the universe is engaging in a quintessentially spiritual experience. I would say it’s even a religious experience in the sense of the word religion comes from the Latin - to tie together. It’s all about trying to make sense. How do I tie together the big questions? Where did I come from? What am I doing here? Where am I going? Whenever you do that, you’re actually making the infinity sign. That’s for me what spirituality is. It’s also the mystery. I don’t know the answers. I’m a scientist, but I don’t know. There are people that taught me as a young child who had all of the answers, but for somehow, someone told them exactly how the universe was created and what happens after you die. They were authorities on this. From a book. A whole little religion that was created. I wasn’t that old before I figured out, this doesn’t make a lot of sense. What I do know is, I don’t know. I have a pretty good idea, but it’s mysterious. The only solace I take within that mystery is infinite possibilities. Judaism is a very interesting religion in the sense that it doesn’t have as much emphasis on heaven or afterlife as Judaism version two, Christianity and all that kind of stuff. Actually, a lot of people mistakenly think that Jews don’t believe in heaven. Apparently, we do. We have that pretty worked out, as well. It’s not like heaven is our reward. In Judaism, life is what’s precious. You hold onto it every moment. That’s why I have 98-year-old rabbis that are intubated on ventilators and nobody wants to let them die. He has to live ever last second that god intended. Life is the precious thing. Not the afterlife. This is the adventure. Joe:                             I’m fascinated when you said infinite possibilities. What does that mean for you? William:                    It means, I may be surprised. Joe:                             In a good way. William:                    In a way I didn’t expect. Yes. In a way I didn’t expect. Physics is kind of interesting. There may be a parallel with quantum physics and string theory. Me at birth exists somewhere right now in a different space-time slice. It’s very complex. I don’t know what to expect. I expect nothing. Nothingness. In physics, the big bang was created out of nothing. What they’ve discovered is that nothing actually has a few things in it. There were a few particles of something in nothing. I don’t know. A lot of possibilities. I don’t rely on them very much, that idea. I don’t rely on it very much. Another Greek philosopher, Epicurus. He had this idea of something called symmetry. The idea is that wherever you’re going after life. Yes, once life is over and you die, you’re probably going to be in that same state or space or whatever that you were in before you were born. There’s a symmetry. Before death, after death, it’s the same space. I don’t spend a lot of time being freaked out about where was I before I was born? I do spend a lot of time being freaked out about what happens after I die. I say to myself, before I was born, I was not in despair or distress. I wasn’t trapped some place. Existence was no painful or distressing in any way. Maybe that’s what it’s going to be like, like before life. My mother used to say something to me every time we were at a funeral. Over the years, we went to a bunch of funerals. We were at the cemetery and the person being buried and we were walking back to the car. My mother would find me, or we might be walking together already. She’d grab me, she’d hug me, she’d hold me very close. She’d say to me, “Don’t be afraid of death. Death is normal. It’s natural. It’s part of the cycle of life. Everything is born and lives and dies. It’s natural. Don’t be afraid. At least today, it wasn’t you or me, sweetheart.” When we buried my mother, I grabbed my son and I held him close to me and I repeated the same thing to him. At least today it wasn’t you or me, sweetheart. That’s my religion. My son was eight years old. We sent him to Jewish Hebrew day school. Synagogue. Which we stopped going to as soon as his Bat Mitzvah was done. He said, “God watches over every human being in the world, right, dad?” I go, yes. I think so. He says, “There are billions and billions of people in the world, aren’t there?” Yes, I think there are billions. “I think there are several billion people.” Yes. “God has to keep track of every single one of those billions and billions of people.” I go, I guess so. “You think there’s any chance that he might not notice me, and I won’t have to die?” I said, I think there’s a chance. Let’s hope he doesn’t notice both you and me. Don't Forget To Sign Up for Your 7 Day Challenge to Take Your Life Back After Cancer!People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today: #btn_1_5095f450e13754607e74fd13894c14a2 .text {font-size:16px;color:#ffffff;font-weight:bold;}#btn_1_5095f450e13754607e74fd13894c14a2 {padding:5px 25px;border-color:#000000;border-width:1px;-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;background:#38b6ff;background:-webkit-gradient(linear, left top, left bottom, color-stop(0%, #38b6ff), color-stop(100%, #38b6ff));background:-webkit-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-moz-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-ms-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-o-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:linear-gradient(to bottom, #38b6ff 0%, #38b6ff 100%);filter:progid:DXImageTransform.Microsoft.gradient(startColorstr=#38b6ff, endColorstr=#38b6ff, GradientType=0);box-shadow:0px 1px 1px 0px rgba(0,0,0,0.5);}#btn_1_5095f450e13754607e74fd13894c14a2 .gradient {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .shine {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .active {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .hover {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}Sign Up Today I will never give out your email - view my Privacy Policy

In this episode of Simplify Cancer Podcast, we talk about better ways of dealing with prostate cancer with our special guest is Professor Jeff Dunn, Chief Executive Officer of Prostate Cancer Foundation of Australia. Jeff is an expert in cancer control and has helped to create better supportive care and quality of life for those with prostate cancer. Here is what we cover in our discussion today: Understanding your own support needs Objective measure of distress The diversity of prostate cancer and what it can mean for you Where to turn to for support in a time of need Understanding the impact of cancer Jeff’s contribution to the global response to cancer and much, much more! Links Full episode transcript (PDF) Don't Forget To Sign Up for Your 7 Day Challenge to Take Your Life Back After Cancer!People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today: #btn_1_5095f450e13754607e74fd13894c14a2 .text {font-size:16px;color:#ffffff;font-weight:bold;}#btn_1_5095f450e13754607e74fd13894c14a2 {padding:5px 25px;border-color:#000000;border-width:1px;-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;background:#38b6ff;background:-webkit-gradient(linear, left top, left bottom, color-stop(0%, #38b6ff), color-stop(100%, #38b6ff));background:-webkit-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-moz-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-ms-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-o-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:linear-gradient(to bottom, #38b6ff 0%, #38b6ff 100%);filter:progid:DXImageTransform.Microsoft.gradient(startColorstr=#38b6ff, endColorstr=#38b6ff, GradientType=0);box-shadow:0px 1px 1px 0px rgba(0,0,0,0.5);}#btn_1_5095f450e13754607e74fd13894c14a2 .gradient {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .shine {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .active {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .hover {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}Sign Up Today I will never give out your email - view my Privacy Policy Episode Transcript: Joe:                             Jeff, thank you so much for being here.  I’ve been really looking forward to talking to you.  Welcome to Simplify Cancer Podcast. Jeff:                             Thank you, Joe, it’s my pleasure.  I certainly appreciate the invitation. Joe:                             Jeff, you’ve done so much, so many fantastic things in the world of prostate cancer.  I wanted to ask you first, Jeff, what is different about men facing cancer?  Do we have different needs?  Do we express things differently? Jeff:                             There are some differences.  By in large, and as a generalisation, people talk about men being more problem focused than women.  Men will collect information to try and solve a problem.  Women, once again, this is a generalisation, people talk about women being more interested in that connection, in that communication style of coping strategy.  Look, there are differences.  As an overall comment, I’d say that cancer patients, irrespective of gender are not passive recipients of support.  When faced with a life-threatening disease, people, men or women, will make choices based on the information at hand and have personal preferences about how they receive information, support, and services.  It’s a difficult one to generalise, Joe. Joe:                             Yes, absolutely, Jeff.  When you’re diagnosed with cancer, it just flips your entire world upside down.  Jeff, what would you say to someone who has been newly diagnosed with cancer and may be struggling to really come to grips with their disease? Jeff:                             Joe, first up, for someone who’s newly diagnosed, the message is, from all of our evidence and all of our research, that most people do well over time.  It gets better.  Not for everyone, but for most people.  I think that’s the important message.  If you’re newly diagnosed and you’re finding that you’re working out how to deal with this, seek out information for a start.  Find information.  Be prepared to talk to other trusted friends, if you want to.  Certainly, do talk to people.  Use those supports that are around you.  For many of us, there are supports around us.  You can always go to reputable sources.  If it’s cancer, cancer councils or Prostate Cancer Foundation Australia, or Carers Australia, or the National Breast Cancer Foundation.  You can find these sorts of reputable organisations.  Of course, your healthcare team, certainly talk to them about how you’re feeling, to your general practitioner, or if you’re seeing a psychologist or whoever, but talk to them about how you’re feeling and how that’s going.  Remember that there are things that can be done to help. Joe:                             Yes, I think that’s such a huge point that you make, Jeff, about really exploring all sorts of different possibilities to get help.  It shouldn’t be just one thing, but there are so many options.  I think the more tools you have to help you get through it, the better it is. Jeff:                             Look, without a doubt.  That’s what I always say, people seek out things that suit them, each of us have different ways of coping or gaining knowledge or making decisions, of assessing choices.  It’s important that we look at providing just an answer or not just one option, but a multi-layered suite of potential responses to provide for individual needs.  Remember, those needs vary over time.  What people need at the point of diagnosis might well be different to what people need six months and twelve months down the track.  Once again, it depends on their cancer, on their diagnosis, on their treatment, on their own makeup, on their family, on their community, on their sociodemographic, on their financial needs.  All of these things play a role and it’s complex, but it’s important that we understand their things we can do, and things can get better. Joe:                             Yes, exactly.  As you say, Jeff, we have different ways that we respond to thing.  Really, as a behavioural scientist and a researcher in cancer control, what would you say are your observations about how cancer impacts people in a different way? Jeff:                             We’re all different.  When you think about people’s response to cancer, it’s about individual responses.  It’s about the psychological makeup, it’s about their social response to their communities, about how they’ve grown up.  Their sociodemographic situation.  Their ethnicity, their cultural backgrounds.  All of these things impact.  They all influence.  They all mediate response.  Of course, there’s no one thing, which, again, points to the importance of looking for a range of responses, a range of channels for patients who are diagnosed, so that we put them in the middle of this and provide them with options to make choices in ways that best suit themselves. Joe:                             Yes, that’s great, Jeff, because it’s all about knowing that options are available and then choosing what’s right for you.  Jeff, I really remember going through cancer and thinking, this is cancer.  It’s supposed to be hard.  You get caught up in your experience.  Sometimes it doesn’t occur for you to seek help.  How do you really know that you yourself might be struggling with something and you might need help?  Is there an objective measure to get a handle on stress? Jeff:                             Joe, there are a couple of things and thanks for sharing your story and you’re right.  A cancer is a life-threatening disease.  When someone’s diagnosed with cancer, it’s usual to be concerned about that.  To feel a threat.  It’s okay to be a bit concerned and worried and those sorts of things.  People need to understand that.  It is a threat to wellbeing, and everyone responds to that differently.  In the early stages, of course, it’s about understanding what means for you and how you cope with it.  In terms of objective measures for assessment.  Look, it’s not unusual for people when they first get a diagnosis, their sleep patterns are disrupted, they might be a bit more irritated than they usually are.  Their concentration might be reduced.  I think what’s important for people is to be able to assess or think about when those sorts of things get to the point when they have a significant or meaningful impact on their lives or on their relationships or on their work. They are the points in time where you might actually start to put your hand up and say, maybe I need to talk to someone about getting some advice or support or assistance or starting to talk to others certainly about that.  From a professional point of view, health professionals, we have some tools we can use now and one of those is a distress thermometer, which we’ve been putting in place and trying to understand a standard care when a diagnosis of cancer is being made, so that health professionals themselves have got an objective measure when it comes to trying to assess how people are coping from a psychological, social, and emotional point of view. Joe:                             Yes, that’s fantastic, Jeff.  Tell us about this distress screening tool.  How can it help me, or others diagnose?  How can it help when you’re struggling? Jeff:                             I think when we’re talking about people’s emotions and their feelings and anxiety, they’re abstract sometimes, aren’t they?  They’re difficult to actually measure specifically.  It varies so much across people.  The distress thermometer is a very simple point scale, one to ten.  It’s accompanied by a symptom checklist, so that we can actually go through specific items that might have an impact on that person.  Essentially, we’re asking people, on a scale of one to ten, how would you rate your level of distress right now.  We know from all the evidence that it’s validated, that it works.  We know that people who score four and above are more at risk for ongoing distress and anxiety. By putting the distress thermometer in, we have an objective measure.  Particularly for health professionals in this sense because it starts the conversation.  If you have something like a distress thermometer, you say to someone, let’s talk about that now, and someone has a rating of four or above, then you can start that conversation.  These sometimes are conversations that might not happen unless you had something like the distress thermometer in place.  We see a whole range of benefits coming out of this and once again, we know from all the evidence that it makes a difference, and it will work. Joe:                             That’s fantastic, Jeff, because it leads you on a path to discover and I think what I really love about it is it helps you to self-identify some of those problems.  It’s the patient who’s saying, “Listen, I’m maybe struggling in this area.” As you say, this can lead in the treating doctor to ask more questions and to help them deal with it, right? Jeff:                             100%.  It starts the conversation.  Sometimes, as I said, these conversations don’t get started and the thermometer provides permission for both the patients and the clinician to actually talk about things.  You start with an objective measure that says, today, I feel pretty distressed.  I’m a six or a seven.  There are things that can be done that provides a clinician no advice.  The clinician then can work with the patient and take the necessary interventions or make the necessary referrals if those are necessary. Joe:                             Yes, absolutely.  Speaking of that, Jeff, really, we’re talking about many different approaches to psychological treatment, with people experiencing cancer related to stress and worry.  If you’re going through cancer and it’s getting a bit too much, where do you turn?  Do you look for a psychologist?  Is it a psychiatrist, is it a council?  Who’s going to help you?  Also, how do you know who to trust and who’s advice you should take? Jeff:                             Terrific question.  Come back to basics, in the first instance, talk to your doctor.  Identify reputable sources.  Once again, cancer councils, or Prostate Cancer Foundation from reputable sources.  Health department sites, where they will provide information and talk about options.  If you talk to your doctor, you can get referrals to psychologists or psychiatrists, if necessary.  Each of these professions.  Councillor, psychologist, psychiatrist each have a role to play and in somewhat different ways on occasion.  They each have a role to play.  Once again, your general practitioner or your family doctor or reputable organisations will be able to help direct you in that regard.  I think it’s important to understand that once again, there’s no right answer here, Joe.  I think for patients out there, it is a matter of saying, I think I need to talk to someone.  If you’re not sure where, go to a doctor, go to your GP, or go to a cancer council or prostate cancer foundation helping, if it’s a prostate cancer, for example.  They are the people you can start.  Then you start to get the referral points out.  Depending on what your particular needs are.  That’s important to assess, as well. Joe:                             Yes, absolutely, Jeff.  Let’s say you do get directed to a specific professional, you spoke to having different needs and preferences.  How do you really know that this is the right person for you?  Like, just in the way that speaks to you on a personal level. Jeff:                             It’s critical that you can speak with these people on a personal level.  There’s a concept called therapeutic alliance, which is crucial in these aspects, which is how the patient and the clinician connect.  It’s very important.  If you’re seeing someone and you’re talking with the clinician via GP or a psychologist or a psychiatrist or a counsellor, you’re not actually resonating.  That person doesn’t seem to be on your wavelength.  It’s okay to actually recognise that and then you get a referral to someone else because depending on the individual therapy or the particular approach or the clinician or whatever, they will take their own approaches.  As we spoke about it earlier, patients aren’t passive recipients of support.  We actually make decisions on the value of things based on how well they resonate and connect with us as individuals.  If they’re not doing that, it’s important to find a source of support that does resonate with you.  You can ensure that that therapeutic alliance is working well. Joe:                             That makes so much sense to me, Jeff.  It’s okay to seek a different opinion or a different perspective.  Someone who you really might gel with better.  It also raises a question in my mind, Jeff, when it really comes to seeing a psychologist or a counsellor.  Sometimes you don’t really know what to expect.  Especially if you might be already in a high level of distress, you might be dealing with cancer.  Is it going to feel unnatural?  Are you going to get asked personal questions that you maybe don’t want to answer?  Do you see that as a problem, Jeff? Jeff:                             Again, it comes back to fit in that alliance.  Psychologists will have their own way; each psychologist will have their own way of approaching a person’s needs and delivering therapy.  So will each psychiatrist and so will each counsellor and so will each sports and exercise physiologist.   It’s a matter, again, for the patient in that circumstance to make assessments about how well that’s working for them.  To be prepared to acknowledge when it’s not and to seek alternatives.  Professionals, whether they’re psychologists or psychiatrists and others will have, in most cases, the ability to adapt and to assess and to measure in that relationship, whether they’re connecting and change styles to suit.  In the end, if it’s not working so well, you need to actually look somewhere else.  It will be personal questions, but it’s about how they’re put.  It’s about the level of comfort you’ve got with that person, about how it’s introduced.  Then, again, about what’s done with your answers?  Again, it speaks to the importance of the relationship between the clinician, the therapist and the patient. Joe:                             That’s a great point you’re making, Jeff, about the fact that if you’re a professional, you can change styles and adapt.  I think that’s a really important point to note, because sometimes it’s easier to talk to a psychologist or a counsellor, as opposed to someone who’s already a part of your life, like your partner or a friend, because they don’t know you, but they know how to listen and they know how to approach different situations to help you through it. Jeff:                             100%.  With friends and family members, there are some things that you talk about openly.  There may be some issues and concerns and fears that you can use that objective assessment of a professional, whether it’s holding up a mirror and allowing you to process some stuff, or to take you through a particular process in a logical sequence to arrive at a decision.  That is important and is not something that family members are well placed to do.  Maybe because family members and friends, they care about you.  They love you and they’ll say things to you and for you and with you and do things which are all about support and care, without that professional structure to guide some of that intervention.  Of course, we all go back to our personal life, perhaps there are some things that you want to talk about which you want to keep personal to you and perhaps professional and not raise with family members.  There are differences.  Families and friends provide fantastic support.  In many cases, it’s all patients will need, and they’ll work through and process it themselves.  On occasion, there are some interventions which can be professionally delivered. Joe:                             Yes, absolutely.  I think you know the more help you can get, if it works for you, I think the better it is.  Jeff, when we look at our society and I think it relates to some of the things that we’re talking about now because of the complexities involved.  It sometimes seems to me that we try to find simple solutions to what maybe be complex and multi-layered problems.  Where do you think we should place our focus?  What should our priorities be in this instance? Jeff:                             Joe, you’re right about society.  It’s changing, isn’t it?  It’s complex. Joe:                             Yes. Jeff:                             I have to say, sometimes the simple things are the best.  I’ve seen it happen.  The warmth of a touch or the openness of a smile, the touch of a hand can sometimes has a profound effect on how people are feeling and how they respond.  Sometimes going for a walk just to clear your head can do terrific things for your affect, for your mood, for how you feel about things.  Simple things can and do make a big difference.  We mustn’t lose sight of those.  Let’s remember that they can be critical.  Having said that, depending on an individual’s experience, there are some things where coping becomes tough.  Some cancers have morbidities and side-effects that challenge over time.  Over long periods of times.  People’s response can vary and so, again, it’s important to understand that close personal support networks are critical.  I addition to that, a range of programs and services, again, where we have referral options for patients, depending on their need and their preference, will make a difference. Joe:                             Absolutely.  That’s fantastic, Jeff.  Listen, I know you launched a new psychosocial model of care for men with prostate cancer.  Tell us, what led you to develop the model and how does it work? Jeff:                             Well, we were working on the distress thermometer, of course, as we’ve discussed already.  Once we published that and we have a positioned statement on screening for distress, I think it was important then that we had a look at all of the evidence about potential points of referral.  We produced a monograph on psychosocial care.  Look, essentially, it’s a self-help book for professionals who are dealing with cancer.  What we’ve done, we’ve gone through and we’ve identified all of the potential interventions or all of the evidence-based ones.  We summarise those to provide advice, evidence-based advice to clinicians who are working with cancer patients.  It runs all of those things.  It covers things on exercise.  We mentioned, by the way, exercise is a very important intervention and there is a lot of evidence for it, just to keep active, it’s very important.  Positive behavioural approaches.  Stuff around psychosocial education, education work, coping skills, training, problem-solving.  A whole range of things we’ve included in that monograph.  That’s available for health professionals when they’re working with cancer patients.  It’s proved to be very useful. Joe:                             It’s great I think, Jeff, that it’s got what you’re talking about.  It’s essentially a toolkit with your different tools that you pick out and to apply, to help people wherever they’re at.  It could be multiple things.  Someone might need help with exercise, or they might need some kind of therapy and it really depends, it really sounds like something that you can suit to a specific situation. Jeff:                             Exactly right.  Once again, sometimes it’s the simple one.  It’s having a supportive family network.  Or it’s talking to someone else that’s shared that experience.  Peer support.  For many cancer patients, peer support is the preferred method of support, what is of greatest benefit to them is actually talking to someone else who’s been diagnosed with that cancer and has gone through that experience and can validate their feelings, can share their experience and can make them feel that they’re not unusual, as they face what’s ahead.  It’s important that there’s a whole range of these.  They’re not all complicated psychologist or psychiatrist delivered complex interventions.  Or they’re not all about pharmaceuticals about drugs.  There are a whole range of things that we need to keep in mind.  Some of them are about that simple human connection.  Information and connection as well as some of those more professionally delivered ones. Joe:                             Makes so much sense, Jeff.  I want to just touch on the support groups that you brought up because I think that’s such a hugely powerful tool and ways for people to see help.  As you said, it’s really filled with people who know exactly what it’s like.  For me, I joined this online support group.  I know that for me it made a huge difference because it was really filled with people who can identify with your experience, who can really get you.  In my experience, it has been not only really helpful, but it also is something that can help partners, as well, right?  For example, you could be going through cancer, it could be great for partners to talk about their life, in general.  You don’t have to go and specifically hear things that might be really personal to you, you can just talk about whatever you feel comfortable with. Jeff:                             100%.  Peer support.  Whether it’s one-on-one, whether it’s one connection or whether it’s going to a group meeting.  Whatever it is, it’s a powerful piece of therapy.  There are things that a peer supporter can do that a clinician or a psychologist, no matter how well-trained they are, can never do.  It’s that shared personal experience, which is such an important ingredient.  Unless you’ve gone through that journey, as you’ve just said, it’s difficult for people to validate someone’s experience.  If you’ve done it yourself, you can share that.  There’s a level of understanding.  The mechanisms we try to understand, but that shared personal experience is something very precious and peer support as we’ve just been talking about is a very important channel for people diagnosed with cancer. Joe:                             Absolutely, Jeff.  Speaking of the power of experience, did you think any of that, the challenges that we go through for those of us with cancer, are there any challenges that are kind of unique to us here in Australia, do you think? Jeff:                             Look, we’re all people.  We get diagnosed with a life-threatening disease, of course that’s a challenge for us, then our cultural, our ethnic backgrounds.  Our psychological makeup, our social circumstance, all of those sorts of things will help mediate that response.  In Australia, we share with some other countries.  Our geography can be a challenge for some, for sure.  We’ve got people in remote communities, we do know from our research and evidence that sadly even in Australia, our country, our regional friends, colleagues and family members don’t do as well when a diagnosis of cancer is made.  For a whole range of reasons and some of which we’re still struggling to understand. Geography is an issue.  Certainly, we have vulnerable populations, like other communities and countries in the world too.  Some of our indigenous Australians, some of our migrant populations with language barriers.  We have those issues, as well, but we’re not unique in sharing that.  Countries all around the world have their own particular issues.  What’s important is to try and share the knowledge globally so that we can all work out what works where?  How do we make a difference?  Then make sure we apply that as can in each of our own communities. Joe:                             Yes, absolutely, Jeff.  I guess that also speaks to what we touched on earlier, is that there are so many different aspects around it, and we want to be able to manage them well, just in terms of specific situations. Jeff:                             Exactly right.  I think we as a community need to just understand that, certainly the health professionals in our community need to understand that.  We just need to look at ways.  For us, a big issue right now is how we share the benefits of our technology equally throughout Australia.  Why is it that regional cancer patients don’t do as well?  What do we have to do to make sure that they share in the benefits of technology and communications and research, as well as people living on the eastern seaboard or in southwestern Australia around Perth?  Those are the sorts of things that we’ve got to address along with others, of course. Joe:                             So true, Jeff.  Speaking of different perspectives and the way people perceive things.  I was reading a research paper called: Not all prostate cancer is the same.  I was really struck by the significance of just how diverse prostate cancer can be, just in terms of its aggression and how we need to look at it through the perspective of supporting really the patient’s wellbeing and really making decisions about their treatment.  What’s your perspective around that? Jeff:                             You’re right.  Not all prostate cancers are the same.  There is lots of work going on to try to better inform how we identify different types of prostate cancer.  Those which are slow-growing and are really not going to do much, best to leave them alone.  Then those which are aggressive and there are differences.  Of course, overlayed on that, there’s a whole range of treatment choices for prostate cancer.  There are decisions to be made.  Again, what’s critical is for the person with prostate cancer, the man on this occasion, the person with prostate cancer being close to their clinician, to their general practitioner and to their healthcare team to gather information.  That’s really important, to get good information.  To have a good relationship with your healthcare team and make sure that you cultivate that, so that you can get support in making decisions and making choices, so that you have the best quality choice you can with the information at hand at that time about your treatment. Joe:                             Yes, absolutely.  It’s all about choices and that’s something that continues to come up in our conversation.  That makes a lot of sense to me.  Listen, Jeff, I know that one of the areas of focus that you have is really survivorship.  Do tell me about what some of the latest research is that you’ve done around that.  What does it really mean for a man with prostate cancer? Jeff:                             Joe, I’m glad you asked that question.  Survivorship is critical.  Just to put it in perspective a little too and I’ll talk about Australia at the moment, our figures, but in Australia, we have some of the highest incidence rates of prostate cancer in the world.  The highest numbers.  The two biggest risk factors still for prostate cancer are age and family history.  In Australia, there are more men and we’re all getting older as a population.  The numbers of men dying with prostate cancer in this country in terms of absolute numbers is going to increase.  There are going to be more and more men out there with prostate cancer.  The flipside, happily, in Australia again, for example, our survival rates, five-year survival rates is a statistic.  We spoke about this earlier, Joe, but I’ll use one now, our five-year survival rates which is a benchmark we use to see how well we’re going, our five-year survival rates are among the best in the world, as well. We’re world-leading in that because our clinicians, our doctors, our nurses, our allied health people, the health system is doing a great job.  It means that we’ve got more men being diagnosed and we’ve got more men living longer.  Much longer with this disease than they ever were.  Survivorship has never been more important.  We’ve got more people out there that are living longer after a diagnosis of prostate cancer and for some of them, of course, there will be ongoing issues to do with physical side-effects, sexual function, incontinence, pain, as well as social/emotional/psychological side-effects, potentially.  While it’s important, it’s critical, we want people with prostate cancer to live longer.  We want to make sure that we improve life expectancy, but we also want them to live well. That’s where the survivorship comes in.  To make sure that they live well, quality of life.  We’ve been working hard on that.  We’ve developed new support and a lot of consultation with clinicians and survivors and partners.  Prostate cancer survivorship essentials framework, which has identified six key elements of survivorship.  What’s important in this new framework is the role of personal agency, which is in the middle of it, which is about an understanding by the prostate cancer survivor themselves.  The man in this case understanding there’s actually a role for that in this and not to be passive and to help understand how personal agency can improve that survivorship experience for people after diagnosis. Joe:                             It’s so crucial that you bring it up, Jeff, because this personal agency really to me speaks to that crucial feeling for a man is really to feel like they’re in control of their life.  To feel that they’re making active decisions.  They’re doing something.  Earlier, as you were talking about having the problem focused approach, to feel that you are doing something in order to have the life that you want. Jeff:                             100%.  That’s right.  We spoke about that earlier.  There are things that we can do.  There are things that individuals can do to understand what’s going on around us.  That issue about personal agency, the connection with the healthcare team.  Understanding the information, being a part of that decision-making process.  Trying to influence that in ways that would actually reflect your own personal preferences and approaches can make a difference.  Personal agency is a concept that we’ve added to the framework.  It includes health promotions.  Looking after yourself.  Evidence-based interventions.  If you’re going to try and do something and seek our ways to improve your own quality of life, it’s important to look at ones where we know there’s evidence.  There are a lot of things out there, but we’re not quite sure they all work.  Vigilance. There are things we can keep an eye on, for the healthcare team and for the person.  If you’re meant to be going and having tests, we’ve got to make sure the healthcare team, even things like distress.  Check on people’s psychological wellbeing from time to time from a vigilance point of view.  Care coordination is crucial, too, Joe.  Making sure that everyone is a part of that care program or the healthcare team actually coordinates so that men get the right care in the right place at the right time and don’t fall through the gaps, which is critical, as well.  The other thing we’ve already spoken about is that shared management. It’s a partnership between the patient and the healthcare team and their families and who’s got what roles where and how you ensure the best possible outcome for people.  We have a framework for survivorship with personal agency at the centre and we’re actually promoting that as a way for policy makers and health systems, for clinicians and for individual cancer patients and their family members to approach survivorship care. Joe:                             Yes, that makes total sense, Jeff.  It makes me also think back on what we talked about earlier about partners, because I often feel that sometimes partners don’t get the recognition or the support that they truly deserve because we don’t look at them because they don’t have the cancer.  Yet, they are often doing so much work and supporting their loved one through cancer.  I know you’ve done a lot of work on researching the impacts on all that cancer can have on partners and the community, as well.  Tell me more about how cancer can impact that around us? Jeff:                             Well, Joe, you’re 100% right again.  For example, we need to understand that cancer impacts that individual who’s received the diagnosis, of course, but it has significant impacts on partners and families and close friends and relatives.  Sometimes on whole communities.  We’ve seen stuff where a much loved and respected community members have got a diagnosis of cancer and it’s impacted whole communities.  It’s important to understand that.  We know from research, for example, female partners of many cancer patients actually report higher levels of psychologist distress than the person with the cancer themselves.  This may be mediated a bit by gender differences and how women tend to express distress, but it reinforces your point.  That a cancer diagnosis needs to be seen as having an impact beyond the person themselves.  There are, once again, support services and programs that we can work with and encourage coping, effective coping for partners.  The first step is to acknowledge and recognise that this can be an issue, that is does happen.  That’s where awareness out there is critical.  Partners and families 100% are impacted by a cancer diagnosis. Joe:                             Yes, absolutely, Jeff.  We also talked about some potential challenges that we might have here in Australia and that might be with just how geographically diverse we are.  It also makes me think about technology.  How can we harness technology in a way that really helps to connect people with support that they need?  If so, how can it do that?  Are there any barriers you have observed to take that up, really? Jeff:                             First up, technology, we’ve been using it for a while in different ways.  For example, we’ve had telephone-based peer support programs for some time.  We know they work, and they’ve been out there, where we connect via telephone, people who have had a cancer experience with newly diagnosed people.  All of the evidence and evaluations, it’s a truly good invention.  We’ve had telephone-based nursing stuff.  You will have heard about telehealth and telemedicine and that was all commencing and in play and doing well.  It’s a critical part of service delivery without a doubt.  Notwithstanding all of the impost and the troubles caused by Covid-19, perhaps a silver lining to some extent is it has fast-tracked our approach to delivery of remote health services around the world.  We know now.  It’s normalised remote delivery of services much more quickly than probably would have happened otherwise.  It was probably going to happen, but it’s happened much more quickly. We see much greater acceptance now and a much greater prevalence of remote delivery services via telephone, via websites, via webcast, or via all other sorts of technologies.  People’s willingness to accept them, experiment, try these has also improved.  It’s given permission to people to try these things.  We know they work.  Can I just tell you, for example, we’ve done research some years ago now and there is plenty of evidence out there to support this that telephone-based psychological services by a trained psychologist for most patients can deliver the same therapeutic impact as a face-to-face psychological intervention.  Now, there are always exceptions.  There are going to be certain circumstances or issues or challenges or problems which we better deal within a face-to-face environment.  That is always going to be the case. Do you know what?  There are a lot of things that we can deliver remotely, and we know that.  As we’ve said, in Australia, that will be a relief for our friends in the regions who won’t have to travel long distances.   My only warning about this is, once again, there are some things, particularly depending on the diagnosis and depending on issues that people are facing, there are some things that will always require face-to-face interaction.  What’s important for us is to recognise that for most people, we can address their needs in different sorts of ways and then we can continue that referral process.  If people need more face-to-face activities or more intensive stuff, then we can at least identify them through that screening process and then start that referral process to make sure that they’ve got the service they need. Joe:                             Absolutely.  I’m so relieved to hear what you say about the efficacy of remote services like over the phone or video because not only for the regional people who are living in the regional areas, but in the times that we live now, with the pandemic, where in many ways, we are forced to be in our homes or not travelling and getting that quality support, whether that’s a psychologist or something else.  I think it’s so crucial. Jeff:                             It is.  We are facing an awkward period.  We’ve not experienced this before as a community.  It’s important that we as a community look to build on those interventions and approaches and channels we’ve currently got which allow us to get to people remotely.  At the same time, look for new and innovative ways to deliver services.  We need to focus on that.  That’s got to be a priority for us.  It’s good to see that the community at large is embracing that, and the health professionals too are committed to patient welfare and they’ve made it a priority. Joe:                             Fantastic, Jeff.  Thanks for sharing that.  Jeff, I heard that you’ve recently been appointed president elect for the union for international cancer control.  Congratulations, Jeff. Jeff:                             Thank you, Joe.  Yes, well, it’s terrific.  The UICC is a global peak body for cancer control organisations.  It’s based in Geneva.  It’s been around for 85 years.  It was founded in 1933.  It’s a terrific honour for me.  Can I say, Joe?  It’s an honour I need to share widely because I’ve been in cancer control for three decades now.  I’ve learned every day from friends and colleagues and professionals that I come into contact with.  Most importantly, I’ve learned lessons every day from interaction with cancer patients and their family members and friends.  These are the lessons that motivate me and inspire me to continue in this line of work.  This UICC appointment, I’m delighted with it and I’ll be using it, I can assure you and your listeners, to leverage everything I can to improve cancer control outcomes in Australia, but, of course, more importantly, globally, as well. Joe:                             Yes, that’s fantastic to hear, Jeff.  Congratulations on that.  What are some of the things that you hope to achieve there? Jeff:                             This year around the world, they’ll be about 18 million people diagnosed with cancer.  It’s a big number.  This year, around the world, they’ll be about 9.5 million people die from this disease.  That’s a tragedy and we need to do something about that and we’re working at it.  Those numbers, as we look at them now, they’re going to go up.  For example, we estimate that by 2030, which is 10 years down the track, that 9.5 million deaths each year will be 13 million. Joe:                             Wow. Jeff:                             That’s another 3.5 people every year who’ll die from this disease.  As we’ve spoken about, that 3.5 million mothers or fathers or sisters or brothers.  That’s 3.5 million additional people.  We need to work on these things.  The concerning stat is that of that 13 million deaths we’ll see in 2030, about 80% of those will be in low to middle income countries around the world.  There’s a job to be done in equity.  There’s a job to be done in sharing the technology, in sharing the benefits.  That remains an issue for the UICC and do you know what?  We spoke about it earlier, it’s still an issue for us in Australia too.  How do we bring together that global community, that global cancer control community to make sure that we fund the right research, and we share the benefits of that research well? That we improve treatments and make them readily available no matter which country you live in.  Those are important issues for us.  Another important project we’re looking at.  We’re working very closely with the World Health Organisation on the elimination of cervical cancer program.  Can you imagine that a world that’s free from cancer of the cervix?  This is something we’re actually looking at.  It’s something we’re working towards.  It’s a possibility.  We’re delighted in that. Joe:                             That’s fantastic, Jeff.  So relieved to hear that you’re tackling these huge issues around cancer.  Thank you for doing that.  Thank you so much for being here, for sharing your perspective and your expertise, as well.  Thank you, Jeff. Jeff:                             Thank you, Joe.  I appreciate it very much.   Don't Forget To Sign Up for Your 7 Day Challenge to Take Your Life Back After Cancer!People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today: #btn_1_5095f450e13754607e74fd13894c14a2 .text {font-size:16px;color:#ffffff;font-weight:bold;}#btn_1_5095f450e13754607e74fd13894c14a2 {padding:5px 25px;border-color:#000000;border-width:1px;-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;background:#38b6ff;background:-webkit-gradient(linear, left top, left bottom, color-stop(0%, #38b6ff), color-stop(100%, #38b6ff));background:-webkit-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-moz-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-ms-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-o-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:linear-gradient(to bottom, #38b6ff 0%, #38b6ff 100%);filter:progid:DXImageTransform.Microsoft.gradient(startColorstr=#38b6ff, endColorstr=#38b6ff, GradientType=0);box-shadow:0px 1px 1px 0px rgba(0,0,0,0.5);}#btn_1_5095f450e13754607e74fd13894c14a2 .gradient {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .shine {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .active {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .hover {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}Sign Up Today I will never give out your email - view my Privacy Policy  

In this episode of Simplify Cancer Podcast, we talk about better ways of dealing with cancer during the pandemic, coping with uncertainty, and reducing the risk of severe infection. This is particularly crucial in the time of COVID-19 pandemic. Our special guest is Dr Christopher Steer, a medical oncologist who specialises in helping older adults with cancer, and here is what we cover in our discussion today: Balancing your risk of infection with need for anti-cancer therapy Separating myth from fact on boosting your immune system Finding the better care for older adults Where to turn to for expect advice in this uncertain time The missing link of psychological care through cancer and much, much more! Links Full episode transcript (PDF) Don't Forget To Sign Up for Your 7 Day Challenge to Take Your Life Back After Cancer!People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today: #btn_1_5095f450e13754607e74fd13894c14a2 .text {font-size:16px;color:#ffffff;font-weight:bold;}#btn_1_5095f450e13754607e74fd13894c14a2 {padding:5px 25px;border-color:#000000;border-width:1px;-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;background:#38b6ff;background:-webkit-gradient(linear, left top, left bottom, color-stop(0%, #38b6ff), color-stop(100%, #38b6ff));background:-webkit-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-moz-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-ms-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-o-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:linear-gradient(to bottom, #38b6ff 0%, #38b6ff 100%);filter:progid:DXImageTransform.Microsoft.gradient(startColorstr=#38b6ff, endColorstr=#38b6ff, GradientType=0);box-shadow:0px 1px 1px 0px rgba(0,0,0,0.5);}#btn_1_5095f450e13754607e74fd13894c14a2 .gradient {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .shine {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .active {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .hover {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}Sign Up Today I will never give out your email - view my Privacy Policy Episode Transcript: Joe:                             As a medical oncologist, I know that you are deeply involved in cancer treatment, in follow-ups, in research, in clinical trials, Christopher, what impact have you seen with the pandemic so far? Christopher:            We have a large number of patients from regional Australia coming to receive standard chemotherapy and immunotherapy and radiation and follow-up in our centre.  Of course, patients need to travel to have their treatment to our centre.  That is the first issue. As you may also be aware, patients with cancer tend to be older.  The average age of patients with cancer in Australia is 67 years at first diagnosis.  That means a significant number of our patients are older.  Here we have a large number of patients older, having to travel to our centre for treatment. I would say rightly so, that because our patients are going to be at risk of more severe infection should they contract the virus.  We need to remember that we’re all at risk of contracting the virus and the only thing that we can do to prevent infection and not be infected by it is not to be infected with it.  The only thing that we can do is practice social distancing and good hygiene.  Good hand hygiene and other practices that we’re all well aware of now.  There is no prophylactic treatment.  There’s no treatment once we get it.  We need to remember that the only thing that we can do is practice good physical distancing and hygiene.  What does that mean for our patients coming to the cancer centre?  They need to visit us as a centre and that would be mean coming in contact potentially with other people. Certainly, for the patients with treatment, that’s unavoidable.  We don’t currently have a service where they can have treatment at home.  For the patients who aren’t on treatment, of course, we have pivoted to tele-health as much as possible.  We’re providing telephone and video consultations for our patients as much as possible.  As a regional cancer centre, as a medical oncology unit, we are quite used to doing this already.  Tele-health is a core part of my business model if you like.  Tele-health is a core part of my care.  I conduct it with my patients regularly.  What can we do for our patients?  We can stop them coming in to seeing us.  If they do need to come in for treatment, of course, we need to change our management here.  How are our patients feeling?  They are in the majority fearful of this infection, rightfully so.  Most of them are doing the right thing by staying at home, if possible. Joe:                             Absolutely, Christopher.  There are so many challenges that the pandemic brings, as you say, how people are taking it in terms of their attitudes, in terms of the risk and in terms of how you treat them.  There is also, Christopher, so much that we hear about Covid-19 in the news, what is your take and what does someone who’s potentially going through cancer treatment and going through follow-ups, what do you think they absolutely need to know about the disease right now? Christopher:            Unfortunately, as we are seeing an increased number of patients with Covid-19, mainly in Victoria, the thing that our patients need to know in this regional cancer setting is the likelihood of them having infection is low, but it needs to be thought of.  If they are worried, they should get tested.  If they have any symptoms, they should get tested.  If they are in contact with someone who has it, obviously, they need to go into two weeks of quarantine.  For patients who example on treatment, we need to be aware that often treatment does cause immunosuppression, that means lower immune systems.  We think, we’re not entirely sure, but we think that this may lead patients to be at increased risk of severe infection.  What we’re mainly concerned about for our patients is what is the risk for severe infection? We know that tends to be older adults.  We know that mainly men are more of a concern.  More men than women develop severe infection.  We know that if you have core morbidities, such as diabetes, high blood pressure, heart issues, you’re more at risk of an infection.  We think that immunosuppression and having cancer itself is something that puts you at high risk.  Therefore, we are very cautious with our patients.  However, the fear of the severe infection should not put us off adequate, appropriate anti-cancer therapy.  I think still in the current situation that people are more likely to run into trouble with some of their cancer sometimes than from a severe covid-19.  As with everything, it is a balance. We need to weigh up what the risks and benefits of the treatment are in this new environment with every patient that we see.  It is important to individualise care.  One of my mantras in dealing with my older patients is, adequate assessment yields appropriate care.  For our older adults, we know that a geriatric assessment leads to a better and adequate care and supportive care.  I think in this new pandemic, in this new environment, it’s very important to adequately assess our patients to individualise our care and make the decisions together. Joe:                             Yes, that makes so much sense, Christopher.  I love how you put it into perspective that while there is a great risk and with restrictions potentially changing depending on where you live, we should always be safe and mindful of what we’re doing and practicing everything that government and our health departments are recommending.  It’s so important to put it into perspective and to find that right balance between minimising the risk but yet, at the same time, getting the proper care that you need when it comes to cancer. Christopher:            That’s right.  Our public health experts are giving us the right advice.  Following that advice is important.  Unfortunately, the new lockdowns and border closures are important parts of managing this condition.  When patients are on what is often the most difficult journey of their life, they do not need yet another obstacle.  I think it’s important to know that a, you need to follow the advice of the experts, and that I would support the public health initiatives being taken in place.  Also, that as specialists, as cancer care specialists, as cancer care teams, people like us at our teams at the cancer centre are here for our patients.  If you’re in doubt, ask, call, but don’t just stay at home and wonder.  Get advice if you’re worried.  Ask questions.  It’s very important.  We will try as much as we can to be here for you. Joe:                             Absolutely, Christopher, that makes so much sense.  What types of questions would you encourage patients to ask you or their own specialist in this time? Christopher:            Often, the most difficult time for our patients, as you’re aware, is their first visit.  You’ve been diagnosed with cancer, the surgeon, the general practitioner has made the diagnosis and the patients come to the oncologist in the cancer centre for answers, reassurance and treatment.  The first visit is so important.  It’s where the relationship is established.  It’s where the plan is made.  It’s where the patients find out really what the problems are hopefully.  That is the most important time.  My patients need to come into my office.  Hopefully with somebody else.  The first thing I would say rather than what questions to ask would be, make sure there’s someone with you, if possible, who can help you ask the questions but more importantly, remember what the answers are.  I’ve had one patient today say, well, you should have someone to join you to help ask the questions and listen to the answers and then another person to write them down. The team, now, we have a team to care for you, but often it is the team of the family or the spouse or friends.  Sometimes a neighbour.  Someone who’s there for you as part of your team.  If you’re a patient coming for the first appointment.  I can’t stress it more often.  My heart sinks when I got to the waiting room, I call a name and one person walks on their own to my office and they don’t have someone with them in support.  That happens for many reasons.  Sometimes there is nobody to support the patients.  Often down this very difficult journey, you need help and support, and I would say it’s really important to have someone with you.  Yes, they can ask questions, they can listen to the questions and write it down.  Write down your questions before you come in, if possible.  There are a number of different sites.  The Cancer Council provides a good list of questions for your oncologist before you come in.  What kinds of questions should you ask? Of course, what cancer do I have?  What is the stage?  What are the treatments?  Really, it comes down to what my answers are.  What are our options?  What are our options for treatment and care?  Usually, I would go through those including ones which people might think are possible, for example, surgery, even when the situation is not operable.  You need to say, yes, we would like to do surgery, but for this reason, we can’t.  Things like that.  Go through every option that the patient might think about and then hopefully they will leave the appointment with an informed opinion about the way forward, a proper plan.  Then someone who’s also witnessed that, and they can talk to them on their way home afterwards.  That’s what I see as some of the vital things that happen at that really important first appointment. Joe:                             It’s just such a critical thing that you raise, Christopher.  I remember when I went to see my oncologist for the first-time getting treatment, I have almost no recollection of the first conversation whatsoever.  I was just happy that I did have my wife and my mum with me to be there and support me.  Also, just figure out what we need to do next.  I’m really glad that you’re bringing this up.  Christopher, is there anything that you think at this time, as well, that people want to be asking yourself or the specialist with respect to follow-up appointments or treatment with the pandemic?  How does tele-health work?  How does all of that fit in? Christopher:            People often ask, what can I do?  What can I do to help the treatment?  What can I do to stop the cancer coming back?  Certainly, one of the things that I say to my patients in advising them about whether or not they should have treatment at all.  First of all, follow the experts and have the treatment if that’s the best thing for you.  Then if you are on treatment, or even just in follow-up, what can you do in this pandemic to help yourself and avoid the infection and avoid the seriousness?  Of course, follow the advice of the experts as we’ve said.  Physical distancing, meaning staying away from people.  Hand hygiene.  Other things, when there are areas of high community transmission and masks may well be something that we would be recommending. Currently, it’s not standard and there’s a lot of debate about that.  If you apply masks with, and this is cloth masks, not the full-on respirators, but cloth masks with physical distancing.  Then there are some studies to suggest that that is something extra that you can do to first of all stop you from getting the infection, but if you do have it, if you’re unfortunate to have it, then you can stop it from passing onto others.  There is evidence that masks help, but only in certain circumstances.  They’re currently not recommended in general hospitals, for example, here in the regions, in our cancer centre where there is no community transmission.  There are simple physical things.  Unfortunately, there are no drugs you can take.  People say, could I do anything to boost my immune system? Well, exercise, diet, get plenty of sleep.  These are simple lifestyle things that you should be able to do to boost your immune system.  I do not think that there is any evidence that there is a medication, unfortunately, so-called natural remedies as something you can take to boost your immune system.  There has never been any trials or science to show that is possible.  Simply lifestyle factors, such as good exercise and sleep and having a good diet would come under the heading of doing everything you can. Joe:                             Yes, absolutely, that makes perfect sense, Christopher.  I really like how you speak plainly to it and I think this is what we all need to hear.  What are some of the things that I guess older people need to consider as they adjust to life after cancer diagnosis? Christopher:            Our older adults and for this we’re talking about often patients over the age of 70 years, let’s say, for example, are at risk of developing cancer and then once they develop cancer, often due to the presence of core morbidities and other issues, risk from the complications of the treatments and are at risk of having more problems with just the cancer itself in many ways.  Despite that, as I say, if we assess outpatients adequately and adequately manage their core morbidities and give appropriate supportive care, I do not think that older adults should be denied appropriate treatment, even curative treatment.  A difficult treatment if they’re fit enough.  We should not treat our patients on the basis of age alone at any time.  Yes, people who are over the age of 85/90 are often frail, but not always.  Frailty as a concept is something we could talk about at length and fits into the assessment scenario. In general, our older adults need to be treated with respect and treated appropriately.  Now, what can our older adults with caner actually do to help themselves through their journey?  First of all, they have some support, ask for help if needed.  There’s so many supportive medicines and things that we can give to try to get through the treatment toxicity, such as good anti-sickness medicines, as you’re well aware.  Medicine sometimes for the bowel problems that people sometimes get on anti-sickness medicine.  There are things we can give to help them through the journey and though the side-effects. We can give things; we can do things to help our older patients through their journey. Then, of course, there are the teams.  There are supportive care teams.  Nurses, the allied health social workers, the teams of people often in the cancer centres who are there just to help our older patients.  There are regular GP visits, for example.  There’s keeping everyone in the loop and keeping the supportive care team together.  Then what can you do for yourself as an older adult?  Well, keep active, keep healthy.  Keep exercising.  Now, that is difficult in times of social distancing, and physical distancing, but keeping active is crucial.  At the same time, of course, in this pandemic, unfortunately, keeping away from other people as much as possible is difficult.  Here we have a number of challenges, but there are certainly many things we can do.  Where can you go for advice?  Well, as I say, the cancer council helpline is something we would recommend, but there will be a local cancer care coordinators, often oncology nurses, your doctors, and your GPs who’ll be able to provide you with good solid scientific advice to help you on your journey. Joe:                             Yes, absolutely, Christopher.  I think it speaks to a lot is finding the courage to speak up and ask questions.  I remember from my own experience that it really mirrors exactly what you are talking about, that there is a lot of potential side-effects, which can be managed or helped when you ask the right questions of the oncology nurse and you try to understand what’s happening or when you maybe try to ring up your specialist and say, hey, what’s going on here, so you’re able to really understand what is happening.  That takes away a lot of the worry, a lot of the fear.  Whether you are in active treatment or maybe you’re living with cancer or perhaps even when hopefully you’ve passed active treatment and you’re in the survivorship stage.  Do you notice that that gives people a greater sense of control over their lives or to restore some of that calm, do you think? Christopher:            That is such an important issue.  I think the sense of control.  Patients who sit in my office talking to me, they are often faced with something for the first time in their lives, they cannot control.  The cancer is often something that you can’t just wish it away and you can’t control it without help.  Sometimes even without treatments, they prove to be uncontrollable.  That is a very important concept, which we do need to recognize.  I think it goes back to what we might have said earlier about what patients feel they can do and against the cancer or more so for themselves to help feel like they might bring some control back into their lives.  Be it exercising and feeling better and getting fitter enough to have that treatment.  Simple things like that.  Something which will give them more control over this journey that they’re on.  I think that is a vital thing.  Other experts can help them bring that control and even help them through look at what’s important for them would be psychosocial support that the experts in the cancer centres can give. Now, unfortunately, our wellness centre here at the hospital is closed.  Now, this is an important organisation formed by the patients with volunteers but through community support, they’ve been able to fund, for example, a full-time psychologist, who is so busy helping each individual patient through their journey from a psychological perspective.  The concept of psychology and that effort of support is so important.  Our community has recognised this.  Unfortunately, our health service is unable to fund it fully and so, through amazing donations from our local community, the organisation that runs a wellness centre is able to fund a full-time psychologist.  We really need two in our centre. Of course, with the pandemic, the problem is that face-to-face visits are somewhat difficult, but our psychologists have also pivoted to tele-health and that has been very effective and she continues her really important work in our region to look after the mental health of our patients as they go through their journey.   It’s very important. Joe:                             Absolutely, Christopher.  I couldn’t agree more.  I remember when I was in my oncologists’ office and he laid out different treatment options.  He said, we can go with chemotherapy, we can go with radiation.  Here are all of the pros and cons.  Have a think about what you want and then you can decide.  I was like, how do you expect me to decide?  I’m just some guy.  You’re the professional.  They took me a while to really come back to understand how empowering that is for the person who is dealing with cancer themselves to make decisions because I think it gives you some measure of control and it speaks to what you’re talking about, to what matters to you.  What is important to you and to your life? Christopher:            That’s right.  These decisions are important, but as you rightly say in your own circumstance, they can be overwhelming.  If possible, I try and give my patients a framework in which to base their decisions on.  Listen to them carefully, try and determine what matters most.  Equally, they often provide more options.  It’s a really complex decision and I come back to the first consultation issue that we raised in the beginning.  Sometimes the things that matter most to the daughter of the patient is different from what matters most to the mother who is the one facing the decisions.  You have to factor in these complexities in the family relationships and the different people in the room when you’re guiding people through these difficult decisions. That can be overwhelming but are really important because we’re talking often about people with incurable conditions who are going to be certainly my patients for the rest of their lives.  I need to get to know them and help them through these at times overwhelming decisions.  These are in ordinary times very difficult to make.  Here we are in Covid-19 pandemic when we’ve got to work out whether our treatment puts the patients at more risk of severe disease.  Yes.  My other thing that I say about older patients with cancer is, these things take time.  I cannot rush these kinds of decisions.  Sometimes you need more than one visit.  It takes time to assess our patients adequately, give them the options, listen to them and then finally find the right treatment path for the individual who’s with you. Joe:                             Christopher, what about the cancer survivors?  Are they at a greater risk of being impacted by Covid-19?  What is the greatest impact or consideration there? Christopher:            Joe, how do you define a cancer survivor? Joe:                             Cancer survivor, I would define it as anyone who has finished active treatment. Christopher:            Yes, so there are a few definitions around this, which is why I ask because some people think that a cancer survivor, your survivorship journey starts when you’re first diagnosed.  You’re a cancer survivor from day one, very important to have your flu vaccination, so you don’t get another infection to put you more at risk of the issues with Covid-19.  That comes back to doing everything you can for yourself. Then as you go out and your immune system is picking up and you’re seeing the doctors less, really.  Often, the situation is you’re back to relative normal from a Covid-19 severity perspective unless those things you’ve got you can’t control.  Like, you’re older, you’re a bloke, you’ve got other core morbidities, any of that stuff happens.  Then yes, you need to stay away from the risk of getting it as much as possible.  Then we have visiting the hospital less and using telehealth to stay at home and have your care.  We’re here for you, even after you’ve finished your active treatment, make sure if you have a problem and a question that you seek help either through the GP or directly with our clinic.  If you have a question, don’t be scared of it because we’re here to help. Joe:                             Absolutely.  Christopher, how important is it to get tested for coronavirus if you do feel unwell? Christopher:            Yes, well, the current advice in the Australian context is that testing is vitally important.  That testing is available.  Testing does not cause significant side-effects in the self, if you like, it is uncomfortable.  It is a very long cotton bud, if you like shoved to the back of your nose to get those important cells at the back of the throat, which harbour the virus if they’re there.  You’ve got to get an appropriate sample.  It’s not comfortable.  However, it’s important to have the tests.  The current advice would appear to be that if you have any symptoms at all concerned, then have the Covid-19 test.  It’s vitally important.  Don’t come to hospital if you feel sick.  That sounds weird, doesn’t it? Joe:                             Yes. Christopher:            Ring first.  Don’t just share it around.  Think about it.  We’re going to have to think about this very carefully now.  I take part in a survey every Monday morning.  It’s a flu survey.  It’s an influenza symptoms survey.  I’d have to check the actual address because in my mind, I don’t have it.  Every Monday morning, I get asked a series of questions and there are 70,000/80,000 people who are involved in this survey every Monday morning.  It asks whether you have a sore throat, temperature, cough.  It’s usually used for influenza monitoring.  You can see in previous years; the influenza has been quite high.  This year, with all of the physical distancing, the rates of the normal influenza are really low and the rate of the symptoms around Australia and New Zealand are really low. It shows the power of physical distancing to avoid these kinds of symptoms and these kinds of illnesses.  I think the other side of that is, when is business as usual and we all go to work with a bit of a sniffle, with a bit of a cough or feeling unwell.  Business as usual says, you’ll be right.  Well, we show that it’s very easy to pass on these kinds of respiratory illnesses to each other.  The rates of infections are quite high.  That’s part of what we’re used to.  Maybe that’s going to change in the post-pandemic era.  Who knows? Joe:                             Yes, that might be one positive thing that comes out of this, is how do we manage it going forward?  Christopher, what are some of the best ways, I know we kind of touched on some of that already, but what are some of the best ways to keep yourself in good shape during the pandemic, especially if you’re an older person who’s living with cancer? Christopher:            Once again, Joe, I think we need to think about this in a physical fitness and in mental fitness.  How do you stay in shape physically and mentally?  Such a great question.  Like cancer care, it’s individual.  It depends on who you are, how fit you are already, and what you like and what type of person you are and what kind of support you have, where you live?  These kinds of things still of course need to be factored in.  I find it interesting that in these studies of exercise in patients with cancer, often it’s the patients who are the frailest who benefit the most.  They’ve got the most to gain.  It’s the most interesting when we look at these studies of exercise in people before a big operation, for example.  In studies of pre-habilitaion rather than rehabilitation.  We find that it’s the patients who are almost most at risk that have the most advantage. Another thing, don’t just assume that if you’re frail you don’t benefit from it.  Even simple exercise, such as strengthening the core muscles, for example.  I think activity is good, certainly not being active is better.  I think how you keep in good shape, clearly staying physically active, eating the right things, getting enough sleep, that’s important.  Then mentally, as we touched on, it is going to be hard on everyone.  Some of these catchphrases, like we’re all in it together, well, they’re okay to be said, but really when it comes down to it, there’s an awful lot of loneliness out there, ordinarily.  There’s an awful lot of people now having to stay alone, unsupported and fearful of any physical interaction.  This is an awful and interesting new time that we find ourselves in. Mental health and support of people mentally through as many avenues as we can is vital.  There’s probably a lot of trials looking at this.  I know psych oncology is a really important area that we touched on already.  Psycho-oncology in the Covid pandemic becomes so much more important as we all battle through this individually with or without our support.  We need to be agile but also remember that we will sure be able to continue care for our patients as much as possible with as much continuity as possible and given the care that they need despite these challenges. Joe:                             Thank you so much, Christopher.  Thank you for your time.  Thank you for just what you do in the world in supporting cancer patients and cancer survivors in such a difficult time. Christopher:            Thank you, Joe.  Pleasure to be here.   Don't Forget To Sign Up for Your 7 Day Challenge to Take Your Life Back After Cancer!People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today: #btn_1_5095f450e13754607e74fd13894c14a2 .text {font-size:16px;color:#ffffff;font-weight:bold;}#btn_1_5095f450e13754607e74fd13894c14a2 {padding:5px 25px;border-color:#000000;border-width:1px;-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;background:#38b6ff;background:-webkit-gradient(linear, left top, left bottom, color-stop(0%, #38b6ff), color-stop(100%, #38b6ff));background:-webkit-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-moz-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-ms-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-o-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:linear-gradient(to bottom, #38b6ff 0%, #38b6ff 100%);filter:progid:DXImageTransform.Microsoft.gradient(startColorstr=#38b6ff, endColorstr=#38b6ff, GradientType=0);box-shadow:0px 1px 1px 0px rgba(0,0,0,0.5);}#btn_1_5095f450e13754607e74fd13894c14a2 .gradient {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .shine {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .active {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .hover {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}Sign Up Today I will never give out your email - view my Privacy Policy  

In this episode of Simplify Cancer Podcast, we are talking to Damien Bolton, a clinical professor at the University of Melbourne and head of Austin Urology Unit here in Australia. Damien is passionate about improving quality of life and the outcomes for patients with prostate cancer, and here is what we cover in our discussion today: The big misconception about prostate cancer How to recognise your own support needs when living with cancer Removing emotion from decision making Why support is crucial through cancer and much, much more! Links Full episode transcript (PDF) Don't Forget To Sign Up for Your 7 Day Challenge to Take Your Life Back After Cancer!People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today: #btn_1_5095f450e13754607e74fd13894c14a2 .text {font-size:16px;color:#ffffff;font-weight:bold;}#btn_1_5095f450e13754607e74fd13894c14a2 {padding:5px 25px;border-color:#000000;border-width:1px;-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;background:#38b6ff;background:-webkit-gradient(linear, left top, left bottom, color-stop(0%, #38b6ff), color-stop(100%, #38b6ff));background:-webkit-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-moz-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-ms-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-o-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:linear-gradient(to bottom, #38b6ff 0%, #38b6ff 100%);filter:progid:DXImageTransform.Microsoft.gradient(startColorstr=#38b6ff, endColorstr=#38b6ff, GradientType=0);box-shadow:0px 1px 1px 0px rgba(0,0,0,0.5);}#btn_1_5095f450e13754607e74fd13894c14a2 .gradient {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .shine {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .active {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .hover {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}Sign Up Today I will never give out your email - view my Privacy Policy Episode Transcript: Joe:                             Damien, I was really struck by the significance of this paper that you wrote called: Not all prostate cancer is the same.  Even the name alone: Not all prostate cancer is the same, Damien, what does it mean to you? Damien:                    I think there’s a key message in there that’s apparent in the title.  Prostate cancer probably more than most cancers varies enormously in terms of its aggression.  The vast majority of prostate cancers of course are the types of tumours that we can just keep an eye on and observe and that won’t need aggressive treatment.  The small number that do in turn give that group a bit of a bad name.  Most men who get diagnosed with prostate cancer will have early curable treatment and treatment that doesn’t need intervention at all.  There is this small number that present with widely advanced disseminated disease that will be fatal to them.  Our message is to try and bring that group forward in the diagnosis to when the tumour is either easily treatable or can just be followed expectedly with the understanding that men will not die of the cancer if it’s identified at that point. Joe:                             Exactly.  It seems like there’s a lot of misunderstanding from what you’re saying around this prostate cancer.  Damien, what is the most misunderstood belief around prostate cancer? Damien:                    That misunderstanding is definitely true, and you are forever influenced by the people you know who’ve had prostate cancer.  Traditionally, we’ve seen old men die a painful death, have a long and infirm course with their prostate cancer.  It’s probably the recognition of these men that gives rise to this main misconception.  I think the main misconception of prostate cancer is that if you’re diagnosed with it, you’re going to have a painful death from secondary disease in your bones, or alternatively, you’re going to have requirement for radiation or surgery that will leave you incontinent or impotent.  In fact, those are absolute misconceptions.  The vast majority of men diagnosed with prostate cancer will need either no treatment or will need treatment that gives them very little in the way of side-effects. Joe:                             Yes, that is incredibly eye-opening, Damien.  I think it certainly takes probably a lot of people aback because of this lack of awareness and understanding of prostate cancer, it can really mean that it’s diagnosed at a later stage, which can really dramatically affect the outcome of your treatment and not only that, the quality of life.  Damien, what are the common symptoms of someone who’s been newly diagnosed and how does that differ from a patient whose disease might be more advanced? Damien:                    That is a very key point in prostate cancer diagnosis.  The vast majority of men diagnosed with prostate cancer have no symptoms at all.  Indeed, if you can have it diagnosed on the basis of a simple PSA blood test and a subsequent MRI scan of the prostate, then nearly all people identified with tumour that is confined to the prostate at that time can expect to have a curative outcome from their surgery or their radiation if it’s required.  Most men with prostate cancer that’s at a curable stage won’t have any symptoms.  By the time people have got to having symptoms of backpain or hip pain or the like, by that time, the tumour has spread.  We do have very good treatments available for them, but we would encourage all men to come forward and be blood tested to make sure that no prostate cancer is diagnosed at that advanced stage. In its own way, every prostate cancer death is preventable if you can identify it at an organ confined time and treat it accordingly.  When you’ve had a career in dealing with prostate cancer, you’re always influenced by remembering the number of men that came along with advanced disease that it spread to their bones or spread to their pelvic bones, spread to their spine and spread to their hips and they’ve required radiation and ongoing advanced treatment to provide pain relief.  It’s the recognition of the difficult clinical course that those men have faced that I think drives most medical practitioners to get men to have their PSA tests done regularly and their prostate cancer diagnosed early. Joe:                             Yes, absolutely.  It sounds like symptoms also play a key part in hopefully picking up things early, even if some people may not be getting symptoms at all.  In your opinion, are there any symptoms that are commonly missed by patients? Damien:                    By the time men are in the age range where they’re at risk of prostate cancer, they’re often at an age in their lives where they’re starting to get urinary symptoms related to benign enlargement of the prostate more often.  By the time someone is noticing that their urinary stream might be slowing, that they might be having to void more frequently, that they might be having to get up to pass urine overnight.  At that stage, they’re definitely in the age range where they should have their prostate cancer risk evaluated with a blood test.  More often than not, the symptoms that are experienced will not be directly consequential upon the presence of a prostate cancer, which can be particularly small and still produce a PSA change that’s detectable in the blood test. Joe:                             Damien, I was intrigued to finally see the proof that we actually don’t remember the information received during stressful times.  For example, when you might be receiving diagnosis or discussing potential.  What is your advice for people around how to really best manage this? Damien:                    In the current society that we live in, we are all very time poor.  We like to do things very quickly and efficiently.  For the vast majority of us, if you are given a cancer diagnosis, you can’t process the full ramifications of that immediately.  The best advice for patients is to stop and think.  To reflect on what they’ve been told and to go back and speak again to their clinician and ask for more information to clarify any questions they have.  Very quickly, the most appropriate management course will become apparent because there are very standard best practice algorithms that most clinicians will operate by.  It’s very hard to process it straight away.  It’s understandably a distressing time with implications for your family, implications for work, implications for other plans you might have.  I would encourage most men to think deeply about this before they embark on treatment.  The vast majority of men if they’re given appropriate treatment will find that their tumour is totally cured either by surgery or radiation and that they’ll have a normal life expectancy that they would have had even if they didn’t have the diagnosis of prostate cancer. Joe:                             Yes, Damien, I think it’s such a vital point that you raise in terms of having to stop and think and having to process it all and come back for more questions.  I know that when I got my cancer diagnosis, I completely forgot everything that was discussed in probably the first appointment.  Just completely flew out of my mind.  Thank you for recognizing the voice of the patient and the different needs that we all have.  Damien, for a person that’s living with cancer, what advice do you have on how they really best recognize their own needs for information and for support and where should they turn for that? Damien:                    It’s extremely intimidating to be given a cancer diagnosis.  It impacts on yourself in so many ways.  Emotionally in terms of your relationships with others, in terms of the recognition that you’re going to need ongoing interaction with different people in the healthcare sector.  The most important bit of advice you can give to someone in that circumstance is to slowly go through and recognize all of these changes that might need to be made or might need to be either just recognized with the realization that you might not need to adjust your life because those things are not going to be relevant to you.  For the sake of example, someone who will get a diagnosis of prostate cancer, the first thing they might think of is that they’re going to need extensive chemotherapy.  When, in fact, that is not the case for the vast majority of men with prostate cancer who were diagnosed hopefully at an early stage. It’s often important to write a list, even not just itemising the changes or the different treatments that are going to be required, but how they’ll impact upon the hobbies you might have, plans for travel, plans for meeting up with friends in terms of other commitments you might have for your family.  Your relationships with extended family or children who might need to be made aware that you have this diagnosis if there’s a strong family history of it.  It’s important just to be methodical and sensible and deal with these in a fashion that takes the emotion out of it because the truth is, with appropriate treatment, most men will be cured from it, and dealing with all of these other aspects of it is just a component of that holistic care that should provide the best outcome. Joe:                             This is such a great point that you make, Damien, I love it.  Writing things out on paper, it might seem weird or something that you wouldn’t normally do, but I think if you get things out on paper, it’s out of your head and you can look at it and be able to see what’s really going on, like you say, without emotion, right? Damien:                    I’m a big one for having a list of things and ticking them all off and knowing that the obligations you have, have been fulfilled.  Very quickly for someone with cancer diagnosis when it’s early prostate tumour specifically, they’ll see that, yes, I can deal with this problem, I can deal with the next problem.  For the sake of example, if that person is having surgery as their primary mode of treatment, they’ll be an emphasis on them learning pelvic floor exercises, which they can gain proficiency in very quickly.  People then derive some confidence and comfort for the fact that they are dealing with each of the issues that must be faced rather than the whole cancer diagnosis and treatment following them up as it’s just too much of a big problem to be dealt with. Joe:                             Yes, exactly.  It’s what the whole key theme I found in the paper that you wrote that not all prostate cancer is the same.  It’s really the empowerment of the patients.  Damien, what are the things that you wish that your patient would share more with you during the consultation? Damien:                    The key thing is for patients to have an understanding of the disease that they’re dealing with.  That’s a simple thing.  They should understand whether the disease is confined to the prostate or whether it’s advanced beyond the prostate, whether the disease is low-grade, that it may not need treatment or intermediate grade or higher, where it will need treatment.  Then they should know the different options that are available to them and the likelihood that those options are going to return them back to their normal life with the most minimal number of side-effects.  It’s also then important for patients to understand the emotional impacts on this, that they might need to rely on a partner for support during their treatment process.  It might also be important for them to understand the financial impact of it.  If someone is having treatment by radiation, for sake of example, where they might need to go along and have treatment each day for several weeks, that can have a big implication on their ability to return to work. Similarly, although, there’s less time off work associated with surgery, particularly the more minimally invasive laparoscopic robot-assisted operations, there will be time that they need away from their employment, particularly if they do heavy work or manual work, rather than office work.  The financial impact upon men who do those more labour-intensive jobs is disproportionately high in the diagnosis of prostate cancer.  It’s important that people recognize all of these issues and deal with them in a methodical fashion so that they understand the process that they’ll go through and there’s no surprises for them part of way through their course of treatment. Joe:                             Exactly.  Also, for a person with cancer, as you know, it can be really weird or even intimidating to talk about symptoms and worries directly with the medical specialist and nurse.  Even their partner, for some of us, it really doesn’t come naturally.  What advice do you have for those of us that find ourselves in that position? Damien:                    The first thing will be not to be overwhelmed by it.  To realize that numerous men have been down this path and the vast majority of them return to a normal life with very little implications of the diagnosis and treatment of prostate cancer, provided this is found at an early stage, which a simple blood test will facilitate.  Secondarily, it’s going to be important that they understand what their treatment physician is advising them to do.  For sake of example, if their doctor is advising them to undergo scanning to make sure there’s no metastatic disease that has spread to the bones or other organs.  The treatment doctor is probably doing this to dot the Is and cross the Ts of their treatment plan, not because they suspect that they will have advanced disease, which is usually uncommon at diagnosis of prostate cancer that’s PSA testing based. Similarly, when their treating physician might refer them to a pelvic floor physiotherapist to optimize their pelvic floor strength prior to treatment by surgery or radiation, it’s important that the patient really understand wat’s involved and make a commitment to practice and leave their pelvic floor exercises because your return to a normal quality of life will be much faster and much more easily facilitated by taking advantage of that education.  Then thirdly to recognize that there is no downside in asking more question and seeking more assistance.  I’m a big fan of patients seeing a counsellor if they want to discuss the implications that might happen to their family from any tumour diagnosis.  Support groups, friends who might have been diagnosed with prostate cancer.  Pretty much most men in their 50s know someone who’s been diagnosed with it.  I think the majority of men who have been treated successfully for it are very happy to be of assistance to other guys in a similar circumstance. Joe:                             Yes, that’s a powerful comment you make again about empowering people to speak up about the struggle, about their worries.  When it comes to really negative emotions that come up for you when you’re diagnosed with cancer, as a man who is really forced to confront those worries and then changes to their daily life.  To have that level of control taken away, what sort of support should you seek? Damien:                    I think a key thing is to have the support of a trusted friend or partner who you can express your concerns to and with whom you can identify a plan for dealing with them.  Often, if you’ve got questions specifically for your treating doctor, it helps a good deal to go through them and verbalise them and write them down and have them ready to deal with as a consequence of conversation with you support person for when you see the specialist again next.  That might be questions about how this is going to potentially interfere with continence?  How it might interfere with work?  How it might interfere with fertility?  All of those things are questions that pretty much every specialist will have dealt with repeatedly.  It’s a key component to recognise the individuality of those circumstances and how they’ll affect the specific instance of yourself as a patient and writing those things down and putting them forward to your treating doctor can be a great source of relief because there’s usually a very straightforward and simple explanation for the way about and way around any of these problems. Joe:                             Great.  Damien, you touched on some of the types of questions that you want people to be asking you, but really when it comes to seeing men who are just newly diagnosed with prostate cancer, what are some of the specific questions that you really hope that they would be asking you or their own doctor? Damien:                    The key points in the early diagnosis of prostate cancer are, can this tumour quite reasonably be expected to be cured by surgery or radiation because it’s organ confined?  Indeed, for most men that’s the case.  Secondarily, the key thing is how they’ll undergo a return to normal activities of life after such treatment.  That might involve education with regard to exercise generally, weight loss, pelvic floor strength, medical adjustments otherwise because people might need assistance with catheter management very briefly afterwards.  That’s a novel and new thing for most men when they’re having prostate cancer treatment.  Most of those issues will usually be well addressed by a urology nurse who is usually freely available through all of the different practices and hospitals where people would usually undertake treatment for prostate cancer. Joe:                             Absolutely.  This is incredible.  I just want to give a shoutout to all oncology nurses.  Just how helpful they are to all of us who are going through an incredibly difficult time.  Damien, I know from personal experience that it can be so hard to take that first step, to make a phone call to a helpline or to book an appointment with a specialist or to bring up a concern that you have with your doctor.  You don’t really know what to expect.  What advice do you have around dealing with the emotional aspect of cancer? Damien:                    Your point is very well-taken.  The vast majority of men in this circumstance will do well from discussing their emotional and their general needs with as many people as they can.  It’s a very good idea to discuss these with your specialist, most of whom will be very receptive to dealing with them and will have deal with these sorts of issues on numerous occasions.  Secondly, it’s often very valuable to deal with your general practitioner who will also have had experience.  It’s never a problem to get a second opinion if questions still remain unanswered.  The value of patient support groups can’t be understated. Particularly for men who might have a more advanced disease and who are going to have a requirement for ongoing therapy with hormone therapy or the like, where they’ll find numerous other men in a similar situation all living productive and fulfilling lives and where they’ll gain a lot of general support.  Similarly, there are multiple websites, particularly those from very well-respected organizations that are prostate cancer advocacy groups and the major universities, both in Australia and abroad that can provide very good information that will be extremely reassuring for lots of men with a diagnosis of prostate cancer. Joe:                             Yes, these are some incredible points that you make, Damien, I will come back to the information in a second, I just want to really come back to the support groups, I know we touched on this before already.  I’m a huge fan of it, going to online supports groups have helped me tremendously because it’s really filled with people who know exactly what it’s like and it really gives you that other perspective.  It’s fantastic obviously to have the connection with your specialist, your nurse, but also having to hear from someone who’s been in that place before and they know what it’s like, it just can give you that extra layer of comfort. Damien:                    Absolutely, men who participate in face-to-face or online support groups very clearly identify that they are not alone in their journey.  That other men have been through this on numerous occasions.  That other men are coping well with it and live a life that is very similar if not identical to how they did prior to a cancer diagnosis.  That can be tremendously empowering for me. Joe:                             Absolutely.  Going back to the information, you touched on solid evidence-based websites, it’s so hugely important in the age that we live in right now where fake news and snake oil salesmen are really making it harder to find real evidence-based advice.  Damian, how do you go about separating misinformation from the truth? Damien:                    That’s a really good topic to talk about.  Its significance is demonstrated by an occurrence that I noticed.  About five years ago, my colleagues Nathan Larenchuck and John Yaksley and I wrote an article that addressed this, which I think we called: Fake news and clickbait in urology.  We had it published in the British Journal of Urology more as the thought piece we were putting out there that identified this as a problem.  It was one of the five most downloaded articles for the year from that journal.  Demonstrating that this is a problem that so many clinicians recognise.  I would just encourage all patients to recognise that information that is obtained from reputable sites is much more reliable than someone who’s offering a quick solution that doesn’t seem to be supported by evidence.  If it’s put forward as an easy cure for prostate cancer and it sounds too good to be true, then the truth is, it probably is too good to be true.  Most men who have prostate cancer will be able to be treated well and cured without resort to fringe treatments that have very little in the way of long-term benefit proven for them. Joe:                             Damien, when it comes to dealing with information and separating myth from fact, how has that changed do you think from the perspective of the Covid-19 Pandemic? Damien:                    Covid-19 has been a huge earthquake I think in healthcare, but the consequent affect on cancer care during the Covid time I think will be the aftershock that leaves a lot of damage, as well.  It’s important for men to realize that just because someone else in the community might have Covid-19, that your prostate cancer won’t stop growing.  All men must continue to be aware of the importance of having PSA testing and following through in a methodical fashion with their treatment for prostate cancer.  Indeed, not just men with prostate cancer, this applies to people with kidney tumours, bladder tumours, women with breast cancer.  The Covid-19 of course will have a huge impact, but we’re fortunate to live in a world and in a system in Australia and indeed, in most of Asia where good treatment for cancer care is available in spite of the presence of Covid 19 in the background. Joe:                             Yes, Damien, as a medical specialist, you are so deeply involved in cancer treatment and follow-ups and research and clinical trial, what impact have you seen from the pandemic right now? Damien:                    When the Covid-19 Pandemic started, most of our clinical trials with regard to cancer and indeed a lot of laboratory work was put on hold.  At that time, there was even a freeze on applications for non-Covid 19 related research through different ethics committees.  Now that we’re getting back to full functioning of these areas and indeed, I think the understanding of the implication of Covid-19, which will be around with us for a long time, upon cancer care is something that’s going to be valuable for patients being treated for prostate cancer and other cancers in the future.  There’s no doubt that now we have a much better understanding of how we need to prioritise cancer treatment in the setting of Covid-19 being identifiable in the greater population.  In spite of Covid-19, most men are still going on to get quite appropriate prostate cancer treatment and indeed, treatment for all other cancers at the current time. Joe:                             Damien, have the guidelines for treatment changed with the pandemic? Damien:                    Not so much the whole guidelines for treatment, although, we tend to be quite specific and personalized in certain circumstances.  For sake of experience, we’re encouraging patients to have less time in hospital if at all possible.  That has involved a transition to more minimally invasive surgery, such as with robotic and laparoscopic prostatectomy rather than with open surgery.  Similarly, we’ve been encouraging people to have more in the way of short-term admission radiation therapyrather than having to turn up every day for six wees for extended external beam radiation therapy. Joe:                             Absolutely.  Damien, lastly, are the cancer survivors or maybe those living with cancer, are they more likely to be impacted by Covid-19, is there anything we need to pay particular attention to? Damien:                    Fortunately, the vast majority of men who’ve had their prostate cancer identified at an early time will be cured as a consequence of their surgery or radiation, if required, or they won’t need additional treatment other than just monitoring with PSA tests.  These people probably are not going to be impacted substantially by Covid-19 more than any other member of the community.  The group that we’re particularly concerned about is those men who’ve got advanced disease.  Those men who might have disease that’s spread and have required hormonal therapy or might have required chemotherapy.  For that group, we’re trying very hard to shield them from anyone who might have been in contact with someone with Covid-19.  That group does have an increased risk and to that end, we re-double our efforts to try and identify prostate cancer at an early, organ confined and curable stage. Joe:                             Which is more so important now than ever before.  Thank you so much, Damien, I really appreciate you time.   Don't Forget To Sign Up for Your 7 Day Challenge to Take Your Life Back After Cancer!People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today: #btn_1_5095f450e13754607e74fd13894c14a2 .text {font-size:16px;color:#ffffff;font-weight:bold;}#btn_1_5095f450e13754607e74fd13894c14a2 {padding:5px 25px;border-color:#000000;border-width:1px;-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;background:#38b6ff;background:-webkit-gradient(linear, left top, left bottom, color-stop(0%, #38b6ff), color-stop(100%, #38b6ff));background:-webkit-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-moz-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-ms-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-o-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:linear-gradient(to bottom, #38b6ff 0%, #38b6ff 100%);filter:progid:DXImageTransform.Microsoft.gradient(startColorstr=#38b6ff, endColorstr=#38b6ff, GradientType=0);box-shadow:0px 1px 1px 0px rgba(0,0,0,0.5);}#btn_1_5095f450e13754607e74fd13894c14a2 .gradient {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .shine {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .active {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .hover {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}Sign Up Today I will never give out your email - view my Privacy Policy  

In this episode of Simplify Cancer Podcast, we talk about better ways of dealing with isolation, staying in good shape during isolation, and keeping your energy levels up. This is particularly crucial in the time of the COVID-19 pandemic. Our special guest is Dale Ischia, an exercise physiologist who specialises in exercise and cancer, and here is what we cover in our discussion today: Two vital reasons to exercise in isolation  How exercise can fuel body recovery after cancer treatment Having more energy through movement Staying safe when exercising Building health habits in isolation Exercise and movement for cancer survivors and much, much more! Links Full episode transcript (PDF) Starter Exercises Program from Dale Don't Forget To Sign Up for Your 7 Day Challenge to Take Your Life Back After Cancer!People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today: #btn_1_5095f450e13754607e74fd13894c14a2 .text {font-size:16px;color:#ffffff;font-weight:bold;}#btn_1_5095f450e13754607e74fd13894c14a2 {padding:5px 25px;border-color:#000000;border-width:1px;-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;background:#38b6ff;background:-webkit-gradient(linear, left top, left bottom, color-stop(0%, #38b6ff), color-stop(100%, #38b6ff));background:-webkit-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-moz-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-ms-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-o-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:linear-gradient(to bottom, #38b6ff 0%, #38b6ff 100%);filter:progid:DXImageTransform.Microsoft.gradient(startColorstr=#38b6ff, endColorstr=#38b6ff, GradientType=0);box-shadow:0px 1px 1px 0px rgba(0,0,0,0.5);}#btn_1_5095f450e13754607e74fd13894c14a2 .gradient {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .shine {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .active {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .hover {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}Sign Up Today I will never give out your email - view my Privacy Policy    

Today, I’m talking of Darryl Mitteldorf of Malecare, a non-profit organisation that helps men fighting cancer together. Darryl is an advocate for men’s health, a clear thinker and a beautiful human being. Here are some things that we cover today: Pandemic in the USA through the eyes of New Yorker How the crisis in the United States is affecting those most vulnerable COVID-19 pandemic impact on cancer care and much, much more! Links Malecare Don't Forget To Sign Up for Your 7 Day Challenge to Take Your Life Back After Cancer!People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today: #btn_1_5095f450e13754607e74fd13894c14a2 .text {font-size:16px;color:#ffffff;font-weight:bold;}#btn_1_5095f450e13754607e74fd13894c14a2 {padding:5px 25px;border-color:#000000;border-width:1px;-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;background:#38b6ff;background:-webkit-gradient(linear, left top, left bottom, color-stop(0%, #38b6ff), color-stop(100%, #38b6ff));background:-webkit-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-moz-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-ms-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-o-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:linear-gradient(to bottom, #38b6ff 0%, #38b6ff 100%);filter:progid:DXImageTransform.Microsoft.gradient(startColorstr=#38b6ff, endColorstr=#38b6ff, GradientType=0);box-shadow:0px 1px 1px 0px rgba(0,0,0,0.5);}#btn_1_5095f450e13754607e74fd13894c14a2 .gradient {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .shine {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .active {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .hover {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}Sign Up Today I will never give out your email - view my Privacy Policy    

Today, I am talking to Raina Macintyre, an expert in biosecurity and infectious diseases. Raina shares surprising details about COVID-19 pandemic. Here are some things that we cover today: The surprising outbreak of the novel coronavirus How COVID-19 affects our immune system What you can do to lower the risk of infection and much, much more! Links Professor Raina MacIntyre | UNSW Research Cancer and COVID-19 (Cancer Council Australia) Don't Forget To Sign Up for Your 7 Day Challenge to Take Your Life Back After Cancer!People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today: #btn_1_5095f450e13754607e74fd13894c14a2 .text {font-size:16px;color:#ffffff;font-weight:bold;}#btn_1_5095f450e13754607e74fd13894c14a2 {padding:5px 25px;border-color:#000000;border-width:1px;-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;background:#38b6ff;background:-webkit-gradient(linear, left top, left bottom, color-stop(0%, #38b6ff), color-stop(100%, #38b6ff));background:-webkit-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-moz-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-ms-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-o-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:linear-gradient(to bottom, #38b6ff 0%, #38b6ff 100%);filter:progid:DXImageTransform.Microsoft.gradient(startColorstr=#38b6ff, endColorstr=#38b6ff, GradientType=0);box-shadow:0px 1px 1px 0px rgba(0,0,0,0.5);}#btn_1_5095f450e13754607e74fd13894c14a2 .gradient {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .shine {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .active {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .hover {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}Sign Up Today I will never give out your email - view my Privacy Policy    

Today, I am talking to Eva Segelov, Professor of Oncology at Monash University and Director of Oncology at Monash Health. Eva is incredibly passionate, empathetic and kind, and today she shares exactly what you need to know when you are going through cancer treatment during COVID-19 pandemic! Here are some things that we cover today: What every cancer patient needs to know about COVID-19 pandemic Competing risks: finding the elusive balance for the cancer patient How uncertainty can be a good thing when it comes to cancer How telehealth works and why it might outlast the pandemic Accessing critical support services throughout cancer treatment Potential impact of the pandemic on specialist teams working together Eva’s update on oncofertility and clinical trials and much, much more! Links COVID-19: What every patient with cancer or chronic illness needs to know Professor Eva Segelov (Monash University) Cancer and COVID-19 (Cancer Council Australia) Don't Forget To Sign Up for Your 7 Day Challenge to Take Your Life Back After Cancer!People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today: #btn_1_5095f450e13754607e74fd13894c14a2 .text {font-size:16px;color:#ffffff;font-weight:bold;}#btn_1_5095f450e13754607e74fd13894c14a2 {padding:5px 25px;border-color:#000000;border-width:1px;-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;background:#38b6ff;background:-webkit-gradient(linear, left top, left bottom, color-stop(0%, #38b6ff), color-stop(100%, #38b6ff));background:-webkit-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-moz-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-ms-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:-o-linear-gradient(top, #38b6ff 0%, #38b6ff 100%);background:linear-gradient(to bottom, #38b6ff 0%, #38b6ff 100%);filter:progid:DXImageTransform.Microsoft.gradient(startColorstr=#38b6ff, endColorstr=#38b6ff, GradientType=0);box-shadow:0px 1px 1px 0px rgba(0,0,0,0.5);}#btn_1_5095f450e13754607e74fd13894c14a2 .gradient {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .shine {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .active {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}#btn_1_5095f450e13754607e74fd13894c14a2 .hover {-moz-border-radius:6px;-webkit-border-radius:6px;border-radius:6px;}Sign Up Today I will never give out your email - view my Privacy Policy    

We know that life after cancer treatment is not always easy.  Maybe you don’t have as much energy as you’d like, or still dealing with side-effects, or maybe you’ve put on weight. And today, I’m talking to Lauren and Elise, they’re nutritionists who specialise in oncology and they share fantastic advice on getting your nutrition right after cancer. Here are some things that we cover today: How good nutrition can make a huge impact after cancer Why metabolic rate is a crucial factor when it comes to losing weight The truth behind organic food and how it affects you Real metrics to understand progress you’re making and much, much more! Links Oncore Nutrition Instagram: @OnCoreNutrition Facebook: https://www.facebook.com/OnCoreNutrition/ Email: [email protected] Linked in: https://www.linkedin.com/in/lauren-atkins-983268108/ https://www.linkedin.com/in/elise-den-129837149/ https://www.linkedin.com/company/oncore-nutrition/ Full Transcript Joe:                 Thank you so much for taking the time to talk with me today, I really appreciate it, I loved our conversation before on nutrition before and during cancer treatment.  Now, I’m really excited to get your insight into really eating well after treatment.  Tell me, first of all, what I want to understand is your perspective and maybe we can start with you, Elise, is why nutrition is so important after cancer treatment? Elise:                That’s a great question, Joe.  Nutrition, as we spoke about last time, is hugely important during treatment, but equally as important after treatment as well.  Often, some of the anti-cancer treatments of therapies or surgeries.  That could be chemo, radiotherapy, even immune therapy obviously damage the cancer cells and kill off the cancer cells, which is exactly what we want them to do.  What they also unfortunately do is damage some of our healthy cells, as well.  Good nutrition and eating well helps to repair and heal our healthy cells. It also helps to keep us stronger during treatment, the stronger we are during treatment, this improves our management of side-effects, after treatment, as well.  It provides our bodies with the energy that it needs to function efficiently and effectively.  By achieving and maintaining a healthy weight, this actually helps to reduce our risk of cancer recurrence in the future.  As well, maintaining a healthy weight helps to reduce our risk of other chronic diseases such as heart disease, diabetes, kidney disease, liver disease, etc.  I guess because of all of these factors, it really highlights how important nutrition is after treatment as well. Joe:                 Yes, that makes so much sense, Elise.  You know, Lauren, because most people, we don’t really think about cancer and nutrition in the same space.  Is there a science behind it? Lauren:            Yes, heaps of science behind it, Joe.  We wouldn’t be here if there wasn’t.  We only practice when there’s really solid evidence to support the advice that we’re giving.  What we’re really fortunate to have is a really strong community of wonderful researchers and scientists and health professionals out there, who are really dedicated to making sure that they look into the best nutrition advice in the cancer survivorship space, not just generally for people who have undergone cancer therapy, but specifically for different types of cancer as well. The nutrition advice for someone who’s gone through breast cancer treatment could very well be different to that of someone who’s gone through pancreatic or lung cancer treatment.  Huge amount of science to support the advice that we give.  One really useful organisation is the World Cancer Research Fund, who have a wonderful report that summarises the evidence that’s available to us to provide recommendations to eating and drinking after cancer treatment. Joe:                 I think it’s so fantastic that it’s targeted toward people who have gone through a specific cancer treatment or a specific cancer, because that means that your advice is really specific to you.  I know that when you are helping me and there were specific recommendations for things to keep in mind for testicular cancer, which is incredibly helpful, because that means you can look at things that are specific to you and your health and where you’re at right now.  Tell me, Elise, again, I want to zoom out and talk about the biggest obstacles that we really have in creating a healthier life after cancer, what are some of the things that really get in the way for us? Elise:                Yes, and, Joe, you would know first-hand that going through cancer treatment changes your life profoundly.  We have lots of clients and patients tell us that their life is actually never the same after cancer treatment, which I’m sure you can vouch for.  One of the biggest obstacles I find, which is challenging for patients to overcome is the ongoing side-effects after treatment.  It’s very well-established that there are a whole host of side-effects as a result of anti-cancer therapy.  That could include nausea and vomiting, fatigue, ulceration of the mouth or the oesophagus.  Issues with your bowels, so constipation or diarrhoea. A lot of these side-effects are not only present during treatment but after treatment, as well.  It’s really difficult for patients to actually get back into normal life, to get back into work and relationships with their loved ones and families after they’ve been through this sort of treatment and after they’ve experienced all of these side-effects.  Often, a lot of these side-effects result in patients not being able to eat well or enough, which can lead to weight loss, but also what’s important for us to note is that it can lead to muscle wasting. Now, what we know is that after treatment, patients who have actually lost their lean body mass and their muscles actually have a slower metabolic rate.  Now, this slower metabolic rate can often result in compensatory weight-gain after treatment, so this, again, makes it a really challenging obstacle because patients are often being told during treatment to eat high energy, high protein foods, which are often good, but sometimes they are encouraged to eat foods that are more energy dense. Not necessarily as nutrient rich to help maintain their weight during treatment.  When they continue with these behaviours after treatment, they end up gaining weight, which can be a really challenging obstacle to overcome.  When you’ve just gone through a really difficult time going through chemo radiotherapy, and then trying to transition back into normal life. Joe:                 Yes, I can completely agree with you, that it changes your life completely.  Maybe, Lauren, you can talk to me about what is a metabolic rate and what is a good metabolic rate? Lauren:            Metabolic rate really is a measurement of how your body processes fuel.  If you’re someone who, for example, has a high metabolic rate, it means you’ve got a fast metabolism, which means that you might break down and burn through fuel more quickly than somebody else.  If you’ve got a slower metabolic rate, you might burn through fuel more slowly and you’re more predisposed to putting on weight.  Storing fuel as fat.  What we know and what Elise is talking about before is that if you lose muscle mass, you end up with a slower metabolism, and a slower metabolism means that you’re more likely to gain weight as fat. That can be detrimental to our long-term health, as Elise mentioned, but also, we know that if you’ve finished your cancer treatment and your energy levels are low and you haven’t been exercising or moving or working as much as usual, your whole body system isn’t working as it used to.  Simply reverting back to what you used to eat might not necessarily be the best way forward for you.  You’re now in a new body to some extent.  It’s been through a lot; a lot of trauma and it’s got different needs to what it did when you first started your cancer treatment. Joe:                 Yes, I love that you talk about the fact that we can change it and influence it.  I think when it comes to nutrition and your metabolism, I always thought that it was just, my mistake, but I always just thought that it’s something that you are basically born with and you have to live with.  You can’t really influence it in any way.  It sounds like what you’re talking about is, we can actually influence it and change it so that it works for you and not against you. Lauren:            Absolutely, and we can do in many ways.  We can do that by altering body composition.  For example, putting on muscle mass and losing body fat will change your metabolic rate.  Certainly, there are different ways foods are processed in our body.  If we choose foods that are broken down and absorbed really quickly, versus foods that are really slow release energy, that changes the way your body functions, as well.  It changes the hormones that are released, the inflammatory markers that circulate, and there are lots of links between the fuel that you eat and how your body will function from an energy point of view and from a health point of view. Joe:                 What are the best things that you can recommend, in terms of the things that you can keep in mind, in terms of importance?  When it comes to eating well after cancer treatment.  Slow release? Lauren:            Joe, look, the best foods to eat and what Lauren and I always recommend are whole foods.  Foods that are not packaged or processed.  Usually, these sorts of foods are fruits, vegetables, wholegrain breads and cereals, nuts and seeds.  Quality protein.  Poultry, chicken, turkey, lean meats, fish and sea food.  Also, legumes, so things like lentils, chick-peas, kidney beans.  Really, anything that comes in a natural state is a really valuable addition to your diet.  It’s about finding balance in how to separate which portions of each thing is right for you and your body. That’s going to be different and unique for every individual, but one thing that’s really key in terms of promoting a strong and healthy metabolism is ensuring that your meeting your body’s protein needs.  We do find a lot in cancer survivorship.  After cancer treatment, there is a shift in the way that people eat to be really convenient and easy foods, that tend to be rich in carbohydrates and quite quickly absorbed by the body.  As dieticians who work in cancer care, we know that the advice that we give someone during cancer treatment is quite different to the advice that we give someone after cancer treatment.  It’s really key to speak to a professional in the field to transition your diet form your during treatment advice, to your after-treatment advice, so you don’t hang on to some of those habits that are no longer suitable for you. Joe:                 What about organic foods?  Is that something that you guys recommend focussing on? Lauren:            Not necessarily, Joe.  There’s lots of research done into organic foods and whether or not they’re more health-promoting than others.  What the research generally shows at the end of the day is that individuals who eat an organic diet, in some studies, have shown that they’ve got fewer health conditions in long-term studies.  What we also know about people who eat organic food is that they tend to be of a higher income level.  They tend to be better educated, have good jobs, they can afford good healthcare. Making a direct link between eating organic and being healthier isn’t possible, because there are too many other factors associated with eating an organic diet.  In terms of recommending organic food, we absolutely wouldn’t, eating any fresh produce is very beneficial, if you can afford organic food and it’s your preference and it makes you feel good.  We are 100 percent supportive of that because we know that there may be some benefits, but it’s not essential in order to be healthy. Elise:                One thing that we often get a lot of clients ask us, Joe, is the nutrition composition of the organic food superior?  Again, what the research tells us is that actually it’s not that different to normal fresh-produce.  One thing we always recommend is, if you do want to eat normal fresh produce, it’s just to make sure that you give it a really good wash before you eat it, to make sure that it gets rid of any herbicides or pesticides. Joe:                 I think that’s great advice because it really also, you just shine the spotlight on the fact that it’s affordable and doable and that it’s all realistic.  I think there’s a lot of stigma around eating well, that it has to be expensive and that it has to change your lifestyle.  Whereas, I think what you guys are saying is that it’s really something that you can do quite naturally. Lauren:            For sure. Elise:                One other thing with organic produce, too, Joe, is that during cancer treatment, so if you’re undergoing cancer therapy and your immune system is compromise, so with some chemotherapy, for example, there is a theory that organic produce is a less safe option for you.  If we think about the normal processing of other produce that uses chemicals to help rid that food of any bacteria or germs, that’s really important for someone with a poor immune system, because that bacteria that might be present on perhaps more likely on organic produce, could be a risk for infection for that individual.  There is an argument that organic food during cancer treatment is not a good idea and we should be having the foods with the chemical processing having been done to it. Joe:                 Wow, I did not see that coming.  Cool, I think that’s really important to know.  I think I want to jump in with the body composition thing.  I think we’re talking about changing the body composition.  The first time I heard that phrase, I think my oncologist said that your body composition has changed after treatment.  I was like, what does that actually mean?  I think I realised that it was a polite way of him telling me that I got fat. It’s important to know where you’re at, which I think leads me to really my next question.  I think one of the things that is incredibly important when we’re talking about changing the way you eat, changing your lifestyle, maybe doing some exercise or movement, well, what are the metrics that you can keep in mind so that you can focus on getting the right results for your body, for you and your life? Elise:                We can probably even use you as an example for this, if you feel comfortable? Joe:                 Yes, by all means. Elise:                If all we did in your care was measure your weight, we would have seen no change.  Would you agree with that? Joe:                 Absolutely. Elise:                Your weight hasn’t changed.  What we’ve known through other measurements that we’ve taken, looking at your fat mass and your fat stores, is that your bodyweight hasn’t changed, that your fat mass has significantly decreased, and your muscle mass has increased. Joe:                 Yay. Elise:                Which is a huge achievement, and certainly an important think to report back to your oncologist to say, “Yes, my body composition has changed, this time perhaps in the right direction.” Certainly, it’s very important that we look at different metrics of body composition.  We can do that certainly through weight, but there are lots of limitations to that measure.  There are some really clever machines that we can use that will help to measure body composition in terms of fat and muscle mass, your water percentage, the weight of your skeletal mass, so your bones.  These are often available in a clinical setting.  You might have heard of Dexa-scans, or BIA scales.  They’re sometimes available and really useful to have a more accurate measure of what’s happening in your actual body. Joe:                 Is this something that you would recommend as part of the practice of someone who is working with you, you establish a baseline and then you would work towards some sort of a target, right?  Towards where you want to be? Lauren:            Absolutely.  The challenging thing is, Joe, that often scales like the BIA scales of the Dexa machines, they’re very expensive and they’re not often accessible.  Therefore, using different metric system like your waist circumference, there’s another measure called mid-upper-arm muscle circumference as well.  There are different options and other metric systems that we can use when specific body composition analysis machines are not present. Another screening tool we use is something called the PGSGA, which is a patient generated subjective global assessment.  That’s a screening tool that assesses a patient’s nutritional status and that’s, again, a specific tool that’s validated in the oncology population.  A tool that I’d say we pretty much use for every patient. Elise:                Part of that tool, Joe, is that we look at different muscle stores and fat stores across the body.  When I poke and prod you, I’m doing it for good reason.  That’s to identify any change in your muscle mass and fat mass compared to previous consults. Joe:                 Yes, I’m glad to know that there was actually a reason to the madness.  That’s good.  Well, I think it’s incredibly, like, all of those metrics, guys, that you touched on, I think are incredibly important from the perspective of being motivated.  I know that when it comes to getting results.  I think it’s no secret that when you go to work with a nutritionist, such as yourselves, who specialise in oncology, you’re going to have to make some changes.  I think that’s true for any area of life.  If you want to get results, then you really want to be prepared and you want to be focused on the results that you want. I think that is one of the things that was really important for me and this was important when I caught up with you today, Lauren, is to know that we measured where I was at and to know that I was making progress.  I think for all of us, when it comes to whether that’s losing weight or having more energy or decreasing other side-effect, whatever that might be for you, you really want to know that you are making steps forward, that you are making consistent progress that is right for you and your life, because that’s what keeps you motivated.  Otherwise, it’s very hard to stay on track, right? Elise:                Absolutely, for sure.  What we spoke a lot about today was not just the measurements in terms of your body composition, but really how you’re feeling and what you’ve noticed in the change of your energy levels, your function and how you feel in your own skin.  The ability to be able to track that and report that back to somebody and make sense of it and relate it to the food that you’re eating and how you’re fuelling your body is so motivating.  What’s not so motivating is a simple number on a scale, it’s just a number.  For a lot of people, it means a lot, but I think what perhaps means more is how you actually feel and how your body is functioning. Joe:                 Yes, absolutely.  Elise, what about when we’re talking about healthy weight or healthy body composition?  What are some of the things that we should keep in mind when we’re thinking about that?  What is healthy? Elise:                Look, Joe, healthy is different for everyone.  One measure that we often use, again, it’s not gospel and certainly not the best measure, is the body mass index.  That is based on a healthy weight range.  The equation is your weight divided by your height in meters squared.  Then it gives you a specific number that fits you into different categories, be that underweight, normal weight, overweight, or obese.  Again, while we know that your weight on the scales is not always going to be the best indicator for your progress, it is a good general measure to know if you are within the healthy weight range.  Where this gets a little complex is for patient who do have a large volume of muscle mass. We know that muscle weighs more than fat, therefore, for a male that has a really strong physique, that has a lot of muscle, they actually might fall into the overweight or obese weight range, but for us as dieticians, by eye-balling them, we can actually tell that they don’t fall into that weight range.   I guess that is a good general measure of your body composition for the general population. Lauren:            You’ll know, Joe, that similarly with your weight, your weight didn’t change, so your BMI wouldn’t have changed.  It doesn’t give you the whole picture.  When it comes to looking at body composition, it’s important for a qualified health professional to look at certainly different stores, whether it’s your muscle and fat stores and your fluid status.  I think more importantly doing a really thorough assessment of your nutritional intake and identifying what links there are to what you’re eating and how that’s fuelling your body. Regardless of someone within a normal or even an underweight category, they might be eating all of their nutritional needs, but are of nutrient poor foods.  They might be meeting their caloric needs or energy needs just with ice creams all day.  They could be weight stable and their BMI could be healthy, but that’s not a reflection of health. Elise:                I do think it’s a good starting point for someone who might be starting out, who wants just a baseline measure, they maybe don’t have access to the IA scales or a Dexa scan.  They want to know what their starting point is, it might be at the beginning of their health journey.  BMI is a really simple and easy equation to measure to have as a baseline.  As Lauren mentioned, obviously, making sure that you’re taking into account the foods that they’re eating but also their visual muscle status and body composition, as well. Joe:                 Yes, absolutely, and as someone who’s going through active treatment, I know that this whole fear of cancer coming back is a pretty big deal because before every check-up, you’re thinking, well, is it going to come back.  You get all of these worry thoughts into your head.  What about when it comes to nutrition after cancer, and I know we touched on that earlier, but could you talk more about how can nutrition help to minimize the chances of cancer recurrence, minimize the chances of it coming back? Elise:                There’s strong evidence to support that our nutrition certainly does play a role in the risk of cancer recurrence.  The biggest evidence exists for our bodyweight, and an individual cancer survivor who might be holding extra weight and be overweight or be in the obese category, has a high risk of recurrence than someone who is at a normal weight.  One of the biggest things that a cancer survivor or someone who’s finished treatment for cancer can focus on for their long-term health is making sure that they reduce their weight to be really in a healthy weight range.  That’s where it’s so key to have support to be able to take those measurements and review your diet to make sure you’re preserving your health as best you can. Joe:                 Is it about body weight or is it about a specific, say, body fat?  Fat in a particular area of the body? Elise:                Unfortunately, the research hasn’t been able to pinpoint what that is, all the research shows, and there’s strong research, but it’s not specific research, is that weight classification that’s key.  While we have predictions and hypotheses that it is the fat stores that are contributing to longer term cancer recurrence risk, the research isn’t yet strong enough to support that claim. Lauren:            I think, Joe, with heart disease, diabetes, certainly that central adiposity, there’s a significantly increased risk of those chronic conditions.  As Lauren said, as far as cancer goes, I think there’s a lot more research in that space that needs to happen before we can make those solid claims. Joe:                 I know, this is the case for me, and I think it’s the case for many other folks, as well, that after going through cancer treatment, particularly if it’s chemotherapy or radiation, sometimes it can really dramatically increase chances of heart disease.  Definitely that’s why having a healthy weight can also make a big difference.  That’s one of the reasons why I am concerned.  I think one of the things about cancer, at least in my experience and in my journey is, I couldn’t really do anything about getting cancer in the first place.   Now, having gone through the experience and now, luckily, I’m cancer-free now, but I’m thinking, if I can do anything to minimize the chances of it coming back or getting some other cancer or getting some other nasty conditions such as heart problems and stuff, that I’m at a higher risk of, then I really want to be in control of that.  I really want to do my best to try and influence that.  I think when it comes to exercise and when it comes to nutrition, and to getting some proper advice on this front can make a huge difference because it puts you back into control of your life, right? Elise:                Joe, that’s one of the amazing things about nutrition.  You said it beautifully.  You had no choice, you didn’t choose to get cancer, but you can choose the way you’re going to live your life in the future.  You can actually control the food that you’re eating to minimize your risk of cancer recurrence, which I think is amazing that nutrition can be that powerful, that it can have such a profound impact on our health. Lauren:            Yes, the other thing that’s really exciting for us as dieticians, Joe, is that there’s certainly lots of advice depending on the cancer diagnosis that you’ve had, as to different types of foods and nutrients that are most beneficial for you to reduce, not just your risk of cancer recurrence, but reduce the risk of your cancer recurring.  The advice that we might give someone who’s finished their treatment for breast cancer, could be quite focused on looking at their alcohol intake and their intake of antioxidant-rich foods.  If we compare that to somebody who might have had treatment to their throat cancer, we know that there’s strong evidence that increasing their intake of particular vegetables is particularly key.  Depending on the different cancer types, there’s different nutrients and different foods that play a really key role. Elise:                Lauren and I had a great time when starting our business, doing comprehensive literature reviews of all of the different tumour strands and also, nutrition interventions and building some really robust resources to give to our patients, so that they had specific information and interventions that they could implement to reduce their risk of recurrence of their specific cancer in the future. Joe:                 Yes, that’s fantastic that you guys are doing this work that is very targeted towards folks in this specific situation they are in.  I was wondering if you could share top three strategies that someone could incorporate into their daily life.  Having gone through cancer treatment. Elise:                Absolutely, so first and foremost is, eat more plants.  Load up your plates with heaps of non-starchy vegetables, so things like spinach, tomatoes, mushrooms, I could go on forever.  There are heaps and heaps of non-starchy vegetables.  They’re not only really rich in fibre but really rich in powerful antioxidants that actually help to protect ourselves, which are really important in the context of reducing your risk of cancer recurrence in the future.  They are also quite low in kilojoules and also fill you up.  If you have a diet that’s rich in plants and vegetables, you’re much more likely to be of a healthy weight. Fruit, as well, so aiming for two pieces of fruit per day, again, that’s to ensure that you’re getting the valuable micronutrients, vitamins, minerals, antioxidants, and fibre, as well.  Another food group that we love is the legumes, lentils, and pulses, as, again, they’re really rich in fibre.  They also contain a particular starch called resistance starch that actually helps to nourish out gut microbiome. It acts as a food source for the good bacteria that live in our gut, which we know has a really positive impact on our immune system, but also keeping our gut nice and healthy and reducing our risk of bowel cancer.  We always recommend eating the rainbow, so the more vibrant colours of the fruits and vegetables, the better. Lauren:            That’s number one. Elise:                That was a long one, sorry, guys. Joe:                 Perfect. Elise:                That was a very colourful one, I loved it.  I’m going to go a bit more of what not to do.  Number two I would say to be to try and limit your intake of processed foods.  In particular, processed meats.  If we think about processed meats, we think about ham and salami, bacon, hot dogs.  What we know is that having an intake of processed meats of any amount, but particularly of a high amount, can increase our risk of colorectal cancer and damage to our colon cells. We would encourage you to minimize your intake of processed foods, processed meats, but also takeaway foods and packaged biscuits and cakes that are often prepared with particular types of fats called trans fats, which can increase the levels of inflammation in our body and can increase our risk of health problems.  Number one, eat the rainbow and include those beautiful legumes, but number two is trying to minimize your intake of processed foods.  What’s number three? Lauren:            Number three, I think we’ve spoken about this quite robustly throughout this podcast, but it’s achieving and maintaining a healthy weight through proper nutrition but also complimented with exercise, as well.  Joe, you’re a perfect example of what a good approach of a really good exercise program and fabulous dietician, how that can really help to improve your symptoms and make you feel better and ultimately improve your health outcomes. Joe:                 Yes, that’s fantastic, guys, I love this advice.  Talk to me about alcohol because I think it’s something, again, that you touched on, that might even affect cancer recurrence for some cancers.  What’s your advice on this front? Lauren:            Yes, there certainly is evidence that alcohol consumption at higher levels can increase the risk of certain types of cancers, in particular, we know that if somebody has undergone treatment for breast cancer, there are particular recommendations to reduce alcohol intake to below that of what the general population would be recommended.  Alcohol, unfortunately, can cause damage in our body, which can predispose us to health concerns of all types, cancer being of them.  The recommendations for alcohol intake for a cancer survivor would be to aim to have no more than two standard drinks per night and to have two alcohol-free days per week. Elise:                We actually try to add on an additional goal for our patients, I usually say aim for three to four alcohol-free days a week.  just to improve your health, but also reduce your risk of chronic diseases. Lauren:            Yes, the other thing that’s important to know is that certainly in the case of breast cancer, those recommendations are lower.  It’s actually recommended to have less than one standard drink per day in breast cancer.  About half a drink is the maximum recommended intake after breast cancer.  We know that people live a life and balance is really important.  While these recommendations are certainly worth striving towards, it’s not going to be achievable in every case all the time.  That’s something that’s important to understand in the context of your whole world and your whole life.  Any progression towards that recommendation is going to benefit your health. Joe:                 Yes, I’m really glad that we keep coming back to this theme of finding the right balance.  I think it’s no use and I know we’ve talked about this before.  It’s not use of just doing something where you’re forcing yourself to do it because it’s not sustainable, it’s not going to stick and ultimately, you’re just going to feel like you’re torturing yourself.  Whereas, I think if you’re setting yourself some goals that are specific to you and your life, and I think it is important, of course, to have someone like yourselves to guide the person through it, I think it’s really important for you to find a sustainable way of living a healthier lifestyle that isn’t some pretty picture or isn’t some imaginary thing.  It’s very real and tangible for you and where you are. Elise:                Look, Joe, we don’t expect someone to go from drinking a bottle of wine every night with dinner, to go to not drinking at all.  As you mentioned, it needs to be short and small attainable goals towards the recommendation.  We don’t want you to go cold turkey.  We want you to enjoy your life, but obviously working towards those recommendations. Lauren:            One thing, Joe, you alluded to multiple times in our conversation is that it’s so important that those goals are not our goals, not the dietician or the doctor or the exercise physiologist goals, that it’s your goal as the individual that’s going through this.  You’re only going to change your behaviour if you’re motivated to do so.  If you come into our office and say, “This is what I eat, this is what I drink.  Don’t touch what I drink because I’m not going to go there, but you can improve my health through what I eat.” Great, then we’ll work in that space.  Otherwise, there’s no point us providing advice that doesn’t fit into your world. Joe:                 Yes, absolutely, I love that because I totally agree with you.  I think there’s a huge difference between what you need to do and what you want to do.  I think we all know that we need to do so many things, but it really comes down to what you want.  If you want something, then you’re really going to put the effort into it.  You’re really going to strive to achieve that.  We all know that we need to do this, we need to do that.  It’s important to focus and do the things that are right for you.  Sometimes it’s all about reaching out and finding I think someone like you guys to help to facilitate that process.  I guess if someone wanted to work with you individually, whether that’s face-to-face or online, so how would they find you? Elise:                Yes, no worries, Joe, we’d be very happy to hear from anyone.  People can reach out to us certainly via our website, which is: www.oncorenutrition.com.  Spelt: O-N-C-O-R-E… nutrition.  The email address, our phone number, that’s all available on our website there.  Certainly, we’ve got two soon-to-be three locations in Melbourne that we practice out of, but we also offer phone consultations through our tele health service all across the world.  It doesn’t matter where you are, what time zone you’re in, we’ll find a way to be able to support you if that’s something you’re interested in. Joe:                 Fantastic, thanks so much, guys.  Thank you for your energy and your time today.  I really appreciate it. Elise:                It’s always a pleasure, Joe. Lauren: Thank you for having us.  

Lauren and Elise are nutritionists who specialise in oncology.  They share practical actionable advice on nutrition that you can apply right now and in a way where you’re not denying yourself anything, so you are not going to feel miserable, which is so crucial. Here are some things that we cover today: Why diets never work Whether sugar feeds cancer How taking supplements during treatment can harm you Best sources of protein for your body and much, much more! Links Oncore Nutrition Instagram: @OnCoreNutrition Facebook: https://www.facebook.com/OnCoreNutrition/ Email: [email protected] Linked in: https://www.linkedin.com/in/lauren-atkins-983268108/ https://www.linkedin.com/in/elise-den-129837149/ https://www.linkedin.com/company/oncore-nutrition/ Full Transcript Joe:                 Hello, guys, thank you so much for doing this.  I really appreciate your time.  By the way, I love what you’re doing, I think nutrition is such a hugely important and underrated thing during cancer.  I really want to understand the link between cancer and nutrition.  I want to start with your personal stories.  Like, how did you get into it and how did that connection between nutrition and cancer, how did that come about?  Let’s start with you, Elise, first. Elise:                Sure.  Look, for me, Joe, I was somebody who was always very passionate about health and fitness.  Growing up, I was involved in a lot of sport, from athletics to basketball, swimming, tennis.  From a young age, fitness and nutrition was something I knew that I wanted to pursue long-term.  I initially decided to do dietetics because I thought that I wanted to work with athletes with sports nutrition.  As time went on, I started to develop a real appreciation for the importance of nutrition and the impact that it can have, particularly in the context of cancer. For patients not just during their cancer treatment, but also into survivorship as well, so reducing their risk of future recurrence.  What I also found was that these sorts of patients, we can have a huge impact on their life.  I gained a lot of fulfillment and a lot of self-worth through helping these people through one of the most challenging journeys of their entire life.  It was from them that I realised, nutritional ecology was something that I wanted to specialise in, but also to dedicate my working career to. Joe:                 Yes, that’s fantastic.  I also feel like you guys are also privileged to also be working with real athletes.  That’s for sure, thank you, on my behalf.  Lauren, what about you? Lauren:            Well, I had a similar experience to Elise, in that I always had a real passion for nutrition and health overall.  My interesting nutrition and dietetics came more about through the science background.  I really enjoyed chemistry and biology and health sciences at school, but I also really enjoy psychology.  What I found through studies was that the use of nutrition as a therapy is not just a biological and a chemical therapy, it’s very much a psychological and a social therapy, as well.  Yes, food is nutrients, food is chemistry, but it’s also our social life, our environment, our psychology and emotions.  Being able to marry those things together in a career to help support people was a no-brainer.  Yes. Joe:                 That makes so much sense, because that really puts that whole perspective of treating the whole of a person and putting it in that larger context. Lauren:            Absolutely.  I think Elise and I get a lot of our job satisfaction and fulfilment and enjoyment not so much from the science of the chemistry and nutrition therapy that we’re offering, but through empowering people with knowledge and education to make their own health choices and improve their own health. Joe:                 Tell me, Lauren, what is nutrition important during cancer treatment? Lauren:            A massive question, but it is so incredibly vital during cancer treatment.  If we look at any type of cancer therapy, be it chemotherapy, radio therapy, any biological or immune-based therapies and surgery, there’s such strong evidence that nutrition prior, during, and after any of those treatments can significantly improve treatment outcomes and treatment tolerance.  There’s a really strong link between someone being well-nourished before and during their treatment, and their long-term survival outcomes. Joe:                 Yes, that’s fantastic.  Elise, tell me this, if someone is about to start treatment, maybe they’re about to start chemotherapy or radiation, or maybe they’re going to have some sort of surgery, is there any type of nutritional advice that you can give before they actually get started, because typically there’s a window there? Elise:                Yes, absolutely.  What’s important to note here, Joe, is that every individual is very different.  As well as every individual being different, every patient’s cancer treatment, diagnosis, also has a huge impact on their nutritional status, but also the recommendations that we’d be providing.  I guess in general, recommendations for someone who would be starting treatment or would be going through surgery is making sure that their muscle mass and their lean body mass is thriving. The reason for that is, we know that the stronger someone is, the better their outcomes are going to be during treatment, but also post-treatment, as well.  Certainly, we do recommend for a lot of these patients going on some sort of high-protein diet in the leadup to their chemo or radio therapy, also, surgery, as well, just to ensure that we’re keeping their bodies really nice and strong, so that they can tolerate and cope with the treatment well. Joe:                 Great.  Is that what’s called pre-hab? Elise:                Yes, absolutely. Lauren:            Absolutely. Elise:                What’s really interesting, Joe, is that the presence of cancerous cells in the body can significantly increase our body’s nutritional needs, the metabolic demand.  Simply by having a diagnosis, somebody’s nutritional requirements can increase by 150 percent.  They need to eat for one and a half people before they’ve even started any type of treatment.  That can be a real challenge, when first if that information is not delivered to the person who’s in that situation, but secondly, if they’ve got any type of side-effects that hinder their ability to eat and drink. Lauren:            What we do know is that a lot of patients actually present to us with side-effects before they’ve even started treatment.  For a patient with tongue cancer, they might have pain when they swallow, or they may have issues chewing.  They’ve haven’t even started treatment yet, so you can imagine how difficult meeting their nutritional requirements are when they’re already presenting with symptoms before we’ve even thrown chemotherapy or radiotherapy in the mix. Joe:                 Wow, that’s a real eye-opener.  I never really thought about it that way.  I know that you guys are so big on providing information that is evidence-based.  Can you talk about what that is and why that’s important?  Maybe we’ll start with you, Lauren, first? Lauren:            Yes, certainly.  I think a huge pillar to our care as dietitians is that the advice that we provide to any individual is not only tailored to them, their own personal and treatment plans, their own goals, but certainly it needs to be information and knowledge that’s been well-researched and proven to be effective.  What we know is that there is such a wealth of information available to every man and his dog out there.  It’s very easy to come across information that may not be suitable for each individual.  Elise and I, as dieticians, are very passionate about providing information that’s well-researched and backed up strongly by the highest quality evidence. Joe:                 Yes, exactly, because I know how frustrating it is to see things that you know are not true.  I remember just going through chemotherapy and I remember being in a bookshop and I remember looking at all of these books that are saying: Stop cancer by eating… I was like, no, that’s not even true. Lauren:            Joe, it’s so frustrating and so challenging for us knowing that there is so much misinformation out there, which is part of the reason why Elise and I decided to start our own business and try to enter more into the world of the broader public, so that we can be a bit of a voice of reason and provide that information that’s scientifically sound and reliable. Elise:                Yes, I think where a lot of people out there go wrong is, everybody tries to instil fear in someone, “You can’t eat that, or you’ll die.” “If you drink this, you’ll get cancer”.  Everyone wants to make a huge impact because at the end of the day, that big impact, that scare tactic, that’s what sells books, that’s what gets hits on blogs, that’s what gets the likes on social media. Unfortunately, ethically, there are a lot of people out there who are putting that sort of information out into the media and into the public and vulnerable people, people who have cancer, are getting hold of that sort of information.  That can be really detrimental.  Not just physically, but also emotionally, as well.  Something that we see a lot of in practice is, people are scared to eat certain foods.  There’s a lot of fear and anxiety around eating.  That’s particularly around a lot of that misinformation that’s out there in the media. Joe:                 Cool, so let’s dig right into that.  Tell me about some of the biggest myths and misconceptions that really exist around nutrition during cancer? Lauren:            Yes, I think probably the biggest one that we hear is the concern that sugar feeds cancer.  Joe, I don’t know if that’s something that you ever heard? Joe:                 Yes, I have. Lauren:            Yes.  Look, this is an area that we get a lot of questions about, the short answer is, yes.  Sugar does feed cancer.  That’s also a very irresponsibly short answer.  The long answer is, yes, sugar feeds cancer, but so does every other nutrient that we eat.  If you take away sugar, cancer is then fuelled by protein and by fats.  It’s irrelevant whether or not sugar is in the mix.  Cancer, unfortunately, it finds a way to grow. Elise:                Yes, cancer cells are really greedy.  Their primary source of energy that they prefer to take will always be carbohydrates.  Obviously, carbohydrates are broken down into sugars.  As Lauren said, once all of those sugar stores have run out, it will then start to metabolize fat and protein.  Starving your cancer cells or your cells from carbohydrates or sugar is not always the best answer because it will also be metabolizing your muscle and fat stores, which obviously you need to protect you during the treatment, as well.  A lot of what we find is, a lot of people that try to cut out carbs or reduce any sort of carbohydrate intake, it can actually be detrimental to their long-term out comes. Joe:                 That’s really important to know.  Is there anything else that comes to mind in terms of things that people get wrong? Elise:                Yes, so another common misconception is the alkaline diet.  Have you heard of that, Joe, as well? Joe:                 I’ve heard the name, tell me more. Elise:                Yes, look, the theory behind the alkaline diet is that cancer cells can’t exist in an alkaline environment.  Similarly, to sugar feeds cancer theory, the short answer to that is yes, they can’t survive in an alkaline environment. Lauren:            Some of them can, some find a way.  It’s also not necessarily true. Elise:                Where a lot of that research is, is in a lab or in test tubes.  If we put cancer cells in an alkaline environment in a test tube, they don’t thrive as well.  However, in the human body, that’s very much different to a test tube.  Now, our body maintains a very right balance of our PH, so our acid and base balance.  No matter what we eat or drink, that actually doesn’t have any impact on our acid and base balance, or the alkalinity or the acidity of our body. Lauren:            Of our bloodstream or our tissue.  What we know is that the food that you eat, if it’s an alkaline or an acidic-based food, it will change the PH of our waste.  Yes, it will change the PH of our urine and of our faecal matter, but what’s really important is that it doesn’t change the PH of our blood system or of our body tissues and organs.  That is so important.  Joe, if what we ate changed the PH of our blood, we would all be so unsafe.  We’d all be hooked up to massive machines in ICUs everywhere. Elise:                Filtering out all of our blood. Lauren:            One really frustrating thing when it comes to diets that are proposed to cure or manage cancer, is that they’re often really restrictive and they often irradiate or recommend people avoid really important food groups.  The alkaline diet in particular, for example, is wonderfully full of plant-based foods, and lots of vegetables, which is great.  It disallows fish, it doesn’t allow some nuts and seeds, and grains, which are really valuable for our body’s function overall.  Any diet that’s proposed to cure or treat or manage cancer certainly raises alarm bells, because we know without question from huge bodies of research that unfortunately, there’s no particular food or eating pattern or diet that has been shown to prevent or cure cancer. Elise:                We wish there was. Joe:                 What are you tell me, you guys?  There’s no magic wand? Elise:                No. Lauren:            If there was, it would be part of our conventional therapy.  It’s really challenging when we’re then presented with people who have been restricting their diet and spending lots of money or putting lots of energy into changing the way they eat, that doesn’t have any impact on their cancer outcomes, but more importantly, it’s financially and socially really stressful. Joe:                 Yes, exactly because it puts so much pressure on you, pressure that you don’t need when you’re dealing with treatment, because you could be using this willpower to deal with other things, to deal with your treatment or with other things in your life.  It’s really good to know that there is no one-sided solution, like a diet to just really keep you through it, what about supplements or vitamins?  I know that’s also some of the possible misconceptions out there, that possibly we should be eating vitamin C or whatever.  What are your thoughts on this? Elise:                Yes, that is an interesting question, Joe, because supplements and vitamins are now a very big part of our culture.  Most people that you know will be on some sort of supplements.  I guess where this school of thought is, is that the more supplements that you take, or the more nutrients that you’re putting into your body, the better, and the more nurturing you’re being to your body.  Now, this theory isn’t always correct.  What we do know with supplements is that if they are, particular supplements are taken during treatment, so particularly radiotherapy. If antioxidant supplements are taken during that time, that can actually interfere and down-regulate the effectiveness of the radiotherapy.  What antioxidant supplements do, now, whilst they’re very healthy and good for a normal person, when you’re undergoing radiotherapy, what the antioxidants do is, they don’t only protect your healthy cells, but they protect cancer cells, which we don’t want.  We actually want the cancer cells to be sensitive to the radiation.  A lot of people don’t know that. A lot of people are unaware of the impact that these sorts of supplements can be having on their treatment, which is why we always recommend to all of our clients to make sure that if they are taking any sort of nutritional supplements, that they’re discussing that with us and their oncologist, as well. Joe:                 Cool, so that’s really important to know.  When it comes to just eating well during treatment, what are some of the most important things to keep in mind, I guess some of the rules of thumb, so to speak.  I know, because every situation is different, but what are some of the important things to keep in mind and to focus on in terms of specific foods or eating patterns when you’re dealing with cancer treatment? Elise:                Yes, look, as we said, there’s a lot of to be said about getting a tailored individualised plan, because every diagnosis and also every treatment will come with their own special requirements when it comes to nutrition.  As a general rule of thumb, it’s very important to try and eat a balanced wholefood-based diet.  What you were talking before about nutritional supplements and different vitamins and minerals, we know that they can often cause more harm than good.  Also, they shouldn’t be required if we’re following a really balanced diet. There’s a lot to be said for meeting your nutritional needs through real food.  Wholefoods as a priority.  For me, it’s really important to ensure that your body is getting enough protein.  That’s related to the additional requirement that our body has when we’re going through different types of cancer treatment.  Again, the need for protein is often at about 150 percent of what it normally would be.  Not eating for one but eating for one and a half people.  That’s really key to help preserve not just your weight during treatment, but more importantly, your muscle mass during treatment. We know maintaining your muscle mass preserves your strength, your immune function, your ability to recover after every cycle or every treatment after your surgery.  We know, long-term, it’s really important for your outcomes, survival outcomes.  Also, for your long-term health and making sure you still have a really strong metabolism that’s not going to see you put on weight later on down the track. Joe:                 That’s huge.  What are some of the best foods when it comes to protein? Lauren:            Yes, so some really valuable sources of protein most often come from animal sources, so meat, chicken, fish, eggs, and anything dairy-based are really powerful sources of protein.  In particular because they all tend to have what we call a complete amino acid profile.  They have all of the essential amino acids that we need each day in those foods.  There’s also some amazing plant-based sources of protein. Things like tofu and Tempe, some grains like quinoa, seeds, nuts, chia seeds in particular.  One of the very few plant-based sources of protein that’s got a complete amino acid profile.  It’s really valuable particularly if you follow a vegetarian-based diet during cancer treatment, to chat to a dietician and make sure that you’re getting the right amount and balance of protein across the day. Joe:                 Yes, absolutely.  What about the situation when you’re going through treatment and it’s changing your taste buds?  It’s affecting the way you eat.  What sort of advice do you have on managing that, Elise? Elise:                Yes, so taste changes are a really common side-effect generally from chemotherapy.  It can also occur from radiotherapy, as well, particularly if you’re having that delivered to the head and neck area.  Ways to manage taste changes, we usually recommend the addition of extra herbs and spices to help enhance the flavour.  Adding extra sauces, as well, can be a really powerful tool to help mask taste and add a little bit of additional texture and flavour, as well.  For some patients who experience a metallic taste in their mouth, usually we recommend using a cardboard plate or plastic utensils rather than the stainless steel, which can often be of assistance as well.  I don’t know, Lauren, is there anything else? Lauren:            One thing that can really help is keeping your mouth really fresh and clean just before a meal.  We often recommend cleaning your mouth and brushing your teeth after you’ve eaten.  When you’ve got alternations in your taste buds, having really fresh clean mouth before you start eating can help you make sure that whatever taste profile that you’ve got left, you still get to sense it. Elise:                Yes, so it could be sucking on mints of a lemon drop. Lauren:            Doing a mouthwash beforehand. Elise:                Even some patients have said mineral water can be quite good to help break down any mucus or secretion. Lauren:            Everyone’s a little bit different in this space, Joe.  In that, some people lose their taste, some people taste every really amplified, or other things just taste like cardboard or metal, or really strange flavours.  A lot of it is based on trial and error and figuring out what works best for you. Joe:                 Yes, I think it’s also important, to keep in mind, I’ll just throw this in there, that it’s so important to realise that it’s most likely going to go away.  I remember going through chemo and all the things that I loved, like coffee, it just tasted… it was crap.  It was horrific. Elise:                We always say, what tends to go first is coffee and red wine. Lauren:            Chocolate I hear, as well. Elise:                All the finer things in life.  Keep those nice bottles of red for another time.  It will come back.  Buy the cheap stuff now.  You’re a cheap drunk. Lauren:            Look, Joe, there’s also some preliminary research on particular amino acids and the impact that they can have on our taste buds.  Unfortunately, at the moment there isn’t enough evidence to support the use of these amino acids.  It’s certainly an exciting area.  Certainly, when there’s more research that’s proven and evidence-based, we’ll be recommending that, or at least talking about it and presenting the evidence. Joe:                 How do you guys keep on top of this stuff, because obviously you have your business, but all of this new research comes out all the time, so how do you keep on top of it and how do you know what’s going on? Elise:                Joe, we love it. Lauren:            Yes, we’re passionate.  This is what we’re passionate about. Elise:                We live it and breathe it. Lauren:            When one of us finds a new journal article or a new paper, or even a new fad-diet that’s just come out on the internet, we usually send it to each other, have a discussion about it.  We like to write blogs, do research.  I think it really helps that we love what we do and that we’re passionate about it.  I know it sounds corny, but that saying: If you love what you do, you never work a day in your life.  It feels like that sometimes because I don’t mind sitting there and reading papers.  Everyone’s on the couch watching TV or out for dinner, we’re sitting there reading peer-review journal articles. Joe:                 Yes, that is pretty geeky, guys. Elise:                We’re lucky we found each other.  That we can get excited about science together. Joe:                 Yes, so you can geek out together.  That’s pretty cool.  All right, guys.  Next, I wanted to ask you about exercise.  I know it’s such a huge thing, but exercise and movement, they got hand-in-hand with nutrition.  What’s your perspective around that especially when it comes to cancer treatment? Lauren:            One thing I’ll mention first and then I’ll get Elise to speak to this later is that, the world cancer research fund recently had published a new set of guidelines with a really powerful statement that all cancer survivors, so anyone with a cancer diagnosis, past or present, should be referred to a nutrition specialist in oncology and an exercise specialist in oncology.  Blanket.  Absolutely everyone.  All cancer patients and survivors should have access to dietetic and exercise physiology or physiotherapy care. I think that just highlights how important nutrition and exercise is throughout the cancer treatment journey.  Both of them are so powerful, not just physically, but emotionally and socially, as well.  Like you said, they marry together so importantly.  Firstly, if you’re exercising, you need to nourish your body well, but also the combination of a good nutrition and exercise routine can really set yourself up for better health throughout your treatment, as well as longer-term minizine risk of any issues in health down the track. Elise and I are really fortunate, we work really closely with a brilliant group of not only physiotherapists, but exercise physiologists, Pilates groups, yoga groups, that work in the space of specialty cancer care, so that we can continue to provide our nutritional support, but alongside that exercise prescription which is really key to the health of these people. Elise:                Absolutely.  It’s so important, as dietitians, we work really closely with these exercise physiologists or physios because at the end of the day, our goals will compliment theirs and vice versa.  At the end of the day, that’s what’s going to get the best outcome for our patients. Joe:                 What are some of the best activities that you would recommend for people during treatment?  Is it yoga?  Is it going for a walk?  What are some of the things that you think are most helpful in that? Elise:                We’re not exercise physiologists, so we probably shouldn’t be recommending particular exercises, but certainly it’s really important to keep active.  It usually should be what feels comfortable for the patient.  If that patient things that they’re able to go and see the physio or go and complete their exercise physiology session, by all means.  Sometimes when they’re feeling too unwell, too fatigued, it’s important to listen to your body and to take that time to rest and recover.  Maybe just a brisk walk would be appropriate for those days straight after your chemo when you’re feeling a bit crap. Lauren:            There might also be days, Joe, when you can only make it to your letterbox and then you walk back home.  That’s okay, too.  The simple act of putting on your runners and making it that far is nurturing your body and giving yourself a chance to get out there in that space.  I put it to you, what sort of exercise were you able to manage throughout your journey? Joe:                 I did walking every night.  It was actually recommended to me by an oncologist.  I would drag myself out, like a zombie, because I would really just stumble along.  I have to say that not only did it make me feel better and gave me more energy, even though it wasn’t necessarily easy, but it also created a habit that to this day, two years’ onwards, I still go for a walk every single night.  It makes me feel good, not only in terms of when I was going through treatment, not only physically that I feel it picks me up, but also gives you a different headspace from lying in the bed.  Also, even when I was in hospital, I remember getting up from the bed and I would drag away my… Elise:                Your friend the IV pole. Joe:                 My friend the IV pole.  I would walk around the ward and it made me feel better.  It made me feel like I wasn’t just stuck in bed, that I could talk to people, I could look out the window.  It made a huge difference.  I would highly recommend that.  I think that is aligned with what you guys are talking about. Elise:                It makes you take on a health role as opposed to a sick role.  That’s a really important mindset to get into, as well.  Look, I think it would be really valuable to – we can certainly put you in touch with some amazing people in the space of the exercise and oncology world that would be great to share their knowledge.  I know that there are areas of exercise that can actually sensitise the body to respond better to chemotherapy and different kinds of cancer treatment.  Hugely powerful space, certainly, like nutrition, it’s underestimated in the oncology world. Joe:                 Fantastic.  I’d love to take you up on that later.  Absolutely.  Tell me, guys, what happens when eating is difficult, maybe you’re fatigued, or maybe on the other hand, you don’t have enough appetite, what do you do there? Lauren:            They are really common symptoms that we see very frequently in our practice.  Usually, the easiest strategies to implement is to have small and frequent meals.  Often, after chemotherapy or radiotherapy, or even after a really significant surgery, as you can probably – it probably resonates with you, Joe, trying to tackle a really big meal is overwhelming and can also make you feel a little bit sick.  We usually recommend splitting it up into five or six small meals a day, so that it’s not so overwhelming and so that you can get that little bit extra in over the day.  Often, grazing, as well, is a really powerful strategy. Sipping on nourishing fluids, so whether that’s smoothies, protein shakes, if that’s appropriate.  Fluids like that, which are, again, give you that little bit of extra energy and protein.  As well, fortifying your meals, so adding extra oils, nuts, and seeds, even adding butter.  Avocado, to help boost the energy in your meals is going to help you, firstly, to get in more calories, but particularly it’s important that you get in more protein.  Adding additional protein sources to those meals, as well. Elise:                A lot of that, too, Joe, is like you said before, about building habits and building routine.  Often, we do it in a step-wise process, if there’s just no appetite and no desire to eat, step one is to put something, anything in your mouth every couple of hours.  It might be one cracker or one nut.  That’s okay.  We build upon that base.  Ultimately, what we want to try and achieve is small meals often that provide your body with the nutrition you need each day.  It’s really easy to graze across the day, the graze on foods that don’t give you the full nutrition profile that you need.  That’s where building upon that base is really key. Joe:                 Tell me, guys.  I’m just about to learn the meaning of a new word, what is grazing?  I have this feeling of me going out into the backyard and starting to chew the grass. Elise:                We’re actually both champion grazers, I would say.  We practice what we preach.  The grazing is just having small snacks or just eating frequently throughout the day.  That might be while you’re sitting on the couch just having a handful of nuts, a bit of fruit here and there.  As opposed to a sit-down breakfast, lunch, and dinner, it’s taking some of that structure away from meal times.  In some ways, the opposite of what we would normally recommend is making your eating a little bit less structured, a little bit more mindless, so that there’s less attention and pressure put on that meal time.  It’s more about grazing gradually and snacking gradually across the day to get enough in, rather than relying on those structured meal times. Joe:                 I love that because mindlessness is so much better than mindfulness in this… Lauren:            It’s a lot easier, isn’t it? Joe:                 Exactly. Lauren:            Another powerful strategy, Joe, is eating in a positive environment.  Eating with loved ones.  Even when you’re going through treatment, if it’s going out to a restaurant that you really enjoy, making eating and food more of a celebration rather than a chore.  Even enlisting support from family members and friends to prepare meals or put things in the freezer, so that if you’re not hungry or you don’t feel like getting in the kitchen and cooking, that you do have food that’s available that’s nourishing and that’s tailored and appropriate to your needs. Joe:                 Yes, I think it’s also in a way giving yourself permission to eat what you want.  I remember being stuck in hospital.  The food was all right, but I think after a while, I just really had enough of it.  I remember my wife was sitting next to me and I was like, I just can’t handle any more of this.  Let’s just order take out.  We had someone deliver.  I don’t remember what it was, I think it was pizza, delivered it to the ward. Elise:                You wouldn’t be the first, Joe. Joe:                 Yes, sometimes it just works well I think to break it up and give yourself the permission to do whatever you feel like doing right now. Lauren:            What’s so hard is, you picture a hospital ward and a hospital bed, someone going through really intense treatment, the environment that they’re required to eating in bed, with the tray.  A meal that’s been delivered to them, that is just not ideal for someone who doesn’t have an appetite. Elise:                It’s not appealing, it’s not going to stimulate your sense.  Certainly, we know through working those environments, when that’s presented for you, even for a health person that’s not going through chemotherapy, it’s not that appealing. Lauren:            Nobody wants to eat in their bed.  Breakfast in bed, maybe. Elise:                Maybe on a Sunday, but that’s about it. Lauren:            Look, we know, Joe, that there’s no culture in the world that advocates for solitary eating.  No culture recommends that you should eat alone.  What Elise was speaking to before was bringing that social element back to food and taking the focus away necessarily from the nutrients that you’re eating and more around the nourishment of your body from a more holistic sense. Joe:                 Yes, exactly, that’s perfect because I think that brings us to another misconception there, because I think a lot of people feel, I’m speaking certainly about myself at a particular point in my life, that healthy eating, whether that’s during treatment or otherwise, is about denying yourself the foods you love.  Can you speak to that? Elise:                Yes, that’s exactly what I was talking about before, Joe, about how people want to in order to sell books or get hits, they want to instill fear in the reader or in the audience.  That fear for a lot of people is a sense of control.  People believe that if they restrict a certain nutrient or avoid a certain food that there are actually nourishing their body or doing the right thing in order to help their condition.  Where, it’s actually very much the opposite.  It causes a huge amount of stress, anxiety, and can also fracture relationships, as well.  I’ve had lots and lots of clients who’ve had wives in the room with me when the husband is really sick, in tears, just saying, “He won’t… he’s restricting this sort of food or he’s not eating that.” The stress that those restrictions puts on relationships is profound and can have even more of an impact than the treatment is having. Lauren:            I think what’s really key is that we focus on the foods that will do you good and that are positive to your health, as opposed to those that are going to impact any sort of negative health outcome.  Yes, it’s important to find balance and not to have your entire diet filled with foods that aren’t necessarily conducive to good health, but we know that much of our food supply is really good quality food.  If we focus on those and the positive impact that’s going to have on our health, it’s a much nicer space to be in. Joe:                 Yes, exactly, so it’s all about turning around and having a positive mind-frame as you’re dealing with treatment? Lauren:            Yes, for sure.  Restriction we know, firstly, it’s very challenging, and doesn’t last.  What for?  You’ve got to ask yourself, why you’re restricting that food and certainly if there’s a really strong medical reason or rationale for it, certainly, we’ll support you in that.  If it’s for a superficial meaning or some other advice that’s been provided without real merit, that’s when it can be really challenging. Elise:                Is it really worth it?  If it’s putting stress on you emotionally and financially, as well as your family, is that restriction really worth it? Joe:                 Yes, cool, that makes so much sense guys.  If someone wanted to find out more about you, maybe read your blog, or work with you individually, as well, what could they do? Lauren:            They could absolutely reach out to us, Joe.  We’d love to hear from anyone. Elise:                We’d love to hear from you all. Lauren:            Elise and I are very fortunate to have two clinic locations in Melbourne, soon to be three. Elise:                Soon to be three. Lauren:            At the moment, we practice out of clinics in Brighton and in Windsor, in Melbourne, and soon to be in Caulfield.  We also offer phone consultation services through our tele-health program.  We’re very accessible for anyone.  We’ve got lots of clients both nationally but internationally, as well.  If there’s anyone that we can support through their cancer journey with nutrition advice tailored to them, we’d be very happy for them to reach out to us.  They can do so either on our website which is: www.oncorenutrition.com.  On Core cleverly spelt: O-N-C-O-R-E. Elise:                Pun intended. Lauren:            Certainly, we’re accessible by email, we’ve also got a range of information available on our website, both in the form of fact sheets tailored to different cancer diagnoses and treatment types, but we also write plenty of blogs and articles and have recipes available on our website, as well. Elise:                One thing we encourage is if anyone listening has any requests or is unsure of any sort of dietary methods, please send us an email because chances are if you’re asking those questions, there are probably heaps of other people out there who also need those questions answered.  Lauren and I would be more than happy to help support you. Joe:                 Fantastic, thank you so much, guys.  I really appreciate all of your advice and your time. Elise:                Pleasure. Lauren:            Thank you for having us, Joe. Elise:                We’re also really enthusiastic about building our community and providing that evidence-based reliable information to everyone who’s able to access it.  We’d really encourage anyone who’s interested to jump online on the socials to join us, we’ve got Instagram, Facebook, LinkedIn.  We’ve got mailing lists.  We’d really welcome anyone who wants to join our community. Joe:                 Yes, you guys have a great newsletter.  I think I received a new one today. Elise:                Thank you. Lauren:            Do you like our jokes, Joe? Joe:                 Not really.  I love your recipes, as well.  It’s all cool.  I think it’s great.  You guys are going to make it fun and I think that’s what it’s about.  I think it’s all about combining really actionable advice, but also having the right attitude and mindset, which is so important when you’re dealing with cancer. Elise:                Absolutely.  It’s an absolute privilege to have had a conversation with you about just that today, Joe. Joe:                 Fantastic.  Thank you so much, guys. Lauren:            Thank you so much for having us.  

I’m super excited today because we have Linda who is a world-leading expert at applying mindfulness to dealing with worries and uncertainty, both during cancer and beyond.  Here are some things that we cover today: The truth about mindfulness Untangling past, present and future Two ways of coping with trauma Putting mindfulness into practice Step by step diaphragmatic breathing walk through and much, much more! Links About Dr Linda Carlson Mindfulness-Based Cancer Recovery Mindfulness Based Stressed Reduction Mindfulness-Based Cancer Recovery Book Am Mindfulness Mobile (Apple App store) Am Mindfulness Mobile (Google Play) Episode 029: What You Must Know About Clinical Trials Before Starting Treatment Full Transcript Joe:                 Tell me, what’s mindfulness and why is it important when you’re dealing with cancer? Linda:              Okay, well, let’s start with the basic question, what is mindfulness anyway?  If you look at the simplest definition, mindfulness is just paying attention in the present moment with an open and accepting attitude.  It’s simple but it’s not easy because when you think of where your mind normally is, there’s research saying we have anywhere from 50,000 – 70,000 thoughts every day.  50,000 – 70,000 individual thoughts.  Yes, they’ve done research where they ping people with little beepers and they ask them, what are you think about and they ask their moods.  It turns out that, make a guess, how often do you think that our minds are not in the present moment? Joe:                 Most of the time? Linda:              We might think that, but in this study, they found that about half the time people’s thoughts weren’t on what they were doing.  In conjunction with that, they also found that people were happier when their attention and their thoughts were in the present moment.  If you ask yourself the question, why would that be?  Why is it that when my mind is wandering, I’m less happy?  Well, you can look to where the mind goes often.  If you look at our habitual ways of thinking, our minds might be in the past. You might be reliving something and saying thing, or could have, should have, would have, or if only this, or if only that, things would be better.  Then you feel really down on yourself, you can have regrets.  You can get angry and resentful, right, when you’re thinking on the past, because you can’t change any of that.  You can get really wrapped up in blaming yourself for how things went.  Or, for a lot of people and a lot of people with cancer, their minds are zooming off to the future, they’re worrying about, what if this?  What if that? I don’t know what’s going to happen.  What does my future hold for me, so then you get all stressed out and worried, right?  All that ruminating in the past makes you depressed, all that worrying about the future makes you anxious, so you miss the moments when you live your life, which is only in the present moment.  It turns out when we are able to keep our attention and our awareness in the present moment, we tend to be happier because we’re not so stuck with things we can’t change or things that may never happen.  That’s generally the idea of mindfulness, is learning to be awake and aware in the present moment.  There’s also lots of myths around, what is mindfulness, that it’s important to dispel. One really common myth is that your mind just goes blank, right?  There are no thoughts and it’s all blissful and you’re floating like one of those yogis sitting in a lotus position.  That’s a common roadblock because people might try mindfulness practice and their mind doesn’t go blank and it isn’t calm and peaceful.  They think, “I don’t know how to do it or I’m doing it wrong, or I just don’t get it.  I can’t do it, it’s impossible.” Right? Joe:                 Yes, I’ve been there, done that. Linda:              It’s really important to understand that mindfulness or awareness in the present moment doesn’t always mean that it’s blissful because your present moment experience isn’t always blissful.  We can be aware and accepting of uncomfortable mental states, that’s still being mindful.  We often think of mindfulness as three main components called: IAA.  The first one is intention, so you make a purposeful intention that you’re going to try to be present in the moment. The intention for doing that may be just because you want to be more available and awake and aware in your life, you want to be present, or maybe you actually want to hone this skill for a particular reason.  Like, you want to help cope with a difficult time or work with a symptom like pain or insomnia or something like that.  That’s your intention, which is your guiding light.  Then the second component – intention is like the why of the practice.  The second component is attention, attention training, that’s the core of the practice.  That’s the what, is attention. Mindfulness is a skill that you have to learn through practice, just like you would learn to play tennis or play the piano.  You’re not a piano virtuoso overnight, and you’re not a tennis star by watching people play tennis or reading about it. Joe:                 Although, that would be nice. Linda:              Yes.  People love to read books about mindfulness but if you don’t actually do the practice, you’ll never get any better at it.  Just wanting to be mindful doesn’t make you mindful.  I would love to speak 12 languages, but I don’t because I haven’t practiced doing that, right?  The core of the mindfulness practice is attention training.  That’s when we purposefully turn our awareness towards what we’re paying attention to, and when our minds wander, like it inevitably will, you gently lead it back, over and over again.  Our awareness often is on something mundane in the present moment, like your breath rising and falling, or a sensation in your body, if you’re doing a body scan.  It can be any element of present moment experience. You can focus on sounds in your environment.  You can focus on sensation in your body or thoughts that are passing.  You have to have that vigilance to notice when your attention wanders and bring it back.  That bringing back, each time you do that, it’s training your mind to walk a different path, it’s actually strengthening neural connections in your brain that support the ability to be in the present moment.  The strong neural pathways we have now take us to the past and the future and analysing and judging. We have to retrain the brain to beat new paths.  We do that through repetition and attention training.  That’s the second component, the a is attention.  The third component is how we do it.  That’s the a of attitude.  It’s really easy and you’ve probably had this experience, to be very harsh and judgmental when you try to do mindfulness practice, like, “I suck at this, I can’t do it.  I give up.” Joe:                 Absolutely. Linda:              That’s obviously not helpful.  We want to apply attitudes of kindness and non-judgment, openness and curiosity, as well as self-compassion.  Thinking, wow, this is really tough.  This isn’t an easy thing I’m doing.  I’m just going to have to accept that it’s going to take time.  Another attitude is patience.  Another one is acceptance.  When we sit and pay attention to our experience, often, it’s not pleasant and it’s not what we would optimally like it to be.  Your mind is crazy and worrying and driving you up the wall, but can we accept that’s where we’re at, we’re having difficult emotions.  Can we be kind about that?  The attitudinal component helps soften the discoveries through the attention all towards the intention of being more present and awake and aware.  That’s mindfulness in a nutshell, I guess. Joe:                 Yes, fantastic.  I really love how you say that you have to have an internal reason of why you’re doing it, right? Linda:              Yes. Joe:                 Sorry? Linda:              Yes, I was just going to say, your intention may change, or it will evolve over time.  For some people, they may have really grand intentions just to become more self-aware and personal growth and ultimately, to be liberated from suffering and reach enlightenment, these types of objectives.  It also may be very mundane, I want to cope with day-to-day stressors in my life. Joe:                 Yes, absolutely.  I know how you mentioned that you focus on where you are on and you don’t allow yourself to wander off, to think about other things.  When you do, you have to be kind to yourself and let it go.  How do you actually focus on bringing yourself back to that moment?  Bringing yourself back to the space where you are now? Linda:              There’s this meta awareness, we call, right?  There’s a larger awareness that sees what we’re doing.  We’re trying to channel or develop the skill of this meta awareness.  Say, for example, we’re doing awareness to breath meditation.  You’re using mental noting to help you.  You’re noting to yourself in, every time you breathe in, you might be feeling the rising of your belly.  You might be breathing in and thinking in, rising, out, falling.  In, rising, out, falling.  Then you think, “I forgot to return that phone.” Then you might think, “I have to do it now or maybe I could do it later.” Then that meta awareness says, you’re off the breath, you’re off the breath.  It might take a while or maybe it chimes in right away and you go, I’m off the breath.  Then you say, let it go, I’m going to let the phone call go and then you’re going to come back.  In, rising, out, falling.  That’s the training.  That’s it.  Right there.  The noticing and the coming back.  Diverging from your focus isn’t a failure.  That’s how you get better, right?  That’s how you learn the skill, if you work constantly on your breath all the time in the beginning, then you’re already doing it, right? Joe:                 Yes, absolutely.  Tell me, Linda, is mindfulness and meditation, are they different? Linda:              Well, mindfulness is a form of meditation.  Mindfulness is also something a little bit broader because you can think of mindfulness in two ways.  Mindfulness is a way of being in the world.  You can be more or less mindful at any given time.  It doesn’t take extra time to be more mindful as you go throughout your day.  It’s just a way of being.  It’s almost like a trait.  Mindfulness is also a practice, mindfulness meditation.  That practice of sitting down and paying attention on purpose and training our attentional capacity.  That’s the meditation of it.  It’s a form of meditation practice.  There are many other forms of meditation practices, as well, that are practiced around the world.  Mindfulness is more like a sub-type of meditation practice. Joe:                 Cool.  How did you discover that mindfulness is something that really helps people during cancer? Linda:              Well, I had already been practicing mediation and yoga for about ten years when I started working with cancer patients.  I had some colleagues that also practiced yoga and meditation.  We all got together and said, this could really be helpful for the people we work with.  There are a number of features or elements of the cancer experience that made us think that.  I don’t know if you have a personal experience, but what’s it like to be diagnosed with cancer, do you think? Joe:                 Yes, I do have a personal experience.  It’s an incredible shock to the system.  I think you described it so eloquently when you said that you spent a lot of time, on the one hand, ruminating on the past.  You’re thinking, what could I have done differently?  Could I have picked up the cancer earlier?  What have I done in my life?  Then, again, like you said, you also spend some time living in the future because you spent time thinking, well, what’s going to happen, is this treatment going to work?  Is this cancer going to come back?  It’s incredibly difficult to stay and be in the moment, with the life that you already have. Linda:              Yes, exactly, so you’ve encapsulated the main challenges, that are uncertainty about the future, loss of control, right, because we often feel like we control the path of our lives.  We’re going to work for X number of years, maybe have a family, then we’re going to retire and live well into our 80s or 90s.  We feel like that’s something we have some control over, but then cancer steps in and that’s all turned upside down.  People often question, what is my life going to look like?  I don’t really have as much say as I thought I did. Then there’s this unpredictability about your treatments and you have to take time off work.  There’s loss of control, there’s this uncertainty about the future.  As you said, too, there can be, for many people, blame and guilt and shame about even being diagnosed with cancer in the first place.  Then there’s all the stuff you have to cope with because of the cancer and the treatments.  There’s insomnia that’s a very common symptom, fatigue from the treatment, super common. There can be cognitive problems that are a consequence of the treatment and the anxiety.  There can be symptoms like pain and then there’s usually anxiety and depression and decreased quality of life.  There’s a whole host of different things that a person’s having to deal with, right from day one, going forwards. Joe:                 Exactly.  That’s exactly right.  This feeling of not knowing what the hell is going on and trying to navigate your normal life, because that also doesn’t stop because you still have to do the things you always do, whether that’s work or family or friends.  Then you have to figure out this whole system and an entire new language around treatment.  Yes, it’s incredibly difficult not to be anxious and not to have your mind jump all over the place, right? Linda:              Yes.  We’re really good in western societies of one type of coping, which is called problem-focused coping.  This is writing the to-do list.  I need to schedule an appointment for this, I need to buy certain supplies, I need to book time off work and get someone to take the kids to school.  We can write all these lists and solve problems quite well, but there’s this whole other realm of coping called emotion-focused coping that we’re not very good at, often.  All of this emotional stuff that’s out of our control, the fear and uncertainty, and all of these difficult emotions that are swirling around, well, what do we do with those?  That’s where the mindfulness practice is so very helpful. There are so many features of it that really the people that I’ve worked with find very helpful in dealing with that loss of control and loss of certainty.  With the mindfulness practice, we talk about just accepting things as they are and really trying to do the best we can in the moment and letting go of outcome.  We also talk about these attitudes of non-attachment, which is this idea of letting go.  Of really making a distinction of things that we have control over and things we don’t, focusing on the things we can do. We can learn a mindfulness practice, we can learn how to respond to things in our environment in a more thoughtful way.  We can look at how we perceive events in our environment and do we blow things out of proportion, do we jump to conclusions?  Do we have these cognitive habits that are unhelpful?  Taking control of those sorts of things where you do have choice and you do have option and you can learn these skills and techniques. There’s so much really you can’t control, so not focusing on that stuff and instead, focusing on all the things you can do in the moment, in the day, that’s going to set you up for better days in the future. Joe:                 Absolutely.  I love how you break it down into this problem-solving way of coping and emotion-based way of coping.  Tell me, with mindfulness, does that mean that when you’re more mindfulness of being in the moment, when you’re more present in your own reality, that some of the negative thoughts, do they go away somewhere? Linda:              Yes, well, you’ll still have the negative thoughts, but you’re not feeding them, you’re not latching onto them and ruminating about them.  Another thing you learn when you practice mindfulness is impermanence.  We have this slogan: The only certainty in life is change.  Everything is coming and going all the time and it’s our need to make it a certain way and grasping on to wanting things to be one certain way and pushing away other experiences we don’t like, that’s what causes suffering. It’s not the experiences themselves because they just come and go.  If you are having a bad day, it’s comforting to say, well, this is going to pass, this will pass.  It’s another common saying.  This idea of just the recognition of impermanence allows us to accept difficult emotions, watch them, understand them, spend some time with them, then let them come and go at their own pace. Joe:                 Linda, that’s such a great way of looking at things.  I’m always the type of person who sees something negative and I jump on it.  You know, I think a lot of us do that. Linda:              It’s counterproductive because it’s only natural to have all sorts of emotions coming and going, especially with such a challenging life experience.  When we don’t allow the ones we consider undesirable or negative, we supress them or say, “No, I have to be positive, I have to put on a happy face.” Well, they’re just going to keep popping up.  I don’t know if you have the game whack-a-mole in Australia.  You don’t? Maybe it’s a Canadian thing.  It’s an arcade game where there are these little creatures, moles they pop up and you hit them with a stick and it goes down and the next one pops up and you hit it.  Anyway, the whole point is that you try to squish it down here, but it’s going to pop up over there when you don’t want it to.  If you just let it do what it’s going to do, it will run its course.  It’s when we try to supress emotions that they’re actually more harmful to us. Joe:                 That’s fantastic.  It’s all about not supressing them, but just observing them.  Like you said, it’s going to pass. Linda:              Yes, and observing them with this meta awareness I talked about.  You can be really anxious and feel it in your body and have an awareness of that anxiety that’s not anxious at all, if that makes any sense to you? Joe:                 Yes, I think it does because I guess you’re not – I’m thinking of, for example, insomnia is something that if you wake up and you want to go back to sleep, but you can’t go back to sleep because you’re thinking that you can’t sleep and you’re focused on it and it makes you… you’re running in a loop. Linda:              Yes, it’s like, I’m not sleeping, I’m only going to get four hours of sleep and I’m going to be wrecked tomorrow.  I really have to sleep. Joe:                 Yes, exactly. Linda:              You’ll never sleep then, right? Joe:                 Like you said, maybe just quite all right then, thinking that it will go away.   It will be what it will be.  What if I don’t get my perfect sleep or whatever, right? Linda:              Yes.  We actually teach people specific breathing techniques that help to calm your nervous system and bring on the relaxation response and also, occupy your mind, so it actually helps you sleep better.  That’s part of some of the teaching we do to patients in our programs. Joe:                 That’s fantastic.  Can you share some of those techniques right now, in terms of breathing? Linda:              Sure.  Well, really, the simplest thing to do to calm yourself down is just to switch over to a slower, deeper type of breath.  We might call it diaphragmatic breathing or belly breathing or slow breathing.  If you sit in a way that you can breathe, because often we’re slumped over and there’s not much room for movement, but if you sit upright and don’t even try to change your breath, but just maybe close your eyes if you’re comfortable, but just pay attention to how you’re breathing.  One thing you could do is put a hand on your lower belly and a hand on your chest, just to feel it better if you want. Then notice where there is movement.  You may feel some rising and falling in the chest or some in the belly, or maybe more in one area or the other.  Then notice also the length of the in and out breath, then the mind is probably wandering, so just notice that and bring it back to your breath.  Then slowly you can drop your hands if you want, but slowly just allowing that breath to become a bit deeper, so that you feel more movement in your belly and you’d be breathing in for a count of four, if that’s comfortable. Then breathing out the same, so maybe counting down.  For example, you’re breathing in, one, two, three, four.  Then out, four, three, two, one.  Then I like to add in a little visual image of a wave, as you breathe in, it goes up.  One, two, three, four.  Then as you breathe out, it goes down, four, three, two, one.   Trying to find a count that’s comfortable and release tension through the chest and the belly, then just following that wave of the breath. As you exhale, there’s a bit of a release of tension with your shoulders moving away from your ears.  Relaxing the muscle through the belly and the buttocks and the legs.  You can open your eyes from that, but how did that feel? Joe:                 That was great, Linda.  Yes, it was really great.  It really started with the breath, but it made my whole body feel more relaxed. Linda:              Yes, so if you pay attention to muscle tension in your body that you’ll notice, it’s always there but often we’re not aware of it.  As you exhale, that stimulates your relaxation response.  That’s a good time to let go of a lot of that tension you don’t need.  What that type of even breathing will do is bring you to balance between your sympathetic nervous system, which is your fight or flight reaction, you know, which revs up your body and increases your heart rate and your blood pressure.  The parasympathetic response, which is the relaxation, which tones down all of that.  Just a really simple even deep breathing will balance out those arms of sides of your nervous system. Joe:                 That’s fantastic.  Is that in some way related to something like chi-gong or even tai-chi in some way? Linda:              Yes, we’re actually doing a study now comparing mindfulness meditation to tai-chi chi-gong program.  Yes, those are forms of what they might call moving meditation.  Chi-gong especially uses a lot of control of the breath and different ways of breathing and moving to bring about balance to the nervous system in a state of relaxation and calm, as well. Joe:                 Yes.  I think it’s so incredibly useful during cancer because it’s such a stressful time.  People say, well, just take it easy and relax.  How are you actually supposed to do that, right? Linda:              Yes, there are lots of different things.  We call them mind-body therapy.  There are lots of mind-body therapies that have shown to be beneficial, just relaxation exercises.  Things like using imagery, self-hypnosis, or seeing a therapist for hypnosis.  Meditation.  Yoga, as well, has a lot of research, tai-chi, chi-gong.  All of these types of therapies are ways to relax physiologically through the nervous system.  Also, strategies you can learn for personal empowerment and taking some control over how you feel in the moment. Joe:                 Yes, exactly.  Linda, there are lots of negative emotions that come up during cancer.  You start to worry, of course, you know, like a pain or an ache may trigger worries.  You go down this rabbit hole of worries and negative thoughts that really affect you.  You really want to get these out of the way and break the loop.  What advice do you have on that front? Linda:              Fear of cancer recurrence is so common, even for people who have a really good prognosis.  Almost everybody talks about that.  You get an ache in your armpit and maybe that’s where it started if it was a lymphoma or something, right?  Then you start to think, it’s coming back.  Then you get all worked up and your body gets tense.  That tensions and the increased arousal in the heartrate makes the symptoms worse.  You think, it really is, now it’s spread.  I can feel it in all these different parts of my body.  Then you think, what if it’s coming back?  Is it going to be worse this time?  Within a few minutes, you’re digging your grave, right?  Yes, it’s very common.  The mindfulness practice helps you notice that right at the beginning. Ah-ha, I’ve got an ache or a pain and I’m starting to go down that rabbit hole, like you said.  You can stop it right there, you can say, no, I’m not going to go there.  The rule of thumb we usually tell our patients is, wait a week, okay, just notice it, use your relaxation practices, use your mindfulness to not get worked up.  If it’s still there in a week, then go see your doctor, make an appointment.  Usually, these things are so transient, that they come and go.  The thing that makes them worse is our worrying about them and us having all of that muscle tension and stress around the area.  It does make the symptoms worse. Then, of course, you think, yes, it’s coming back.  Then you’re running to the doctor’s office all the time, getting tests you don’t need.  Use the mindfulness practice, go to the yoga class.  Just noticing that you’re doing it is really the most important step.  It’s being like, this is a red flag, this is happening.  I know what this is, I know what I can do, I’ll keep an eye on it and I won’t ignore these things if they persist, but I’m not going to jump on every one of them, right? Joe:                 Yes.  Yes, absolutely.  Another thing that I stumbled upon, Linda, is after going through cancer and getting a good result, you start to really look at life in a really good way.  I’ve spoken to lots of people who went through this experience, as well.  You start to look at some things in a much more different, in a much more positive way.  You realise that things have changed, things will probably never be the same, but at the same thing, you’re not so much focused on things that are not really important, and you really start to put your energy and your time into things that you care about and into people that you care about, as well.  Finding something positive in your life after cancer, or despite cancer, what’s your perspective on that? Linda:              Yes, Joe, you’ve hit the nail on the head there.  In academic circles, we call this benefit finding or post-traumatic growth.  This idea, yes, people study this, we’ve looked at it with our people, as well, it’s this idea that a traumatic experience, something like cancer or other traumas, as well, can trigger people to take a broader look at their life and what does bring them meaning and purpose in life and where is the value.  If my life is foreshortened, because every person who hears that diagnosis, “You have cancer”, thinks, “I could die prematurely and is this what I wanted my life to be about?” You revaluate where you thought you were going and what’s really truly important.  If your time is limited, and all of our time is limited, you just realise it more concretely with the cancer diagnosis.  Is this how I want to live my life? We look at things like this, benefit finding, or post-traumatic growth, and also that concept of spirituality, which is finding a connection with something larger than yourself.  It might be a connection with other people, with community, with some kind of a higher power, with the universe.  Feeling a sense of interconnectedness, as well as this sense of meaning and purpose in life and, yes, revaluating the way you live your life day-to-day and we’ve done many interviews with people who go through the mindfulness program who talk about how that practice has facilitated their pathway through this personal growth. Joe:                 Yes, fantastic.  Linda, if someone wanted to find out how to get immersed in mindfulness, what are the resources that you can recommend? Linda:              Well, there’s lots of stuff online in terms of mindfulness training programs.  Well, specifically for cancer, I would say start with our book.  There’s the mindfulness-based cancer recovery book that Michael Speca and I wrote.  It really takes you week-by-week through the program.  It’s got scripts for guided meditations.  We’ve also actually just… I’m not sure if it’s released to the public yet, but we made an app out of that program.  It’s an app called: Am Mindfulness. Just A-M Mindfulness.  There’s a cancer journey within that that actually has teachings from me and Michael that we do in our class.  That one is specifically for cancer survivors and patients.  There are many, many others.  There’s Calm and Headspace and so lots of app-based things.  We also made an adaptation of the in-person program to a web-based real-time video conferencing program through a company called: Be Mindful. They’re in the States, but they do these video conferencing mindfulness-based cancer recovery sessions on a regular basis, so anyone can sign up for any mindfulness-based cancer recovery program.  Then there’s the generic mindfulness-based stress reduction that ours is based on.  There are people trained to provide those programs all over the world.  Starting with an NBSR program is a great way for anyone to start.  Then maybe going to more of the more cancer-specific resources after that. Joe:                 Yes, fantastic.  Thank you so much, Linda, that was fantastic advice. Linda:              Well, I hope it’s helpful. Joe:                 Absolutely.  Thanks so much for your time, I feel like it’s been fantastic.  Love it.  Love what you do. Linda:              I enjoyed it, too.  

With cancer comes uncertainty.  Often, you don’t really know what’s going on, yet, you have to make decisions over things that you don’t really understand.  How do you know what’s happening?  How do you know what’s the best option for you when it comes to treatment?  Is clinical trial the right way to go?  These are just some of the things we’re talking about to David who is a radiation oncologist and who also wrote a fantastic book called “Taking Charge of Cancer”. Here are some things that we cover today: How taking charge of your treatment can improve your chances Why understanding medical reports can make a difference Simple strategy to get a (free!) second opinion How understanding treatment goals can shape your decision making and much, much more! Links Taking Charge of Cancer Episode 029: What You Must Know About Clinical Trials Before Starting Treatment Full Transcript Joe:                 David, you say that taking charge of your treatment can really improve your chances.  What does it mean to you? David:              Taking charge of your treatment can help to make sure that you are getting the best possible cancer treatment.  We know that across the world, there are big differences in quality of cancer treatment.  By making sure that you are getting access to your medical records, understanding your medical records.  Making sure that you’re getting the best high-volume surgeons or radiation doctors, you can really make sure that nothing is missed and that things are proceeding as they should.  Unfortunately, sometimes in the media, we hear stories of cancer treatment gone wrong. One example of that is, not too far from where I am, there were a couple of breast cancer patients who had mastectomies, they had their breasts removed, only to find out afterwards that they didn’t have cancer at all.  That the original biopsy that was done before the mastectomy was done, it didn’t show cancer, but the report was misread by their surgeon.  Obviously, that’s very tragic and it’s something that we could avoid if we can start empowering patients to do things to take charge of their cancer, like getting their pathology reports and learning to understand them. That’s what the book really does, it’s meant to be a guide book on how to take those steps, how to understand these reports that are written in a language that many of us don’t work with on a daily basis. Joe:                 Yes, that’s a fantastic point you make, David.  What are the sorts of things that as a patient you should watch out for in the report, in the medical report? David:              Well, I think the first thing is to know which medical reports are needed.  Really, the important reports are the reports from imaging.  If you have a CT scan or if you have an MRI scan, getting the report from that.  Also, getting the report from the pathology.  The pathology report is something that’s written, if you’ve had a biopsy, or if you’ve had a surgery.  When you’ve had a biopsy or a surgery, the specimen that they take is sent to a doctor called the pathologist, who looks at the specimen under a microscope and issues a report. All of the treatment stems from the pathology report and the imaging for most patients.  Along with those two reports, usually when you meet your doctor for the first time, they also write a report, which we call a consultation report.  In that consultation report, they will summarise everything that’s going on.  It’s a fantastic tool if you can get a copy of that, to understand your type of cancer, the stage that you’re at and what the goals of treatment are.  Some hospitals now have a setup where you can login and you can access your reports online. At other centres, you have to go and get them printed off, which can come at a cost.  I find that many people, when they get copies of their reports, they really like having them.  What I often do when I see a patient who has had a scan, let’s say they’ve had a CT scan, I will bring their report in with them and I’ll underline the important things and I’ll give them that copy.  Then they can know exactly what’s going on. Joe:                 Yes, exactly.  That’s such a great point, David.  That’s something that’s always made me feel uncomfortable.  The fact that the person who is deciding my faith at various points of the cancer journey is the pathologist, is the person I never see, and I never talk to, you know, as a patient? David:              Yes.  Some situations, it’s pretty uncommon for a pathologist to reach out to the patient directly, but sometimes radiologists do that when someone has a scan.  Sometimes the radiologist will come out and talk to them.  I think the world has changed medicine has changed.  People are much more informed and they’re much more empowered.  I’ll give you an example of how these things can change.  Shortly after I wrote the book, I went in with one of my patients who’s had a scan of his brain.  That scan was looking for cancer.  I had read the report and I went into the room and I said to him, the scan was fine, there’s no sign of any cancer in your brain.  He said, okay, can I have a copy of the report.  I said, okay.  I hadn’t printed it yet, so I went back up and printed it and brought it in and I went through with him. One thing that I had missed, that even though there was no cancer there, the report had said, okay, by the way, we see a small aneurism that needs to be looked into.  An aneurism is an issue with a blood vessel, which in some cases can be quite serious.  Even though I had tried to provide the best quality of care.  I had just been so focused on, is it cancer?  Is it not cancer?  That I hadn’t read right to the end of the report.  I had missed that. By going over that with him, I was able to take a second look at the repot and I sent him off to have that aneurism taken care of.  It can really make a difference to get copies of these reports. Joe:                 Yes, that’s fantastic, David.  It just makes such a huge difference, as you gave in that example.  When you’re sitting down with a patient and maybe you’re talking about your report or your diagnosis, maybe you’re deciding which kind of road to take with treatment, how do you know the advice specialist is really the best one for you and your situation? David:              Yes, that’s a good question.  I think the first thing to do is to know what the goals of the care are.  Before we even talk about knowing that it’s the right approach for you.  It’s to understand what the goal is.  Is the goal of treatment being to get rid of the cancer?  Meaning, to cure it, or is the goal of treatment just to slow things down, knowing that a cancer is incurable, because unfortunately, of course, some cancers are incurable.  What we find is that a lot of times, we’re not doing a good job of informing patients of the goals of treatment. There was a study in the New England Journal of Medicine a few years ago, where they asked patients who were getting chemotherapy, what is the goal of the chemotherapy.  Is it meant to cure your cancer or is it meant to slow things down?  About three quarters of the patients who answered that question said that the goal of the chemo was to provide a chance of cure, but when they designed the study, all the patients that they were asking these questions to, were patients that were getting chemotherapy that was not meant to cure their cancer. They’re all getting chemotherapy to slow things down, not to cure it, but three quarters of them had the opposite impression.  I think it’s a failure on the part of our medical system of us as physicians, that we’re not doing a great job of communicating the goals, because once you know the goals, it can help you make a better judgment about how aggressive you want to be.  Often when the goal is for cure, then people will be more aggressive.  I, myself, if I had cancer, if the goal was for cure, then I would want to go all out because we’re looking at a long-life expectancy if you’re successful. If the goal of care is to slow things down, maybe buy you a few extra months.  Then, in my mind, and in many people’s mind, you start looking a lot more into short-term quality of life and side-effects.  I think if you’re really wondering if someone’s recommending the right treatment for you, the best thing is a second opinion.  I’ll tell you some ways that you can get second opinions without even seeing a physician.  For a lot of cancers, there are many options.  Joe, I know that you are well-versed in cancer, so you know the story of prostate cancer, how for some men, you can have active surveillance, you can have surgery, sometimes you can have internal/external radiation. There are so many different options, right?  How do you know which ones are best for you?  The best way is to get a second opinion.  A great way to get second opinions is something called a tumour board.  What a tumour board is, it’s a team huddle, where doctors who treat a certain kind of cancer all get together.  They’ll be different kinds of doctors, so at a prostate cancer tumour board, for example, there will be surgeons, they’ll be radiation doctors, they’ll be chemotherapy doctors, who we call medical oncologists.  That tumour boards, the whole group discusses a case. Usually, what happens is, they have a radiologist to look, again, at the imaging, and they have a pathologist to look again at the biopsy.  Everything is looked at a second time.  The group discussed the treatment options.  At many centres, particularly at bigger centres, they will have tumour boards.  It’s free of charge to have your case discussed there.  In the UK, from what I’m told, it’s required that all patients be discussed at a tumour board.  If you’re a patient with a new diagnosis of cancer, you could ask your physician, “Please can you present my case to a tumour board.” Then the tumour board will discuss your case and they’ll either come back and say, “Yes, we agree with the original recommendation, which was, let’s say it was for surgery, we agree with that.  That’s a great recommendation.” Or they’ll say, “You know, we thought of another couple of options that may be reasonable.” Or sometimes if they say hey, “We found something that’s slightly changed, either in the pathology or on the imaging.” That happens in about ten or twenty percent of cases, that when they go to the tumour board, something changes about the diagnosis about what they see on the scans.  Sometimes it can have a big impact. Even if it doesn’t, if the tumour board comes back and says, “Hey, we agree with the recommendation”, then you really have a lot of faith that the recommendation was the right one, because you’ve had this second, or even third and fourth, and fifth opinions because there are a lot of doctors on the tumour board. Joe:                 Yes, that’s such a fantastic point, David.  Also, because you get perspective from people in different fields.  As you said, maybe it’s a surgeon, maybe it’s a medical oncologist, maybe it’s a radiation oncologist who’s there, as well.  Maybe it’s another specialist in there, as well, so you really get all of your bases covered. David:              That’s right.  I know that you know this very well, Joe, but there are these biases in medicine, in cancer treatment, where doctors tend to recommend the treatments that they give themselves.  I, as a radiation doctor, I know that I’m biased to recommend radiation and surgeons tend to recommend surgery.  I don’t think it’s anything sinister.  I think it’s just that we believe in what we do.  What can happen is, a patient is sent to me first, to a radiation doctor.  I would give them all the choices, but in some cases we’re a bit blinded to what the other choices might be. Really getting an opinion from different specialists can really be helpful.  It’s one thing I say in my book, is that if a surgeon is recommending surgery, you should ask them, is radiation an option for me?  If it is, can I meet with a radiation doctor and vice versa.  If you’re meeting a radiation doctor and they say, radiation is recommended, then what about surgery?  Is that an option?  Can I talk to a surgeon?  Sometimes they’ll say, that’s not an option because of this and this and this, or they might say, “Yes, that’s a great idea.” Then it just gives you a sense of confidence that you are getting the best treatment. Joe:                 Yes, exactly.   You know, it’s such an empowering thing to do, as well.  When I was deciding on my treatment, my medicinal oncologist sent me on to have a conversation with a radiation oncologist to see if it was the right option.  Initially, it was kind of scary because I thought, well, aren’t you supposed to tell me what to do?  Then I realised that it’s such an empowering thing, of really looking at your options, talking to different specialists, then you make the decision about what’s going on in your treatment.  Sometimes with cancer treatment, you lose control of how things are.  Being in a position where you are the one makes a decision is a really good place to be in. David:              Absolutely.  We are in a world now where patients want to make decisions, as I think they should.  I think 30 years ago, medicine was very paternalistic, and you were told, “Hey, this is what the recommendation is going to be, and this is what you need to do.” Patients were just expected to nod and listen.  I think people, in all walks of life, in all areas of society, people are much stronger advocates, which I think is very important. Joe:                 Yes, absolutely.  Also, David, from personal experience and from speaking to lots of people who went through cancer, I know that often the worst time for a patient is when you’re waiting for results from a scan or a test.  It’s just really nerve-racking.  How do they take charge of that situation and what do you do there? David:              That is a difficult situation, Joe.  The two most anxiety-provoking times are the times before treatment when you have a diagnosis of cancer, but you don’t know how it’s going to be treated, you don’t know how the treatment is going to go.  I find that’s a very anxious time.  The time right before a scan result, even in the days leading up to the scan, people will tend to start to lose sleep.  Then the scan is done and then you have a few days until you have it reported.  There really is no way to speed that up. In some scenarios, like I said, if you have access to your chart, you can login and read the scan report, even before your appointment, the other way is really just making the most of that time, because let’s say you have the scan on Monday and the report is not going to be available for a few days and you meet your oncologist the next day, that time can’t be shortened.  I try to tell people to practice their mindfulness techniques, where they ground themselves and say, “Okay, the scan is just going to tell me what’s already going on, it’s better for me to know than not to know. Then come what may, we will do our best.” Just because I’m having a scan doesn’t mean that we’re going to find something, because most of the time, I would say on average, a scan that is done in follow-up doesn’t show anything.  That might be a bit of anxiety that can never be fully eliminated.  Even I know people who have been out from treatment coming up to five years and the chances of being cured are already in the high 90 percent for some of these cancers.  Even then, the anxiety is there.  I don’t think we’ll ever fully get rid of it.  It’s more about trying to manage that. Joe:                 Yes, absolutely.  Look, David, when you’re about to start treatment again, it’s also scary because you really don’t know what to expect.  How do you deal with that?  What advice do you have on that front? David:              Yes, so I would say there are two things to keep in mind.  Often, people feel extremely rushed to get into treatment.  Sometimes there are delays and situations where things need to be really rushed, but for most patients, there is time to collect information and to make a decision that’s best for you.  The example of a man with an early-stage prostate cancer, there is certainly time to make a decision because for many men, even just doing surveillance is an option.  There’s really not a rush.  Some cancers present with more extreme life-threatening situations where something has to be done quickly. A lot of times, there is the opportunity to sit and think and get the information and get your chart and make a good decision for yourself.  The other thing that can often be quite helpful during that time is speaking with somebody who has been through it.  Many cancer centres have programs where you can meet with some survivors who have been through the situation.  You may have some friends or family who have been through it.  Also, there’s an organisation, there are some organisations online that will connect you with somebody. I’m not actually sure what’s available in Australia specifically, but there are, in Canada and the U.S., one is called the Cancer Hope Network and they will connect you with a survivor of your type of cancer.  If you have a lung cancer and you’re going through chemo and radiation, they’ll connect you with someone who’s been through there, through that to tell you what it’s going to be all about.  That I find can be quite helpful because then you can see what is on the horizon for you, hopefully. Joe:                 Yes, no, David, it can make such a huge difference, that’s really great advice.  Really, in that case, you’re talking to someone who has been in your shoes, who potentially went through the treatment you’re about to go through right now and had to make similar sorts of decisions, had to deal with side-effects.  It’s really the best place to be when you’re combining the expertise of your medical specialist and your medical team with real-world experience of someone who’s been down that road before. David:              Right, exactly.  Just knowing someone who’s been there can be very helpful. Joe:                 Absolutely, David.  I know we’ve touched on this before, but how do you really find the right surgeon or the right hospital to do the operation, if that’s the route you’re going down? David:              Yes, that’s a great question.  I think people have had the feeling in the past that medicine is a one-stop shop.  You go in, you meet a surgeon, or you meet a radiation doctor, and you go for it and you get what you get and you’re going to have good care.  We know that there is actually a lot of variation.  It’s not like craft dinner, where you can go to… I don’t know if they even sell craft dinner in Australia, but you go to the grocery store and you buy your pre-packaged dinner.  Whether you buy it in ones tore or another, or one country or another, it’s pretty much going to be the same product.  This is a lot different. It’s more if you think about going to the same musician, where some might be fantastic, and some might not be quite so good.  There are a lot of tricks towards finding somebody who is quite good.  I go through some of these in my book, but one of the things that I think is very easy to ask about is whether you are seeing a high-volume doctor, and whether the cancer hospital you’re going to is a high-volume centre.  What I mean by that, being a high-volume centre, is a centre that treats your kind of cancer a lot. Or a surgeon that does your type of operation a lot.  We know that across a whole bunch of different cancer surgeries, surgeons who do it a lot and hospitals that do it a lot get much better outcomes.  It’s just the idea of practice makes perfect.  It’s an example of this, in the U.S.  for example, if you are having your oesophagus taken out, which is your swallowing tube, your oesophagus for oesophagus cancer.  If you go to a high-volume surgeon, someone who’s doing it a lot, your chances of dying from that surgery, the chances of dying from that surgery are about eight percent, which is actually a fairly high risk. It’s a significant risk.  We take that risk because that’s the way to cure the cancer.  In some patients who go through that surgery, they will be cured and live out the rest of their lives.  If you were to go to a low-volume surgeon, someone who’s not doing it very often, the risk of dying from the surgery is not eight percent, it’s about twenty-two percent.  The numbers go up dramatically just because of the expertise at the centre.  I think the one question you can ask your surgeon is, are you considered a high-volume surgeon for this kind of cancer? If you don’t read the book and don’t read more about it and they say no, you can say, well is this a surgery where you think a high-volume surgeon would be important?  It seems to make a big different for the more complicated surgeries.  The more complicated the surgery, the riskier it is, the more that having a high-volume surgeon would really help.  It’s certainly a question you can ask very easily. Joe:                 Yes, absolutely.  It’s such a staggering difference that it can make to your survival.  It’s really great that you can point out the difference that it can make and the things to look out for.  David, what’s your take on clinical trials?  How do you know if a clinical trial is the right option for you? David:              Yes, clinical trials are incredibly important.  As part of my research, I run clinical trials, I can actually give you an example of a big impact that we’ve had with a clinical trial.  Basically, clinical trials are where all the new cutting-edge treatments are tested before they’re brought into mainstream.  A clinical trial is sort of like an experiment, it’s not that people are being treated like a guinea pig, that’s not the way it is at all.  What’s happening is, doctors think that they might have an improvement on treatment.  The clinical trial might be a way for you to get a treatment that doctors think will be better but haven’t yet proven it. Sometimes you go on a clinical trial and you get a drug or a treatment that proves to be much better, so you’ve benefitted from going on the trial because you’ve got that new drug.  The other benefit of going on a trial is that you get I think much better care.  The reason why I think you get much better care is two things, one is that usually you have a trial coordinator who’s in touch with you or a trial nurse who’s in touch with you.  It serves as your point of contact.  When you have an issue with your care at all, your contact is this primary nurse or this trial coordinator. It’s this inside track to getting help if you need it anywhere along the way.  A trial also gives a protocol for the doctors who are treating you.  For example, if I have a patient who goes on a clinical trial and I am treating their lung cancer and I’m designing their radiation, I will go through the protocol because they’ll be very specific instructions on how to design the radiation.  I think that’s helpful for physicians because it’s just another double-check to make sure that all the checks are being done properly. If you’re lucky, you’ll go on a trial where the new treatment is quite beneficial.  We’ve seen that, for example, with the new advent of immunotherapy in the past five years, which has really changed the treatment of a lot of different cancers.  We didn’t know that it was going to change the treatment five years ago, it was only available on trials.  Some of the patients who went on these trials, they got this immunotherapy, we didn’t know if it was going to help, but many of those patients were helped.  You can see them in the news, these people who went on the first trials of immunotherapy for melanoma, for example, they had an incurable melanoma. Then five years later, they’re still doing well because they got the immunotherapy.  These won’t all be blockbusters, but sometimes they are.  Even in the radiation world, we just presented a study this year, where we looked at using radiation to target metastasis.  Metastasis means that the cancer has spread.  We use the radiation to try to kill some sports of cancer that have spread, which normally you wouldn’t do.  What we found was that, I’ll just take a step back, we asked people, “Hey, do you want to go on this study? If you go on this study, some of you are going to get this experimental radiation and some of you are not.  We don’t know for sure if it’s going to help.” Fast-forward now, what we found was that we pretty much doubled the number of people who are alive five years later by doing this radiation that was considered experimental.  Sometimes by going on a trial, you can really get access to a treatment that doctors think might be better. Joe:                 That’s fantastic.  Tell me, what happens when you’re a patient and you’re deciding between the standard treatment and the clinical trial?  How do you make that decision? David:              Yes, that’s a really good question.  Often, there are a couple of different situations.  Once situation is that there is standard treatment and then clinical trials are completely different.  They could be a completely different approach.  In that case, you really have to weigh the pros and cons.  Are you a person who wants to go with something that’s tried and true?  Or to take your chances on something that might be a bit more helpful, but that might come with a cost of a bit more time involved for you for being on the study.  Or maybe some side-effects that we don’t anticipate. You have to look into yourself to see how that resonates with you.  Also, the other benefit of going on a trial, of course, is that it will help teach your patients.  Other trials, when you enter it, there are a couple of different treatments you might get, where you are assigned to a treatment at random.  A computer flips a coin and let’s say you either get the standard treatment or the experimental treatment.  You don’t choose, the doctor doesn’t choose.  Sometimes patients can feel, well, I want to choose, I don’t want a computer to choose for me.  What I say to patients is, rest assured, that the doctors are only trying this treatment in a clinical trial if they have good reason to believe that it’s going to be helpful.  Doing a trial for a physician costs years or decades of work and work that you don’t often get paid for doing a trial. It’s just work that you’re doing because you really think that it’s going to help and it’s endless hours of paperwork and that sort of thing.  Doctors always go for trials that they really believe something is going to help.  I think that can eb reassuring that even if you can’t choose your treatment by going on a trial, the doctors who are designing the treatment in the trial really do think it’s going to help.  They don’t know that for sure, but they really do think that it’s going to help. Joe:                 Yes, you make such a fantastic point, David.  This was actually one of the things that I love about oncology and just about everyone I’ve been through, my personal experience but also, of course, through my podcast and people are so passionate about getting the best outcomes possible for people.  Yes, like you say, a lot of people are doing clinical trials precisely because they want to get the best result possible. David:              Yes, we want to do the best because our patients, many of them are also our friends or they’re family members or they’re us.  We really want to move things forward.  We’re never going to be happy with the status quo, no matter how much we move the bar, we’re always going to want to do better.  It’s interesting because people often ask me, why do I do cancer research?  Cancer research sometimes, you can spend your whole career doing cancer research and not really make a huge chance.  Sometimes experiments go well, something they don’t.  Sometimes trials go well, sometimes they don’t show a benefit. What many of us think is that what we’re doing here is we’re stepping up to the plate.  We have our baseball bat, I know that cricket is probably bigger in Australia than it is baseball, but I’ll stick with the analogy, nonetheless, but it’s the same one.  You’re stepping to the plate and you have your bat, the ball is coming at you.  You’re going to swing, and that’s you research.  Sometimes you’ll swing, and you’ll have a hit and you’ll have a homerun, sometimes you will strike out.  At least what reassures many of us is that if we go to swing, if enough of us go to swing, we will have some hits. We see some of the hits are small and proven.  Some of the hits like the immunotherapy are big improvements.  In the end, even going up and taking that swing is worth is because although it costs this extra time and it’s extra work, it really does, on the whole, make a difference for cancer patients. Joe:                 Yes, that’s perfect, David.  Yes, that analogy totally checks out.   David, I love your book.  Tell me, how did it come about? David:              Mostly, I do research.  I never thought that I would write a book for patients, but life takes you on these turns.  You never exactly know how things are going to go.  I guess, Joe, if I asked you decades ago, if you were going to be running this podcast about getting good cancer treatment, you’d probably would say, “No, I would never envision that.”  The way that my life went was that, my best friend, my best friend Bob, he was diagnosed with colon cancer.  That was five years ago.  Bob and I at the time were in our mid-30s.  Bob was a teacher. When he was diagnosed, he had a best friend who was an oncologist, so I helped him make sure that he got the best treatment and he saw the best surgeons and that everything was looked after.  He got copies of his reports and he got copies of his scans.  We went through them all.  What Bob said to me at the time was that, “This was something that anybody could learn to do.  Not everybody has an oncologist as a close friend.” Even he, who is not in the medical profession, he’s a teacher, so he’s well-educated, but he didn’t have a medical background, he was able to do this kind of stuff. What we realised was that people really needed a step-by-step book on how to do this.  There are lots of books about cancer, there are thousands and thousands of books about cancer.  As far as we know, this is the only one that talks about getting good-quality treatment.  Fast-forward a few years, there was actually a mistake made in his care where things weren’t done as they should.  Basically, what happened is that he was lost to follow-up.  Meaning, he was supposed to have been followed for a period of time and he wasn’t.  That unfortunately lead to a bad outcome. We’ve lost Bob now, Bob has passed away.  In his last few years, he and I put this book together.  I would write a chapter and he would read it and say, “Dave, this is understandable, I understand this.  Dave, this needs to be reworked.” It really is a legacy for him, this book that will hopefully help other patients. Joe:                 Wow, I’m sorry to hear about your friend, David. David:              Yes, well, thank you, Joe, I appreciate that. Joe:                 That’s such a really noble goal and it actually reads to me as a conversation, as a conversation you’d have with someone. David:              Yes, that’s how it came about.  What I decided when I was writing the book, people are selling everything online.  You can go online and buy whatever you want.  People are selling IV vitamin C and almond seeds or apricot seeds, which we know don’t do anything.  People are making money off of it.  I didn’t want this to be seen as that.  Even though this is a commercially available book, all the royalties, instead of coming to me, they actually go directly to a cancer research charity in the city that I live in, which is called London. None of the royalties comes to me.  That allows me to advocate for the book as much as possible.  Nobody will ever question as to whether there are financial motives, because obviously it’s all been done for charity.  I think that’s helped to convince people that my motives are good and I’m just doing this to try to help cancer patients. Joe:                 Yes, that’s fantastic, David, good on you.  Thank you for what you do in the world. David:              Yes, thank you.  Thanks for the call, Joe, it’s really been enjoyable chatting today. Joe:                 Thank you so much, David.  Tell me, what’s the best way to find your book online? David:              Yes, so it’s available on Amazon, that’s probably the easiest.  I don’t know all the Australian book stores.  We also have a website that goes with it.  The website is called: qualitycancertreatment.com.  That has many resources that are quite helpful.  It has some patient videos about how to decipher reports, how to keep track of your tests, how to keep track of your department, how to understand your radiation plan, how to find clinical trials.  Those videos are freely available, so people can find that on the website.  Again, which is, qualitycancertreatment.com. Joe:                 Fantastic.  Thank you, David. David:              Thanks very much.  

When you’re dealing with cancer, your oncology nurse is there for your every step of the way – asking you about your symptoms, administering treatment. Your nurse is answering the most pressing questions that you have right now and ultimately, helping you preserve your dignity at a time when you really need it the most. Right now, we’re talking to one amazing nurse, her name is Natasha and she’s helped so many folks like you and me to get through treatment in the best way possible.  Natasha also does a lot of really amazing work around clinical trials, so we get to find out what that’s really like, so let’s dig in! Here are some things that we cover today: Why self-compassion is critical throughout cancer treatment Dealing with uncertainty How clinical trials can work for you and much, much more! Links ANZUP Trials Group ANZUP ClinTrial Refer app Australian New Zealand Clinical Trials Registry Episode 029: What You Must Know About Clinical Trials Before Starting Treatment Full Transcript Joe:                 Natasha, it’s so scary to go through treatment, I guess because you don’t really know what’s going on and you don’t really know how things are going to turn out.  Is there really any way to prepare for cancer treatment? Natasha:         No, I don’t think there is.  Knowledge is important but also listening to your body and getting to know your body and what doesn’t feel right for you and what does feel right for you and gathering that information as much as possible about what’s normal for you and what’s not normal for you.  Trying to do that right from the very beginning.  I think that’s really important, but just being nice to yourself and looking after yourself as much as possible.  You know, I heard someone call it self-compassion, not being hard on yourself and going, “I’ve got to be tough, I’ve got to be strong.” That’s good to believe that but also, I feel sick because I’m having some really heavy-duty treatment with side-effects and I feel really bad at the moment.  Just not being hard on yourself about that.  Do you know what I’m saying? Joe:                 Yes, absolutely.  I think it makes so much sense because you do have a tendency or even to put on a brave face and go, “Yes, I can do this.  I’m okay”, when in reality it just wears you out.  You have to balance your normal everyday life, you might be working, you might have a family, you might have friends, you might have everything going on.  At the same time, you’ve got this treatment that explodes into your life.  You have to figure out how everything works and dealing with side-effects.  You have to navigate the system.  You’ve got oncologists and your medical team and how does it all fit together?  Yes, it can be a bit of a maze, right? Natasha:         It can.  To be honest with you, I’ve been a nurse for a long time, I don’t want to say how long because it will probably be embarrassing for me.  I’m still working it out.  The system is always changing.  It’s not like there’s this static way that things go and then you go, “Okay, now I know how it works, we’re going to okay for the rest of our lives.” It’s constantly changing. You’ll come back in six months and you don’t call that person anymore, we’ve reworked thing.  Now they’re more efficient and you’ve got to call this person.  There’s just constant change.  There’s change in your everyday life.  There’s change in how your body is responding to treatment.  There’s change in what’s going on in the health system.  It’s a lot to navigate.  You still have to have a job and pay your bills.  You know, be with your family.  It’s a lot. Joe:                 Exactly.  What advice do you have on dealing with uncertainty, especially for someone who’s going through treatment? Natasha:         Probably my best advice is to say uncertainty is okay and it’s normal.  If you’re feeling uncertain, that’s a normal thing.  We just don’t know.  We don’t know how you’re going to respond, we don’t know how your cancer is going to respond.  We don’t know what’s going to happen, but we’re going to do our best to get the best for you, the whole way through.  Right from this moment on, we’re going to do our best. You need to ask questions and ask for help and just do whatever, reach out to us as much as possible because that’s what we’re there for.  I think that would be my advice.  That uncertainty is normal and just get whatever help you need.  Let that sit with you until you start to get some certainty and some grounding on what’s going on, I guess. Joe:                 Yes.  Absolutely.  That makes so much sense.  As an oncology nurse, do people ask you a lot of questions, do patients ask you questions?  Is that the right thing to do? Natasha:         Yes.  If anything, I go asking them questions, as well.  People do ask a lot of questions, there’s no question that’s not an unusual question, I guess.  If we don’t know, we know who to ask, or who to get to help.  Yes, we like questions. Joe:                 That’s good to hear.  Obviously, as a patient, you have aches and pains during treatment, how do you know whether it’s cancer or whether it’s the side-effect or whether it’s something that’s totally unrelated? Natasha:         Yes, that is one of those things that just comes with experience.  Especially when it’s an unfamiliar ache or pain that you’ve not had before.  We all have our aches and pains, especially as we get older, they become more pronounced.  There’s the normal aches and pains that we get, you know?  Sore knee from walking too many stairs.  Some of our treatments can exacerbate those pains, if you’ve got a little bit of arthritis and you have some treatments, that can actually get exacerbated, that’s normal. I think it’s just that thing that comes with experience.  You just have to listen to your body and be kind to your body and that sort of thing.  Just get to know yourself, your body is changing.  When you have treatment, all the cells in your body are changing and responding and you’ve just got to learn the new ways, I guess.  Just constantly speak up.  If there’s a pain that’s worrying you, speak up about it, let the doctor assess you, let the nurse assess you, do some blood tests.  Have a scan if people think you need to have a scan. Just do what you think you need to do.  If your gut-feeling is telling you something’s not right, then just say, “I’ve got this pain, my gut-feeling is telling me it’s not right.” We will listen to that and we will look into that. Joe:                 That’s makes a lot of sense.  Natasha, you see a lot of people who go through treatment, is there anything someone can do to really go through treatment just in a better way, to get through it in a better shape, mentally, emotionally, socially?  What do you think?  What advice do you have on that front? Natasha:         Well, there’s so much research out there about this sort of thing.  We’re learning more and more about it.  I think it just goes back to basics of exercising regularly, don’t go crazy.  Just have a walk.  Even when you’re really tired, a walk can just pick up your mood, get out in the sun.  Wear your sun hat and your sun screen and that sort of stuff, but just get outside, get some fresh air.  Eat a nice healthy breakfast.  Do whatever you can.  If you’ve got problems with nausea, try to get a plan in place to help manage that.  Just try to do whatever you can for having a good quality life.  Have friends over, even if you’re feeling rotten, just have people over.  Grandkids or neighbours, whatever, have people over.  Just be gentle with yourself about it.  Yes, I think exercise, good food, good company, I think that’s a pretty good way to live all the time. Joe:                 Yes, that’s the way with or without cancer. Natasha:         Yes, that’s right. Joe:                 That’s fantastic, Natasha.  Look, clinical trials, why are they important? Natasha:         Well, most of us, for myself and the oncologists I work for and Allied Health team members, the reason we do clinical trials is to give our patients access to more treatments and more modes of care that wouldn’t normally be available to them.  That’s the main reason we do it.  There’ll be some treatments that are new and cutting edge.  If we were to wait until they were normally available on the PBS, that’s not a treatment option available here and now for that patient, so that’s why we do clinical trials. We don’t always know that it’s going to go well, but most of the clinical trials that we get have had many phases before we actually do them.  They’re really important as part of our health system because they offer an alternative form of treatment.  They also increase knowledge and research.  They help us find better treatments for people and just build layers and layers of knowledge.  There’s also a lot of research that shows that hospitals that do lots of clinical trials actually have better care and better outcomes, their patients usually do better. I think it’s because there’s always people analysing and assessing how we look after people and evaluating it.  We’re always trying to do things a bit better.  We just don’t get stuck into the same old, same old when there are better options out there, if that makes sense?  There’s certainly a lot of data that shows, if you’ve got clinical trials happening, even if you’re not on a clinical trial, patients do a lot better in those sorts of institutions. Joe:                 That’s so great to hear.  I think that’s fascinating because that’s a real incentive for people to really consider going with a clinical trial, but also just going to a hospital that, as you say, does clinical trials.  Tell me, as a patient, how is going through a clinical trial different to standard treatment?  Just in terms of dealing with it day-to-day? Natasha:         Yes, there is the uncertainty, we don’t actually know if the clinical trial treatments are better than what we already do, because of that uncertainty, we have to do a lot more tests.  Keeping a little closer eye on you.  We’re trying to save money, that’s an incentive by the health system, trying to fall in what would be normal treatment and say that we’re not doing a lot of extra tests that costs money, but we keep a much closer eye on you which demands a lot more of you usually time-wise, with us probably calling you and asking you how you’re going?  We’ll do an extra assessment when you come into see the doctor.  There’s just that extra level of time and attention. There are often extra blood tests involved because we are keeping a very close eye on you.  With clinical trials, they’re very heavily regulated.  We’ve got very strict protocols because historically, there has been periods, like in the 60s where trials weren’t done properly.  Now, we have really strict rules that we have to follow.  That means we’re a bit stricter with our patients because of the strict rules that we’re supposed to be following.  I think that’s probably the biggest thing, is they’re really structured and yes, they’re not as flexible. Joe:                 I think that’s great because you know that there is lots of structure and process around it.  It’s not just random things that are happening.  You’re not the guinea pig. Natasha:         No, you’re not the guinea pig.  There is that idea out there, but, no, I think clinical research has become very sophisticated.  Yes, no, by the time they get to us, unfortunately, all of that experimental type stuff has been tested and it’s more about real treatment in large populations of patients. Joe:                 Exactly and getting real outcomes for people. Natasha:         That’s right, yes. Joe:                 As a patient, how do you know if the treatment is working or not, like when you’re going through a clinical trial? Natasha:         Well, we’ll be keeping a close eye on you with your tests.  It depends on how the trial is designed and what the trial is trying to achieve, but the standard is usually they’ll be blood tests with different markers.  There’ll be scans, they’ll probably be done a little bit more frequently in the beginning.  The biggest way of knowing is if you start to feel better.  That’s how you know if the treatment is working.  Usually, people start to feel better and that is usually a much earlier marker that treatment is working, then the scan. Joe:                 Cool.  Tell me about the follow-up you do with people because, like you mentioned earlier, that you follow-up sometimes for quite a few years actually, how does that work? Natasha:         We usually do it for safety, just to make sure there are no lagging effects from treatment that we don’t know about.  Initially, we’ll see people more frequently.  We might see them 30 days after they finish treatment, sometimes we see them 2 weeks, 30 days.  Just very close time periods.  It might stretch out to three months and then stretch out to six months, then stretch out to once a year.  Then we might just find them once a year and say, “How have you been?  Has anything been going on?  Have you been seeing your GP?” Just to make sure there aren’t any unanticipated consequences.  If there are, we get on top of it quickly rather than it just not being addressed.  A lot of the treatments that are done with a clinical trial are specialised.  We need that specialist vigilant attention, just to make sure everything is okay.  Yes, you know what, I personally think that’s fantastic, because even with a standard treatment, you’ve got regular follow-up anyway. Joe:                 I think that’s great because personally, going to see my oncologist makes me feel great because I’m going, well, just making sure that it’s all on track.  It also keeps me focused just on my life, living day-to-day, just being focused on the present and living in the now.  What do you think about that? Natasha:         Yes, I think that’s great.  That’s a great way of looking at it.  It’s like a routine flag of, well, this is where I’m at, at the moment, I think that’s good.  It’s the right thing.  If you get caught up in all the other stuff and it’s great that there’s that, all right, this is where I’m at, and that’s feeling pretty good. Joe:                 Yes, exactly.  Thank you.  Natasha, do people that you talk to believe that they made the right choice about signing up for a clinical trial? Natasha:         I haven’t really had that discussion with many people.  I just think it just becomes part of what’s happened.  To be honest with you, I’ve never had any discussions with anyone about what was the right treatment or what wasn’t the right treatment.  It’s like everyone’s got their path their taken, this is the result of that path.  I don’t know.  I can’t think of any time when anyone has said they are glad they did, or they regret it.  I might have forgotten. Joe:                 I was interested to what you’d say, but now you say that people don’t really have those conversations, it really makes sense to me because when I think back to myself and when I think to some of the treatment choices that I made along the way, I probably don’t meditate on that too much.  It’s happened, and I am where I am.  You just move on, right? Natasha:         That’s right.  We do take the decision-making quite seriously and making sure that people are making their own choices and they’ve got all the information they need to make that choice.  We take that really seriously.  It’s something that we get trained to do.  I guess people because they’re making their own choices, then that is what it is.  I think maybe if people were being pressured by others to make a choice they didn’t want to, they maybe regret.  There’s quite a structured process with letting people make their own decisions, providing them with the appropriate information. Even if people do give consent to go in on a clinical trial, that consent is ongoing, so people can change their mind at any time.  If they start on a clinical trial, it doesn’t feel right, and they say, “I’m out, I don’t want to do this.  I want to change to this.” Then that’s what happens.  Maybe people are just making whatever decisions work for them when they need to.  I would hope that’s what we do.  I’m just guessing, but that’s maybe why I haven’t had anyone say that because we certainly have had people who started on clinical trials and just said, “This isn’t for me.  I really want to go to Europe for six weeks.  I really don’t want to do this.  Can we do something else?” That’s totally fine. Joe:                 Cool.  I think it’s really special for anyone going through treatment, whether that’s a clinical trial or standard treatment, has a nurse like yourself that they can talk to on a regular basis, whether that’s every day or whether that’s every hour, whatever that may be.  To ask questions and to be able to get some comfort and to ask about aches and pains and worries and to get all that addressed.  What do you think about that? Natasha:         Yes, I’d hope that’s what we were doing.  I’d hope that people thought that we were doing that, because that’s what we try to do.  Yes, I hope that we were there as a resource, to hold your hand when you need someone there.  To high-five you when things are going great and if you need more information, we’ll find the answers for you, do you know what I mean?  It may take us a while, we might need to find out stuff, do more investigations, take your blood pressure, but we’ll find out the answers for you. Joe:                 Natasha, I think you’re being unnecessarily modest, you guys, oncology nurses, are saviours and yes, I want to thank you for what you do in the world because it’s so important.  We need it.  It’s such a huge crucial role for the patient.  I know that I’ve had a number of oncology nurses that we with me through treatment, it’s been absolutely incredible because I do think it’s different from nursing in other areas, it’s just such an involved thing in a way. Natasha:         It is very involved.  Yes, because I worked in intensive care for a long time, I loved working in intensive care, but it was a different type of nursing, it is about living in the moment.  It’s hard to explain.  It is a different type of nursing, it’s very rewarding, though. Joe:                 What’s different?  How is it different? Natasha:         I just think people sometimes say to me, it must be hard working in oncology.  I just go, no, I’ve got it pretty easy, actually.  It does sound cheesy, but people inspire you every day.  There are people that will turn up for treatment having gotten up at four o’clock in the morning to do something.  I don’t know, human beings in crisis are incredibly inspiring.  To watch them just put their life back into the pieces that works really well for them.  I don’t know, it’s just really inspiring.  People are really amazing.  It’s real or something. I don’t have the words to describe it.  I’m sure there are some very eloquent people out there that have written about it, but it’s just very real.  Like you were saying, about when you see the oncologist, it just makes you go, okay, I’m in this moment.   I don’t find that I’m daydreaming about other stuff when I’m at work, it’s really about what’s happening here and now, it’s very much like that. Joe:                 Yes, that’s fantastic.  I really love that because it goes back ways, that it is rewarding, obviously, for you, as well.  Again, Natasha, thank you so much for your time and thank you so much for what you do and the difference that you make.  I think it’s huge as a nurse, in terms of clinical trials and making sure that your people get access to the best treatment available and ultimately, get the outcomes that they want, which is hopefully a cure, right? Natasha:         Yes, that’s what we try to do.  If we’re not doing it, just tell us, you know?  Just say, I really need you to do this, this is not working well for me.  We really want to do what we can. Joe:                 Absolutely.  Thanks a lot, Natasha.  I really enjoyed it. Natasha:         Thank you.  Thanks very much.  I really enjoyed it, too.  

I have a really special guest in Sami who is an expert in exercise and cancer who will share why exercise is so crucial during cancer, and how you can do it in a way that really helps you to get the outcomes that you want and also do it in a way that is safe and is really going to make you feel better over the long-term! Here are some things we cover today: Why exercise is crucial during cancer treatment Types of exercise that will help you most during recovery Surprising fact: doing exercise saves you money on health The key to living an active lifestyle that serves you Simple rules of thumb for better nutrition and much, much more! Links Cancer Wellness For Life weBuild Episode 012: Your Nutrition Needs During Cancer with Julie Lanford Full Transcript Joe:                 Sami, you know cancer and exercise, you don’t think of the two that go together.  Tell me, why is exercise important during cancer and after cancer?  Is it even safe? Sami:               Definitely, I’m going to address the safety thing first.  The safety and feasibility studies on exercise and cancer have been going on about 15 years now.  We’ve really determined that or nearly every single type of cancer, maybe some of the real rare cancers we haven’t studied in clinical trial, but the safety and feasibility has always been great.  You’ll certainly see an adverse event once in a while but not very often. I think one of the biggest things that we know about cancer and exercise is that so many of our cancer treatments, or just the experience of cancer, the more sedentary behaviour, just the lifestyle changes and also, the not feeling so good, lead people to be more deconditioned.  Exercise when done correctly really helps combat those side effects.  I think what’s really important for people to understand is, if they exercise, if they improve their strength, their function, it helps them reduced side effects even years after their diagnosis and treatment. People that don’t exercise after treatment don’t always rebound the same way that somebody that exercises.  Not only is it safe, I think it’s one of the most effective and under-utilised tools.  I think in large part because people are scared.  They’re just not sure what to do, which we understand as exercise oncology people, it is the biggest barrier that we have. Joe:                 Yes, fantastic, Sami.  What do you do?  What sort of exercise can help you during treatment? Sami:               I think one of the most important things people need to understand is not all exercise is the same.  I think that’s the exact question we ask.  One thing to keep in mind is that walking tends to be the most recommended or prescribed type of exercise, but walking is really the same muscles as doing your activities of daily living or taking care of your daily activity, making food or getting dressed, etc.  For a lot of folks with fatigue, it’s not helpful for them to dip in the same gas tank and use the same muscles.  We’re really pushing people to resistance training, to build those strength muscles back. Let’s say you were doing laundry, every single week, you were carrying four or five loads of laundry up the stairs, down the stairs in your house.  Right, then you go through cancer treatment and what happens to that task?  Well, somebody might do it for you because people want to help which is great.  Whatever those lifestyle changes are, and you don’t do that laundry for maybe two months.  When you go back and do that load of laundry, the first time you go walk up the stairs, it’s hard. A lot times, those strength muscles that you don’t use, you lose, and so we really recommend a lot more of the resistance training type of exercise because that’s actually going to reduce fatigue the quickest and help people get back to their activities of daily living.  Resistance training simply means overloading muscles.  Standing out of your chair might be resistance training for some, just with body weight.  Others, they might need to add five-pound weight or a sack of flour or a milk jug.  Anything that overloads muscles is always considered to be resistance training.  Honestly, the most effective type of exercise. Joe:                 Fantastic.  Tell me about this idea of prescribing exercise, is it like an individual program that you create for people? Sami:               It’s always individual because you have to ask people, what do you like to do?  What do you not like to do?  People always say to me, “Well, I don’t want to run.” I’m like, well, that’s good because we don’t really recommend running as the first type of exercise.  We take into account a few things.  We take into account people’s history.  If they’ve never exercised in their life, just them starting to move in a different way may feel different and they’re not sure how their muscles should feel.  They’re not sure how to adjust for what feels like pain, which you and I might know as muscle burn, but they might say, “Why are my muscles hurting?” We take into account that and their preferences, what their availability is?  Do they need to exercise at home, in a gym, at work, in the basement?  Whatever that is. We also really take into account their cancer, their treatments and their side effects, and anything related to maybe surgical changes.  When you boil all of those things and dump them into a big pile, it does become very individualised, but keeping in mind that we really do prescribe and recommend strength training first.  I always start with, okay, I want you to be as active as possible, but your exercise program is going to be focused on building muscle.  Here’s how often you do it and here’s something that you avoid etc.  Individualisation is key but honestly, the exercise recommendations that we have that are really basic and kind of simple don’t allow or teach exercise professionals how to individualise. Those are some of the gaps that we’re working on literally throughout the world.  How do you take somebody with certain types of cancer or stages of disease and make it individual?  I think that’s the big struggle right now even for our cancer survivor population, is finding professionals that really look at them for them and not for their cancer.  I’d love to say that we’re really good at it.  I think some people are.  I think that’s the biggest barrier for our survivor population, is knowing how do I find somebody and what do I do?  Or what do I not do?  Because it is very individual. Joe:                 Speaking of cancer survivors, we have some probably pretty unique challenges, as in, first of all, your body may be deconditioned after treatment, but you’re also worried about late effects and after affects, all sorts of things.  What advice do you have on that front, that is specific to cancer survivors? Sami:               I think the biggest thing that we really work on is educating a survivor of how important and what exercise is going to do.  I think we all know we should move more, and we should eat healthy, right?  Then what’s to say that I go, I’ll just forget it, I’d rather have my glass of wine and sit around and watch Netflix all day.  We really sit down with people individually and especially our survivor population and explain to them why this is so important.  Everything from reducing side-effects during and after treatment, to sometimes impacting survival. Or another really great study that just came out recently for cost of healthcare out of pocket, was cancer survivors and breast, prostate, and colorectal, that met the minimum physical activity recommendations per week, which were 150 minutes, that’s about 22 minutes per day.  They had 36 percent less out of pocket expenses related to healthcare.  What we felt was those patients, and this is what the study said, really looked at how in the big picture exercise, just fitting those recommendations impact how that person lives. Financial barriers are one of the biggest challenges for patients and something that we hear a lot.  Looking at, hey, this is a way that you can improve your life after cancer.  To me, that’s a survivor, someone living well after cancer, that’s the goal of survivorship.  It’s selling that to people individually.  Some people will say to me, do you know what?  I lost all the muscles in my arms, or I can’t get on the floor with my son or daughter, or I can’t take my dog for a walk.  It’s really addressing how are we going to help them get their life back. For most survivors, they really think that cancer took that away.  Before the cancer, they were living a certain life.  Then the cancer experience happened, and all of these things happened and now, their life is different.  How do we use exercise to get back their ideal life?  I think that’s the opportunity that we, as exercise professionals, need to hone in on and really push forward.  We’re not going to hurt you.  If chemotherapy and radiation didn’t hurt you, I assure you we won’t.  Right.  It’s sad.  People are like, “Well, am I okay?” You’re in chemo right now, I assure you, this is much better.  It’s so true. Joe:                 Yes, absolutely.  It’s so great that not only exercise makes you live longer, but as you say, it can also help you save some money.  One thing that I personally never realised before starting exercise, is it also gives you more energy in your day-to-day life.  I used to be the type of person who would laugh at people who would say they feel better after exercise.  Now, I can’t believe it, I just feel so much better.  Why does it happen?  Why does exercise give you all this extra energy, right? Sami:               Well, there are two ways exercise helps.  The first way is that quick way, which is just endorphins.  Those feel-good hormones.  You get the same endorphins when you run into somebody you enjoy hanging out with, or you watch a great show and you laugh a lot.  I tell people that are just not motivated, you know what, before you get off the couch, I want you to pull up your phone or your iPad or whatever and I want you to pull up funny animal videos.  I want you just to laugh for a little bit, it will change your mood in that dopamine response in your brain, now go work out.  If not, you’re just thinking, “I’m so tired.” Those are those endorphins.  I tell patients, that’s what happens in the first few weeks after exercise.  Over time, we really are building up your engine. I’m not really a great car person, I’m married to a car guy, so I’m going to use a car analogy because I think it suits most people.  It’s like I tell people, I live in the mid-west in the United States, so we have trucks here, right?  If you’re driving your big truck, instead of your V8 engine, we give you some little two-cylinder European car engine.  Your trucks is not going to move as fast or it’s just going to be a slow grind.  If you have that little engine, everything is going to be harder.  If we can build your engine, which comes from exercise as well as nutrition, everything is going to get a little bit easier. I always tell people, what’s your favourite sports car or your fast car and let’s build your engine to be that sports car.  That makes sense to people.  If they go through this experience of cancer, they also forget what their sports car was like.  Do I believe exercise improves energy?  Heck yes.  We have to start somewhere.  We also need to be mindful that just because you’re motivated doesn’t mean that you should start with an hour a day.  It’s really being smart with that and really talking to somebody about, hey, what’s a great place to start? I’d rather people get consistent and build up what they do daily before they start increasing their amount per day, or even really their intensity.  Consistency is really a key. Joe:                 I love the car analogy that you used.  Speaking of nutrition, I know that’s a whole huge area in itself.  What is your take on nutrition and cancer? Sami:               Really, one of the most important things we tell people is, food is fuel.  You have to eat.  Also, this goes back a little bit to my car analogy, you’re not going to take your car and zip it to the back of your house, get your garden hose, and fill up your car tank, right?  If you put junk in your body, you’re not going to run as well.  While I don’t think there’s a great cancer diet, per se, I think it’s really important to lean on good nutrition, quality foods when possible.  I realise that there are also barriers to getting things that are fresh or even organic. I tell people, do the best that you can.  Try to eat the least processed that you can.  Protein is actually going to be one of the most important things for people that I work with.  The only fuel for your muscles is really protein.  If you’re eating just carbohydrates, you will get energy from those because that’s a source of fuel for your energy output, but not for your muscles.  That’s probably the number one thing that we push patients, either in the cancer treatment world or even in survivorship or clinical exercise world is, protein, protein, protein.  Sometimes even outside of the clinical recommendations.  Everybody is really individual.  Gender plays a role here.  Pre-existing body comp plays a role.  That’s actually why finding someone that’s knowledgeable is key.  The biggest thing I want to address about nutrition is the concerns that people have related to specifically eating sugar. While I wish that we could say black and white we knew, because honestly, if we knew sugar caused or fuelled cancer directly, if we had clinical evidence, which we just don’t, it would give us a solution or tool in the cancer world.  We don’t.  However, sugar, sometimes it okay.  If you enjoy it once in a while, have your sweet an enjoy it.  Daily, we really see that sugar is more of an inflammatory.  Also, a lot of our patients have diabetes issues, of pre-diabetes issues, or body composition issues that cause them more insulin production. I think the big thing that we need to realise is that it’s not helping you feel better.  Do I say not eat sugar?  Well, no.  I just showed you my piece of chocolate.  I think once in a while is good.  Honestly, thinking about food as fuel is really what’s key.  Eating clean, non-processed foods whenever possible is ideal. Joe:                 Yes, I love this kind of analogy, again, because I think what you’re saying is, you’re using fuel, just in a sense that you only need a certain amount to really keep you going, right? Sami:               Exactly.  I think that’s where our culture, you know, we really go towards the bigger meals because we think we’re getting more for our money.  Not really understanding what your body needs and what your metabolism or your caloric output is, it puts a lot of us in a bad place.  People struggle with gaining weight.  This clinical evidence is not necessarily that the cancer treatments cause us to gain weight.  Certainly, hormone suppressive in certain populations, whether it’s breast or prostate, or even testicular, all of those populations will lead to loss of muscle. Based on the treatments because we’re supressing those hormones.  That muscle loss leads to slower metabolism.  What happens if you have a slower metabolism, you can’t eat the 2,000 calories a day that you did before cancer, your metabolism might only burn at 1,500.  Well, if you’re eating 2,000 calories a day, what’s happening to those extra calories?  It becomes storage.  That storage is usually what people complain about.  Although, it’s important to exercise, it’s also important to eat right for you.  That’s actually where sometimes people get lost.  I encourage people if they are struggling, track what you eat for a few days.  Really look at what you do.  I’ve done that.  It’s not always fun and pleasurable to go, well, there you are. If you really want to make changes, sometimes putting your calories and your foods into one of the apps on your phone or even on the computer, it’s really eye-opening.  Weighing out food for a few days.  Not that you have to do that all of the time, but if you really want to make changes, sometimes you’ve got to get down and dirty and really look at what you’re doing, or what you’re not doing.  I think those are some of the most important things and body composition is helpful for all of us. Joe:                 Growing muscle helps boost metabolism? Sami:               Yes, because muscle is the only metabolically active tissue on your body.  Your heart is a muscle, right?  If you think about that, that’s your primary muscle, that’s the most important muscle.  All of your muscles that you use, your arms, your legs, your head, your neck, everything, all of those muscles when you use them, they’re like their own little engines.  They need fuel.  The more muscle you have – think of your big bulky people that you meet; do you know those big bodybuilder guys and how much food that they eat every single day? Or someone that’s really active, I know rugby is pretty big down under.  We’ve got American football here.  I think it’s really the amount of calories that those individuals eat, but you look at the amount of muscle that they have.  If they don’t eat those calories, they lose their muscle because they’re burning so much every single day just at rest and then also when they’re active.  For patients, we need to really think about what their goals are.  If they’re wanting to gain muscle, and most people really need to gain muscle for strength goals and functional goals, as well as metabolism, we need to keep that in mind. If a patient, as an example, is underweight, and they start exercising.  I have a really specific talk with them and use the dietician to say, “Okay, you now are going to be burning more calories because you are putting muscle on you and that muscle is active, so you need to eat more.  You can’t just eat what you used to eat.” We have to also be mindful of what adjustments we need to make, as we go. Joe:                 That makes so much sense, Sami.  Is there anything else that you would recommend for someone to be in good shape mentally, socially, emotionally when it comes to cancer? Sami:               I think community is really key.  I think a positive community is one of the most important things.  I think finding people that you can just talk to, or just know that they get it makes a lot of sense.  We run a functional fitness program in Kansas City and we have felt that the power of that group is the community.  The people know that the person standing next to them understands the same fears that they have.  I find that putting cancer survivors together and the work that you do with your podcast just makes them say, “Yes, we me.  I totally thought that.” Or, “I had that same fear and I didn’t know who to ask.” Communities are a really key piece.  I also think finding recovery or enjoyment in life is a really key piece.  We always go, go, go, go, go.  I’m certainly that person.  Then I hit this time point in my week that I’m done, I put my phone down, I put my computer away.  It’s just myself, my family, or my loved ones.  You just do something fun.  I don’t really care if someone texts me or if an email comes in.  I think that it’s sometimes hard to disconnect for people and really focus on that recovery. It’s one of the most under-utilised things that we have, is taking care of ourselves.  If I don’t take care of me, I can’t take care of others.  I think those are probably two key pieces that we don’t talk about enough, but people should find.  Honestly, I tell people, again, if you’re having a bad day, funny animal videos.  Always funny animal videos.  It’s the way to go.  It’s easy, it’s free, and it’s always fun. Joe:                 Yes, that’s fantastic, Sami, you give such great advice because so often, we spend a lot of time looking after other people.  Sometimes, especially if you go through tough times, you’ve got to put yourself first, right? Sami:               Yes, absolutely.  I think that really goes back to just the basis of diet and exercise.  If I’m eating junk just because someone around me is eating junk, then I’m not taking care of me.  I think sometimes it’s hard to say no to something or to turn somebody away.  In cancer, I tell people cancer comes with casseroles.  People want to take care of you.  They’re like, “I’m going to bring you a casserole.” You feel bad, but you don’t really want to eat it.  I’m like, well, why not?  Be confident in taking care of you or tell people what you want. Be specific.  At the end of the day, we all individually are most responsible for ourselves.  I know that I need to take the time to exercise every day.  I need to take the time to go see people that are fulfilling to me and do things that I love.  I need to eat well and also, I enjoy a good glass of wine now and again.  Really, what is Sami want?  What is it Joe wants?  What are those important factors?  I think we forget that as we go, especially when you go through a cancer experience and you kind of forget who you are. Joe:                 Yes, absolutely.  That makes so much sense.  Tell us about your exercise program that you’ve got for those folks dealing with cancer. Sami:               We do a couple of things.  I’ve been doing exercise and cancer for about 15 years.  I started really seeing people way out, like, three/four/five years out of a diagnosis and treatment.  They just were like, “I never really got my life back.  I never really got me back.” Then I started working in the clinical setting and seeing people very early and seeing them in the clinical world, where there are exam rooms and treatment facilities.  I realised that to teach people to move, I need to move with them or show them how to move or coach them how to move. We started a community-based program that’s a small group program.  We do functional fitness.  Functional fitness is basically exercising that mimics improving everyday life.  Remember my laundry basket example from earlier?  We teach people to do the same exercise that will help the with their activities with daily living, but just living well.  I want them to be able to get something off the floor, get themselves off the floor, put something on the top shelf, carry something heavy.  All of our exercises are based upon those kinds of movements.  We also really work on increasing people’s heartrate, because I want them to get aerobically conditioned, as well.  We do mobility and recovery. We do all of that in a group setting because it’s more fun as a group and people will work harder if the person standing next to them is also working hard.  There’s this psychological piece of, you look out of the corner of your eye and you think, “They’re doing it, I’ve got to keep going.” We realised the power of the community.  Our community is all different types of cancer.  It’s men and women.  We’ve got everything from pre-vivors, people who have had the genetic mutation gene diagnosed and surgeries, all the way to individuals with advanced illness.  We have a two-time pancreatic cancer survivor, we have a head, neck, colorectal, ovarian. You name it.  We’ve got a variety of groups.  It really doesn’t matter what type of cancer they have or exactly what their course of treatment or surgeries is, but they get it, because they’ve all been affected by that word.  Our community also extends into caregivers and supporters because we feel like cancer affects everybody.  I think it’s also important for our caregivers to have something to help themselves, because they’re often very busy caregiving. We measure a lot of outcomes in our program, we measure fatigue, we measure depression, we measure body composition.  We’ve really learned that people that do these exercises really three to four times a week only, for 30 – 45 minutes, they have had significant improvements.  No matter where they are in their stage.  I think it’s the pixie dust, that people should be moving.  I think it’s the community that makes it so impactful. That’s something that I can’t do myself.  I just built a place where they can come and that’s actually what I’ve done other time.  They show up, they bring others.  They stay, it’s amazing.  I just sit back and smile because I just see how positively it impacts them and impacts me. Joe:                 That’s fantastic, Sami.  What’s the website? Sami:               Our main website is: Cancerwellnessforlife.com.  We are actually just opening up a new fitness facility that we’ll own.  We had partnered in another facility.  That new fitness facility, so depending on when your listeners listen, is Webuild4life.com.  That’s actually going to be our fitness-based program of our company.  That gym is going to be opening up here a few weeks in Kansas City.  We had some great opportunities and we’ll get getting some grants to build up some fitness videos. One thing that I’m really excited about is also to develop some YouTube and online content, because I want people anywhere in the world to be able to get what we do, and to be able to access it, no matter where they are, what time-zone they’re in or what they need.  That’s really one of my biggest goals, is to spread it out.  We’ve got some great funders.  It’s my dream come true, to be honest. Joe:                 That’s so fantastic, Sami.  Good luck with that.  Thanks so much for your time and thank you so much for what you do in the world.  I think it helps so many folks. Sami:               Thank you for having me.  I appreciate it so much.  Thanks for great questions.  Have an awesome, awesome, day. Joe:                 Thanks.  You too.    

Look, I know there are just a million things you need to worry about when you’re dealing with cancer – you have to plan around treatment, worry about side-effects, and keep your family and friends in check… It’s tough, but there are also many solutions out there to make life easier – and that’s what we’re talking about today with Haryana.  Haryana takes her incredible medical expertise and she’s transposing it over the real world, to find better ways of dealing with cancer, from the time that you’re diagnosed to the life after treatment. Here are some things we cover today: Why patient voice needs to be an integral part of clinical practice The criticality of clinical trials and what they can do for you Making decisions over treatment Best tips to prepare for your specialist appointment and much, much more! Links Dr Haryana Dhillon – The University of Sydney Cancer Council 13 11 20 Question prompt lists for people with cancer – Cancer Institute NSW Episode 007: How To Use Your Inner Resources To Better Deal With Cancer with Suzanne Chambers Full Transcript Joe:                 There’s so much great advice here.  I’m sure you’re going to love it.  Yes, Haryana, I’ve noticed on Twitter that you went to the ANZUP Pedalthon, what was that experience like? Haryana:         It was great.  I went last year but I didn’t ride.  This was the first time I had been riding because I’ve had now two grants from the below the belt Pedalthon, so I went last year and was just a part of a panel discussion.  This year was great because we got out early and did the ride, I had all of the teammates that I had, so we were on the ANZUP dream team.  We had all been funded by the below the belt money.  It was just really nice to be part of that.  It was a great feeling because there were more than 250 riders.  I’m not the fastest rider, so it was pretty impressive when the lead pack went fast.  They were very speedy, and it was tight all the way through.  Until the very end.  It was good.  Great fun to be a part of it. Joe:                 Yes, that’s fantastic.  What a great turnout, as well. Haryana:         Yes.  It was.  Good fundraising and I think part of it, I think it was just really nice, we did another panel discussion at the end over lunch, it was just really nice to be able to demonstrate what we do with the funding and how we use it.  We had two people who were looking, one person who was looking at bio markets for new ways of delivering treatments for prostate cancer.  Someone else who was ways of trying to identify how people are responding early on. Of course, the project that I was doing about the patient experience and the patient reported outcome measures, so trying to incorporate those into clinical practice, so we could pick up earlier what their symptoms are.  Being able to explain to people that’s what we do, and the trials groups is not just about new treatments, but it’s about the whole experience and just trying to help people to be able to live longer, but also live with less symptoms and with a better quality of life, as well. Joe:                 Yes, that’s fantastic.  Haryana, tell me about the project that you’re going to be working on, about the symptoms, what’s that all about? Haryana:         There’s been a lot of interest over the last few, well, quite a long time, actually, about trying to incorporate quality of life measures and patient reported outcomes into clinical practice.  It’s been a bit challenging to do that because the measures that we used to need to be scored and then it’s not really quite clear how you might best deliver that information back to the clinicians to make it easy for them, to incorporate that. A few years ago, there was a principle study where a team in the U.S.  had done this, they actually demonstrated by incorporating patient reported outcomes into routine practice, they increased the survival of the patients in the study, as well.  It seemed that if we were looking after people better and being more responsive to their symptoms and side effects to the treatment, then we were helping them to live longer, as well.  What we’re trying to do it, take an app that one of my nursing colleagues from Queensland, Natasha Roberts, has developed, to make that available to patients with GU cancers and to get them to rate their symptoms once or twice a week whilst they’re going through treatment and when they’re on treatment breaks. Then we can look to see whether we’re picking up additional information and symptoms that the clinicians aren’t picking up when they’re back in the clinic.  To see whether or not the patients will actually use the app and fill that out, there’s a lot of discussion about whether people who have cancer have got sufficient digital skills and willingness to actually engage in filling out.  We’re using smartphones or tablets to do the questionnaires.  We’re looking at whether it’s feasible for them to do that and then what we learned from that in terms of the symptoms and how we might use that information back in clinical practice.  Ideally, what we’d like to do is to be able to use this type of information as a routine in all of ANZUP’s trials in the future, so we can be a bit more responsive to patients and their symptoms, but also to use it to try to be incorporated into clinical practice. Joe:                 Yes, that’s really cool, Haryana.  You know, it instantly makes me think that it’s something that might even help people on the level of just being listened to, you know? Haryana:         Yes, well, I think that’s one of the things that’s really challenging, the time that patients and families have with their healthcare professionals who are looking after them are sometimes quite limited.  They may sense that some of the information that they told to their clinicians because they don’t think there’s time to talk about it.  This may be a way of helping us to overcome that and to actually use those patient reported symptoms to better direct the conversations that clinicians and patients have when they’re together, to make sure that they’re actually addressing the most important needs that people have at that particular time.  That they might not have otherwise talked about. Joe:                 Yes, that makes so much sense, Haryana.  I know that’s a huge part of clinical trials, is getting a lot of feedback.  I know that’s something that you’re really passionate about.  Tell me, with respect to doing clinical trials, what are, in your opinion, some of the biggest myths and misconceptions that people have about going through a clinical trial? Haryana:         I think really one of the biggest misconceptions is that clinical trials are only offered at the end of life, or when all other treatments options have been exhausted.  That’s really a big problem for us to try to overcome.  We want people to understand that we have trials right through from prevention of cancer to surgical procedures and supported care, as well as all of the other treatments that might be relevant to someone.  The critical thing about it is that this is actually a really good way that you can ensure that you’re getting the best supportive care, or the best treatment options. When we do particularly randomized clinical trials, we’re comparing and new or a different sort of treatment that we think might be better than the standard treatment to what might be considered the best standard care.  That standard of care is agreed on by all of the clinicians who take part in the study in the group and who are members of the group.  You can be certain that you’re getting the best treatments that you would be offered outside of the clinical trial, as well.  Plus, the fact that you also often have slightly more frequent monitoring visits and follow-up because we wanted to see and track how you are performing or how the trials are going, the treatments that we’re looking at and how the trials are going.  You have regular contact with your clinician and the research team that help to support them in the hospital, as well. You get a bit team as part of your care, in addition to the cancer doctors who would normally be looking after you.  They’re two kinds of things that are important to understand.  I guess the other thing is that there are lots of headlines and news about miracle breakthroughs and cures for cancers and things like that that we see, often, they’re headlines that are based on headlines before we’ve even tried some of these treatments in people. Actually, the time that it takes for us to do a clinical trial and demonstrate the impact on the cancer developmental growth and then even later on, people’s long-term survival outcomes are things that usually take years for us to be able to do.  Sometimes we may not have the answer to from a clinical trial or three or five or ten or even fifteen years after it starts.  It’s a really long-term investment on the part of the clinicians and the health professionals and the patients, as well, in terms of making sure that we get all of that relevant data. Joe:                 Haryana, that makes so much sense.  Do you know what?  It also makes me think about making decisions, whether deciding whether the clinical trial is the right way for you, or just deciding that you’re in different types of treatment.  It’s such a critical time for any patient when you have to make choices about things that you don’t necessarily understand.  What advice do you have on that front? Haryana:         I think the really important thing is to try and think about the questions that you have and what’s important for you.  It’s really valuable when you’re talking to the health professionals that will help you make these decisions and to walk you through that information.  That you understand the things that are important to you.  Is it really important to you that you don’t have to come back to the hospital very often?  Or is it important that you don’t need to disrupt your working environment or that you can continue to drive as you normally would, all of those sorts of things.  The things that are valuable to your lifestyle and your way of living.  Try and be as clear as you can about that. Also, then to think about the questions that you might have about the treatments and what those options are.  There are some really useful tools that you might like to look up.  There are a series of question prompt lists for cancer patients who are talking to their surgeon or to a medical or radiation oncologist, as well as some form of palliative care.  These little brochures which are available from the Cancer Institute of New South Wales website, are called question prompt lists and you can download those. They’re just an A4 sheet, so they’re divided across some panels.  They have a whole series of questions which might just prompt you to think about things differently.  You can go along and tick off the questions that you might have that you would like to ask your clinicians.  It just can help you remember that you need to ask when you’re going into those consultations, because once they get started, it can be really challenging to remember the things that you wanted to ask about and say that it’s quite helpful to have those sorts of questions there. What that can also do is really focus the conversation that you’re having with your doctor on the things that are really important to you.  Sometimes they have a tendency to run off their spiel about different treatments and what the options are.  That can take up a little bit of the conversation time, but if you can use your questions to direct them to the areas that you’re most interested in knowing about, then I think that can actually be really useful for you and for them, as well. Joe:                 Yes, that’s such a great, point, Haryana.  It also gives you an opportunity to write down answers, because one thing I know from personal experience is that quite often the minute you walk out of a specialist appointment, you have no idea what just happened. Haryana:         That’s right. Joe:                 You have nothing to refer back to, right? Haryana:         Yes.  I think that’s another really interesting point.  Taking notes, having someone else with you who might take notes, as well, is really important and can be quite helpful.  The other thing that you could consider doing is asking if they’re comfortable with you audio recording the consultation.  There was some work that was done in Australia, maybe about 15 years ago now, but it really showed that audio recording those conversations was helpful for patients and it helped them to actually retain information and they could share that with their family and their friends if they wished to, or their general practitioner, to talk through it.  It was a way of providing information directly from the doctor in that way, explaining it in that and allowing them to review it multiple times if they wanted to and have it as a reference.  That was actually really useful for patients.  It meant that they spent less time calling their doctors and the hospital back trying to clarify things, as well.  I would really encourage people to start asking their clinicians to do that and see how that goes with them. Joe:                 Yes, thanks, Haryana.  That’s such a great point because it’s also so easy to do, right, because we all have, even with our mobile phone with us, you can just turn on the recording and you can just listen back to it later.  Yes, check out any information that you might have missed, or then follow-up with actual specific targeted questions, as well. Haryana:         Yes, absolutely.  I think it’s really helpful for all of those things. Joe:                 Cool.  There’s a lot of waiting and uncertainty that comes with cancer because you’re constantly needing tests, results, visits to the hospital or the specialist.  What do you think are some of the ways to deal with waiting, with this constant waiting for things to happen? Haryana:         I guess this is really getting to the point where you’re feeling sometimes a little bit out of control and that things you don’t have a lot of say in, when some of these things happen and how long you do have to weight.  I think there probably are some strategies that are helpful.  Actually, the first one, I’d say, is when you’re talking decisions about treatment in particular, while you might feel that you want to make a decision and get moving quite quickly, often there is time to really take a little bit of time to think a little and research what it is that you would like and then really consult with your general practitioner and your family and friends about talking about any concerns that you might have. I think in those initial stages or even when you’re training treatments during the whole journey, then there is time to make some of these decisions.  They don’t have to be made on the spot.  Feeling like you can take that time is important.  The other things, in terms of coping with the waiting time, that’s a really big challenge.  I think there are definitely some ways to do that.  One, I think is, working out what it is that you do to cope normally before your cancer experience.  How do you cope with uncertainty and things because we all have that in our lives and what are the strategies that you do? Did you really find them helpful?  For some people, it may be that they engage in some either moderate or more vigorous physical activity.  They might run or swim or go for bike rides.  Other people, it might be something that is more like yoga or tai-chi, those kinds of activities that can just really help you to expend some of that energy and take you outside of your own head, if you like, and really focus you on doing something else new completely.  That can be really helpful.  Plus, that feeling that you have after you’ve exercised, so those endorphins can also be really helpful in helping you to manage your mood and things like that.  For some people, meditation is very helpful. I think that’s potentially a very useful tool for people to be engaging in.  Others, it might be just being able to share that experience with other people and to talk about the fact that you might be feeling anxious and you might be feeling a bit worried and uncertain about things.  I guess trying to plan times around that where you might make sure that in the lead up to another CT scan or in between waiting for the results that you don’t plan to do anything that is going to add to your stress levels at that time, if it possible.  Maybe you don’t plan big meetings or large family events, if you can avoid then when you’re probably not feeling like being around lots of people in an intense situation. They are some of the practical things that you can do.  Sometimes just having someone else to talk to about these things.  Either a Councillor or a psychologist or pairing up with another person who is having a similar experience or has been through that, so another patient or cancer survivor, who really understands what it’s like to be sitting with that uncertainty and to be quite helpful.  That’s one of the things that people describe a lot, is that people who’ve not had a direct personal experience of cancer find it very challenging to find what it’s like for patients. Joe:                 That’s great advice.  I really like the point that you made about going back to what worked for you before in a time of stress and uncertainty.  I think most of us just look up and go, this is such a radically new experience that you don’t think of, well, what actually works for me?  What can help me to deal with it that I’ve already done before.  I think that was a great point. Haryana:         Yes, because we all come to different life experience and including that cancer experience with a whole lot of skills that we already have and that we use.  I think sometimes it’s easy to forget that you’ve got those. Joe:                 Yes, and with a whole lot of baggage, as well. Haryana:         That’s true, too, yes. Joe:                 Haryana, I know you’ve done a lot of work around sleep and how that affects people both during treatment and beyond.  What can someone do to sleep better as they’re going through cancer? Haryana:         Yes, I guess this is something that’s always useful to reflect if you’re starting to have sleep problems, or you’re feeling that’s an issue for you.  That reflecting on what your sleep was like before the cancer, as well.  There are a lot of people in the general community who have very disturbed sleep.  This may be something that is a much more glaring problem for you and the cancer has just kicked it off again, if you like.  I think understanding that is really helpful.  If it does seem to be something that is related, that has really started to emerge just around the cancer diagnosis or during the treatment, then there are some things that can be quite helpful. The main approach for managing significant sleep disturbances, that’s known to be effective, is actually cognitive behaviour therapy.  This is really training you to rethink and reframe the way that you manage your sleep patterns and your expectations around that.  It can actually help you to change your sleep quite substantially.  Part of that is actually what we call sleep hygiene.  We talk about this idea of healthy and unhealthy, or unhygienic sleep.  The unhygienic sleep would be sorts of behaviours that people can sometimes get caught up in, using alcohol to moderate their sleep patterns to help them get to sleep. That probably means that they’re going to be waking up during the night and using tobacco or eating a lot before going to bed, those kinds of things.  The expectation that you actually sleep for eight hours straight is a common perception in the community.  We know that people have quite variable patterns around how long they sleep for at any given time.  The expectations can be quite important.  Once people start to get a little bit disturbed in their sleep, they can’t really describe it, they’re lying in bed for hours on end and watching the clock, sleeping in to make up for not falling asleep on time.  Particularly, if they’re not waking up refreshed, those kinds of things. What’s really important is that we try and keep a fairly consistent pattern in sleep, so going to bed at a similar time.  If you’re lying in bed and you’re just not going to sleep, then probably laying there and waiting for sleep to come is not the best thing.  Giving yourself a time limit and saying, if I’m not asleep by this time, then I’ll get up and do something else.  Probably make sure that’s not using your computer, television, or using your iPhone or something like that.  The light from all of those things will continue to disturb you.  I think it’s a matter of just planning that and seeing what you can do.  Then if those problem persist, then actually going to see a clinical psychologist who can help you probably within two sessions to actually make some substantial changes in how you’re sleeping is.  I guess the other thing that sometimes happens is, particularly during when you’re in hospital and having treatments, then the sleep does become disturbed because of the environment that you’re in, hospitals are not great places to sleep. Which is a little bit crazy, given that’s what most people need to do, but you’re often being woken up during the night and not getting it.  Any of these sorts of things can start to put you into a poorer sleep pattern, that can then over time become compounded and you just end up with unhealthy sleep habits.  That’s partly what we’re trying to change in the interventions.  The other thing that we find is that sometimes the kinds of supportive care treatments that you might be taking while you’re going through chemotherapy and other treatments, might actually also impact on your sleep patterns. Sometimes they might make you feel very stimulated for a few days, so you don’t sleep very well, then those medications taper off after your treatment and you crash.  You’re going through this burn and bust cycle of energy levels that are really associated with the supportive care treatments that you might be taking.  I think there are those aspect of it, as well, and maybe talking to – if you’re finding that’s the case – maybe talking to your treatment team about whether you need to take such high doses of some of these things or for some of the duration, it might actually help to manage some of those symptoms a little bit better, as well. The other thing I was going to say, is that lots of people think that it’s perfectly normal to have a sleep disturbance around the time of a cancer diagnosis and treatment, so they don’t tell anyone else.  It’s probably important if this is what you’re experiencing, and it is worth talking to someone about it, so that they’re at least aware and can maybe think about some things to change. Joe:                 Yes, that’s a great point.  I guess, also, we don’t think that maybe it is worse to go and see someone like a clinical psychologist, like you said, who’s a trained professional who can help guide you through some of those psychological and emotionally challenges that go hand-in-hand with cancer.  In terms of this, this plays into this whole emotional and mental support that people have, do you think that people get the support that they need from their family and from their friends? Haryana:         I think it’s incredibly variable.  Like, in lots of things, people have different connections and different relationships.  Some of those can be more or less supporting.  Particularly when you may have had a specific role in your family, where you might be the person that does the supporting most and your family and friends may not be really sure how to support you because they’re not used to doing that.  That’s not been their role in your relationship, so that can be quite challenging sometimes. Yes, as I said, I think it’s incredibly variable and there are many people who certainly describe their family and their friends don’t really understand what it’s like for them.  They’re supportive and they’re helpful but actually, really understanding the fear that they’re living with, or the concerns that they have.  It’s not quite the same thing that they find when they talk to other people who have had a cancer diagnosis and can really share that experience in a different way. Joe:                 That is so true, Haryana.  It also makes me think of the partners and the caregivers who support people through cancer, because they’re quite often also get overlooked because the focus is on the person who’s going through cancer.  It’s also incredibly difficult when you’re trying to maintain some semblance of a normal life, as well.  What do you think?  How can you find that balance between having the normal life you want and also supporting someone you care about through the crazy cancer adventure? Haryana:         I think it’s a real challenge, particularly in those periods of acute treatment or for people who have advanced cancer.  I think, again, it’s remembering that cancer is just one part of your life, it might be really big and an important part of your life, but it’s not everything.  Trying to remember the relationships that you had and the connections and the things that you liked to do as either an individual or a couple or a family, then they’re the sorts of things that are worth trying to maintain some connection to those activities. I think for particularly caregivers and partners of patients, there’s a really big change because they do sometimes transition from being equal partners in a relationship, to being a person who’s caring for the other and being much more submissive and feeling responsible for the decision-making and maintaining their life and their lifestyle.  That can be really challenging.  I think recognising sometimes that that creates shifts and conflicts and maybe that there is a need for both the caregiver and the patient to engage in talking with a Councillor or a support person who is outside, who can give them some independent reflection on what’s happening and a space to talk about those things.  Also, for the caregiver sometimes, to feel that it’s okay for them to talk to someone on your own, as well, to get the additional support that they might need, and talk about their own fears and experiences.  They spend a lot of time and so, protecting the person that they’re caring for from their own worries and not wanting to burden them with that. Finding a way, whether it’s through a support group or a caregiver’s support group, be it Cancer Council’s helpline is a really good useful place to try and seek some of those, or access some of those resources because they’re really often telephone-based supports and that kind of thing.  It can be quite helpful to do them and not contingent on them having to go to appointments, albeit, somewhere it, at particular times. Joe:                 Yes, that’s such a great point, Haryana.  Yes, you’re so right, the dynamic of the relationship can change, maybe even just for a period of time.  It’s really important to, yes, try to find the balance back again.  Tell me, what happens when you actually call up the Cancer Council support line?  I’ve never done it.  To be honest, I don’t really know anyone who has done it.  I think it’s such a… Haryana:         It’s such an untapped resource, it’s fantastic.  The helpline… I’m just trying to remember it.  I think it’s: 13-20-11, I think is the number.  That’s Australia-wide.  Basically, you go through to – your calls are answered by people who are trained.  They’re usually counsellors or health people who have a health professional background.  They can actually talk to you about what the needs are that you might be experiencing at the moment.  To provide you some information about what’s possible.  The initial phone call that you make is really about finding out what you need and then working out where to refer you. They don’t necessarily offer counselling support on the phone immediately, but it’s about planning who’s the best person for you to get access to in order to resolve those problems, or to have someone to talk to.  They do telephone-base support groups and can connect you to face-to-face support groups.  Cancer Council also has fantastic supports like a pro-gynae legal team who provide advice about creating wills and how you manage power of attorney and all of those kinds of things.  As well as a pro-bono financial advisory group, as well.  People who will come in to provide advice about having to renegotiate mortgages, to suspend mortgage payments while you’re going through treatment, also to negotiate access to superannuation or those kinds of things, that can be really helpful in relieving the stressors on both patients and their families during that critical period of time.  Those are some of the things that they do.  They also have a lot of online resources, so they can direct you towards those.  Things like the podcast, that has recently been done, which is talking with a series of experts on different topics.  It’s called: The Thing About Cancer. They’re really informative, 20 – 40-minute podcasts talking about different topics and issues.  Interesting perspectives and really focused in great detail on a particular aspect of care.  Because Cancer Council is also right across the country and it has offices in regional areas all over they country, they’re also very aware of what the local services are that are available that might support patients and caregivers.  They can be really helpful in that sense.  They do have some telephone-based counselling, as well, if that’s really what you need, then they can direct you toward that service, particularly if there isn’t something available in your cancer treatment centre and locally to you, as well. Joe:                 Yes, that sounds awesome.  I wish I knew about it when I had to deal with it.  Haryana, let’s just say you go through treatment and everything goes to plan and hopefully cancer is gone and you go through a follow-up regime where you go for check-ups.  I think it’s something that every single cancer survivor has to deal with, is the whole fear of cancer coming back.  What advice do you have on dealing with that? Haryana:         That is a really big challenge.  It’s a problem for many, many people.   The critical question is, well, I think there are probably several things.  One is, we can’t tell you that your cancer will never come back.  I think that’s probably going to be the hardest thing to deal with.  There are strategies that you can use to try and minimize the impact that that has.  When, as psycho-oncology health professionals, we talk about the fear of cancer recurrence.  We talk about it at different levels.  The question is, is your fear of cancer recurrence becoming intrusive, does it make you worry?  Is it on your mind all the time?  Is it stopping you doing things that you would otherwise do because you’re worrying about your cancer coming back?  Does that make sense? Joe:                 Yes, absolutely. Haryana:         Yes, we talk about that as being a higher level of fear of cancer recurrence.  We actually, within our psycho-oncology research group, which is a national clinical trials group, like some of the other groups, that we focus on psycho-social and psychological interventions.  We did do a trial where we developed an intervention.  It was delivered by clinical psychologists who were trained in this particular strategy about dealing with the fear of cancer recurrence.  It did things like looked at what you thought about the cancer and how focused you were on worry, what you understood about your cancer and your prognosis and what the likely trajectory of that was. As well as mindfulness-based meditation to help you manage the worries that you might have.  There were a whole range of strategies that were thought to people, as part of this intervention.  What we did show was that it was very effective in reducing people’s fear of cancer recurrence and keeping that at a lower level over a six to twelve-month period.  It was a five/six-week intervention that people did.  It actually helped them to reduce their worry long-term in that first year or so after they had done the intervention.  We know that if you have very high levels of fear of recurrence, they are some of the things that can actually really help. I guess one of the challenges is that we still know that lots of people are really worried about accessing psychological support and care.  That they would say, that when you suggest it, they might want to see a psychologist or a counsellor, that they’re not mad or they’re not crazy, so they don’t need that help.  I guess one of the key messages that is really important for people to understand is that psychology is actually about strategies to help you cope a lot of the times.  It’s to work out what skills you’ve already got in your toolkit and seeing what we can add to that, as well, that might help you cope with that better. Often, we get people who are experiencing high levels of stress and distress, but they’re certainly not necessarily clinical diagnosed with either a psychiatric illness or something like that.  Just when someone says to you, “Have a chat to the psychologist or the psycho-social team”, it’s really about the extra support and extra tools to help you in your day-to-day life. Joe:                 Cool.  That makes so much sense, Haryana.  What are some of your personal best tips for just having the life that you want after cancer? Haryana:         I think it’s thinking about where you are now and where you’d like to go, the kinds of activity and function that you’d like to get back to.  Actually, seeking out the support that you need to do that.  We’ve already talked about the fact that you have your diagnosis and you go through your treatment.  Then, hopefully, everything’s fine and you’re just having your follow-up, to make sure that the cancer hasn’t come back and monitor those sorts of things.  Often, the treatments that you’ve had will have quite substantial impacts on your physical function and certainly your ability to get back to day-to-day life.  People talk about this idea of the new normal as being adjusting to the changes, both physically and emotionally and mentally after a cancer diagnosis and treatment.  I think the critical thing is that the new normal is something that takes a while to work out and it doesn’t mean that things are going to be the same as they are now.  You might come out of your treatment, but you’ll actually change again with what other things are happening. Finding out, working out what’s the thing that’s most problematic for you at the moment and talking to people about where you can get help for that.  For some people, it might be needing to get back on a better nutritional track.  Some people when they’re going through treatment, will change their diet or they’ll find that they can’t eat properly, or they find that they can’t eat properly, or they’re not interested in food because of the changes or taste and things like that.  Actually, working with the dietitian or a nutritionist might be quite helpful to do some of those things and get a good dietary intake and a healthy diet.  For other people, it might be trying to get back to exercise. Actually, accessing an exercise physiologist who can work out what your level of physical function is now and gradually work up the program with you, that will help you to increase your physical activity, so you can do all of those sorts of things.  I think that’s my key message, is really just thinking about the challenges for you at this particular time, and what’s actually going to help you to overcome those challenges, so that you can live the life that you want to life and that will bring you a lot of pleasure and quality of life Joe:                 Yes, thank you, Haryana.  That’s such great advice.  Thanks so much for your time, Haryana.  I really appreciate it. Haryana:         No problem at all.  Thank you.  It’s been fun talking to you.

Having cancer blow up in your face is never easy, but it’s especially tough when you are only just beginning to make your way through life as a teenager or a young adult. Michael has been through cancer himself and he and went on to become a psychologist helping thousands of young people to deal with cancer.  He’s also built this incredible support system through CanTeen, an organisation that helps so many young people to deal with caner emotionally and socially.  Michael is simply an amazing person and a brilliant mind! Here are some things we cover today: 4 key developmental tasks teenagers struggle with the most during cancer Why peer support group is crucial during cancer 3 key factors that enable us to deal better with cancer Key approach to build resilience for young adults How to deal with uncertainty and much, much more! Links CanTeen Dr Michael Carr-Gregg The Grief Book Good Thinking: A Teenager’s Guide to Managing Stress and Emotion Using CBT Change your Thinking by Sarah Edelman moodgym – Online self-help for depression and anxiety This Way Up MindSpot Episode 026: Stand Up For Your Rights Episode 033: Your Sexuality and Intimacy Through Cancer Full Transcript Joe:                 Michael, so how did you first come across cancer? Michael:          I was diagnosed with a garrotted tumour in my neck when I was 18 years of age.  I was basically told that once the diagnosis had been made that there was very little hope, that I had about three months to live. Joe:                 Wow. Michael:          That’s how I came across cancer. Joe:                 That’s shocking.  What happened next? Michael:          I was given a choice of having palliative care or I could have lots of head and neck radiotherapy, but it was explained to me because this was the mid-70s, that the amount of radiotherapy that they would have to use to kill the tumour would kill a lot of the tissue around it.  There was no guarantee that I would survive the treatment, but I elected to have the treatment.  It was pretty horrible, I didn’t enjoy it very much, but I’m here, so it was a good decision. Joe:                 That changed the course of your life? Michael:          It certainly did, certainly did.  When I was in hospital, I read a book which changed my life.  It was a book called: The Private Worlds of Dying Children.  It was a book by a medical anthropologist called Myra Bluebond-Langer.  Very strange name.  What she’d done is, in the 70s, she’d gone into a children’s leukaemia ward and she just stayed there for a year talking to the children, just playing with them. She discovered so much interesting stuff.  The thing that really struck me is that even the policy on this children’s leukaemia ward was not to tell them that they were dying, they all knew anyway, but they also knew that they had to keep that knowledge from their mothers and fathers.  Myra called this the mutual pre-tense syndrome.  I just became fascinated by the whole area of psychology, cancer, and what later became as psychosocial oncology. Joe:                 Yes, that’s really amazing, Michael, and you started CanTeen, which was the first support group for teenagers and children around cancer, which is absolutely amazing.  How did that come about? Michael:          I wrote my PhD at the University of New South Wales on adolescents with cancer.  I didn’t stay for one year, I stayed for four years on the ward, just talking to the kids as they lived and died.  I discovered that the doctors back then assumed that if they made the young people’s bodies resilient to the disease that their minds would follow.  In fact, it didn’t work that way at all.  Many of the kids had significant psychological problems in addition to battling cancer. It struck me, and this is what my PhD said, that we need to look after their minds, as well.  This was, I think I finished in 84’, and the beginnings of psychosocial psychology had just started.  I published four or five articles in the medical journal of Australia, highlighting the developmental needs of teenagers with cancer.  The logical thing at the end of the PhD was the start a support group.  I’ve had a lot of help doing that, but it’s still the most important thing I’ve ever done in my life.  It was just a great opportunity and I took it. Joe:                 Yes, fantastic and good on you.  Thank you so much for doing that.  What are some of the things you’ve discovered that help young adults and kids, help to deal with it mentally and socially and emotionally? Michael:          What they needed was I think education, information, and support.  What I discovered was that there were four key developmental tasks that these kids had trouble with.  One was emancipation from adults, because they were sick, many of them were immunosuppressed.  They weren’t allowed to be normal teenagers and they’d felt that very keenly, they’d felt like they were put in a cage and someone had thrown away the key.  Instead of being able to spread their wings and fly like most adolescents, because they were sick, their parents were very overprotective and, in many instances, physically, they couldn’t go out because they would just get infections. The second task that they had difficulty with was identity of formation, just knowing who they were, because what was hanging over their heads the whole time was, well, maybe I won’t be at all.  Maybe I’ll die.  That was pretty hard.  It was like the Sword of Damocles hanging over their head every second of the day.  How can I figure out who I am if I might not be here tomorrow?  The third task was one of making friends, many of them were highly stigmatised by their friends.  They weren’t at school, so they missed out on that socialisation.  Even when they were home, quite often, their friends weren’t allowed to come around because of their immunosuppression. That’s a key developmental task.  The last task, which I think was one of the most important ones was going to school, and many of them weren’t able to do that either.  Back then, the schools weren’t that great about sending work home.  Four of the most important developmental tasks of these young people were severely compromised by their diagnosis and the treatment. Joe:                 Wow, that’s so shocking.  Being linked in together in a support group, how did that help? Michael:          The most important thing you have to understand about adolescents is that no other time in their life is there desire to be with their age mates so strong.  I felt very keenly when I was 18, that I was completely abandoned by my friends, they’d all thought that I was dying.  I had a few exceptions but not many.  I felt very lonely.  Driven by that personal experience, I thought, if we actually created an artificial peer group, where the kids could actually just get together and the one thing they had in common was that they were either brothers or sisters, or people living with cancer. That this would be a community and they wouldn’t care what other people said of them.  That’s exactly what happened.  We started doing outings.  Then the outings became camps, then the camps became excursions.  It took on a life of its own.  You look at Canteen now, it’s amazing, that same formula still works 33 years later, still working. Joe:                 It’s unbelievable, isn’t it?  Cancer diagnosis in itself, it’s just such an incredible turning point for someone in their life.  How can someone, especially a young person, deal with it in a better way? Michael:          I think it boils down to resilience and what I discovered in my PhD is that there are some kids that were naturally resilient and some people who weren’t.  The people who weren’t didn’t do it very well.  Many of them, in fact, I think died, developed really significant psychological morbidity and were really impaired for a long time by their diagnosis.  The resilient kids had a couple of things in common.  One, they all seemed to have a charismatic adult in their life.  One person, one adult person that they’d latched onto that made them feel safe and valued and really listened to their concerns. The second thing that they had was, they had really good social and emotionally competencies, so before they were sick, they’d developed good problem-solving, decision-making, conflict resolution, anger management.  They were pretty much the psychological package before they became ill.  They drew on those social and emotional competencies to manage the stressors that were thrown at them.  The third thing that they had was really good self-talk.  They would tend to see life as it was, but they’d always try to focus on the good bits. They would literally be able to, if they couldn’t change something that was happening to them, they’d change the way they thought about it.  Really clever, good resilient self-talk.  They also generally had something to occupy themselves, something that they were really good at.  It might have been art, music, dance, drama, sport.  The last thing they had was spirituality.  They all had a sense of meaning, purpose, and belonging.  Every single one of the kids that did well had not necessarily religion, although some did. Many of them just had a sense of connectedness or relatedness to some thing or someone that transcended the material world.  This combination of factors seemed to make them really resilient.  If I were to capsulate it, I think that these kids were naturally pretty generous, they had really good empathy for other people, and they were quite mindful.  That was really the key characteristics for those kids who did well. Joe:                 Is there any way to build on your resilience? Michael:          All of those skills can be taught.  Obviously, at CanTeen, we try and do that.  As a clinician working with young people who are going through all sorts of difficult situations, that’s your aim, is to build resilience.  It’s much easier to build strong, young people, than repair broken ones. Joe:                 What do you think are the key characteristics to do that?  What are some of the techniques that someone could apply as a young person to become more resilient and to build a stronger… Michael:          To practice mindfulness on a regular basis.  There are now apps like Smiling Mind, which can teach you how to do that.  To literally make a determination to be as generous and as kind and as empathic to all the people around you as possible, because we are hard-wired to do nice things for other people.  We benefit from it, not just the people we’re being kind to.  I think CanTeen gives young people the opportunity to reach out, touch, help those other people that are going through what they’re going through.  I think that’s really important.  The other thing is to find meaning and purpose in what’s happening to you. I guess the greatest thing that ever happened to me was being diagnosed with cancer because it completely and utterly changed my life.  Prior to that, I think I was a spoiled brat.  My parents were diplomats, we travelled around the world, were driven around in limousines, we lived in beautiful mansions, we had servants picking up after us.  It was just an amazing life, but this brought you down to earth because it doesn’t matter who you are, cancer doesn’t discriminate. Joe:                 Yes, that really makes things real.  Michael, when you’re dealing with treatment and it’s so overwhelming, as you’ve experienced, and you’ve spoken to so many others, is there anything that can help you to get through this whole craziness and uncertainty of dealing with it?  What advice do you have on that front? Michael:          The same answer as I’ve just given you.  I think treatment is incredibly stressful.  There’s nothing good to be said about it.  I remember as if it was yesterday, lying under a linear accelerator machine, knowing that for the next two days, you’d have terrible pain, nausea, vomiting, and that this was all supposed to be good for you.  I think that having someone that you can talk to about your thoughts and feelings, who’s not going to be judging, very important.  Secondly, having that capacity to one out, to do the mindfulness. Terribly important.  To find ways of coping with those moments.  That might be through music.  I was very prone of listen to music.  It seemed to soothe me.  It doesn’t work for everybody, but it really changed my moods a lot.  You don’t feel like eating, so you basically can do as much – I actually found communing with nature, being outdoors very important.  My parents actually bought me a house to die in, in the Marlborough Sounds of New Zealand.  A little place called Motabu Bay. I remember after the really horrible treatment time, I’d go down there, and I’d just wander and look at it.  It has to be one of the most beautiful parts of the world.  I don’t know if you’ve ever seen Marlborough Sounds, Google it, it’s gorgeous.  That’s another thing that really helped me deal particularly well with the horrible treatment. Joe:                 Wow, that’s incredible.  Michael.  How do you – it might be a weird question – but how do you know that you need help?  How do you know that you’re struggling mentally with cancer?  It is cancer, it’s supposed to be hard. Michael:          I think that many young people going through treatment, feel miserable most of the day, most of the time.  They can often be bombarded by thoughts of death, dying, loss, grief.  You can basically lose a lot of hope.  You can feel helpless, hopeless, worthless, and you want to withdraw, you don’t want to talk to anyone.  You can get quite irritable and angry.  Probably not that much fun to be around, to be honest with you. I think those are the big signs that life isn’t going well.  If I had to summarise it, you develop a negative view of yourself, a negative view of your environment, that’s the people, your family, friends, school, work.  Worse, you develop a negative view of the future.  If you have that, I call it the negative triad of cancer.  It’s not good.  That’s when you really need help.  You need to come and speak to someone like me. Joe:                 Yes, absolutely.  Michael, let me talk about depression and anxiety during cancer.  How does that relate to the pressure and anxiety outside of cancer? Michael:          Exactly the same.  There’s no difference.  I think that it’s regarded by psychologists by more reactive depression.  It’s in response to an event or we call it an adjustment disorder.  Essentially, it has all the characteristics of depression, it’s just related to the fact that you’re going through a really terrible time.  It’s not sadness, sadness lasts minutes, hours, or days, this is a pervasive and relentless sense of despair that goes for a long time and is much deeper than sadness. Joe:                 Yes.  Well, absolutely, it’s obviously incredibly tough to deal with in terms of friendships and relationships that are tested, because on one level, you don’t know what to say to people and you don’t want to be a burden and you don’t want to look stupid and weak.  At the same time, I guess other people, they don’t really know what to say either because they don’t want to say the wrong thing or do the wrong thing.  What advice do you have on that front? Michael:          My experience was that people didn’t know what to say, so they ended up saying really stupid things like, “I know how you feel.” Or avoiding your completely.  I think the best thing you can say is, I’m here for you, I’m interested in helping in any way I can.  I recognise that at times you’re not going to want to talk, but when you do, I’m here.  I think that constantly holding out almost a psychological olive branch to a person, saying, “Look, I know you don’t want to speak at the moment, but when you do, I’m here” over and over again.  Be a broken record because there’ll come a time when they will want to talk.  If you just continue to be there for them, that’ll happen. Joe:                 Yes, that’s fantastic advice.  One of the other things about cancer is you’re constantly in between things.  You’re in between appointments and treatment and waiting for test results, what do you think someone can do to deal better with this whole uncertainty that comes with cancer? Michael:          I think that for my money, my philosophy for those young people is, if in life you can’t change something, the thing that separates us from all the other creatures on the planet is that we, and we alone, can change the way you think about it.  If you dwell on the uncertainty, if you ruminate about it.  That’s like a psychological cancer, it will eat you up.  The most important thing is not to do that, to consciously focus on the other parts of your life that are going well. That takes quite a lot of psychological strength, it takes a lot of help and support, but I’ve found that not only with all the members of CanTeen that I’ve worked with, but all my clients now who are suffering, it works.  You can actually train them to be resilient.  It’s a fundamental tenant of cognitive therapy, that your thoughts influence your feelings, which influence your behaviour.  You’ve got to start with the thoughts.  You’ve got to change your thinking. Joe:                 Wow.  When you survived cancer, you’ve obviously the shadow still hanging over you because you’re still going for check-ups.  You’re afraid of cancer coming back, how do you deal with it?  How do you cope with the fear of cancer coming back? Michael:          I stopped going to my check-up appointments because I found them too harrowing.  It was like there’s this syndrome called the Cleopatra Syndrome.  Have you ever heard of that? Joe:                 No. Michael:          Queen of denial.  You just deny everything that is happening.  My coping mechanism after a couple of years was just to think, well, if it comes back, it’s come back.  I’m not going to put my life on hold.  I’m not going to spend hours waiting around for results and I had just decided that I was going to get on with my life.  That’s what I did.  CanTeen, of course, provides you with lots of things to do when you’re starting an organisation.  I think that was a good distraction for me. Joe:                 Is that when you started? Michael:          No, what you have to understand is that you go through this period of time.  For me, immediately post the radiation therapy, I actually had to do university.  I had to sit exams, so that was a big distraction.  That worked very well for me.  Then I did my master’s thesis on children with cancer in Wellington Hospital in New Zealand.  Then I moved to Australia, did my PhD.  All of it was one long, big working through what had happened to me.  I used my academic studies to process what had happened to me psychologically.  Does that make sense? Joe:                 Yes, absolutely. Michael:          Still had anxiety, still had a little bit of depression, maybe even a little bit of PTSD.  I remember feeling that I needed to get back into life.  I never had the same amount of energy, radiotherapy takes that away from you.  I couldn’t keep up, I didn’t have the stamina that my friends had.  You adjust.  That’s what I did.  Then when I finished the PhD, it all came together.  I was sitting in the bath one night and I thought, “CanTeen, that’s what I need to do.” It was overnight the whole concept gelled, and I just made it happen.  I had lots of people to help me but that’s how it worked. Joe:                 Yes, that’s amazing, Michael, and it’s something obviously finding that new purpose has given you an ability to deal with this whole thing in a completely different way. Michael:          If you go back to my resilience model, the last part was, finding meaning in what happened to you.  I think that’s what I did.  I didn’t know enough to do it straight away.  That’s why I did the masters thesis and the PhD because I read everything that anybody had ever written on this whole thing to try and understand it, on an intellectual level.  I dealt with a lot of the emotional stuff by intellectualising it.  That was beneficial.  I think it made me a better clinician. Joe:                 Yes, absolutely.  Is this what you would recommend to other people, as well, going through cancer or after cancer, to find a new purpose, something that really gets your energised, something that gives you direction and new meaning? Michael:          I think that’s one way of coping.  It’s not for everybody.  Certainly, it worked for me and it works for many of the kids with cancer.  I think about the literally, now, hundreds of kids who have survived and who were within CanTeen.  Obviously, you develop relationship with these people.  Many of them have done amazing things.  Won gold medals at the Paralympics.  Kids who got one leg.  Amazing stuff.  Everybody does it in their own way.  One of my friends wrote a book called: The Grief Book.  She used her experience as a survivor to understand grief and to help other people work through their grief. She wrote this little book.  It’s available through Black Dog Books, which is a little book company in Australia.  It’s got a hundred different ways for young people to deal with their grief.   Do you see what she did?  She used her own experience and she found something out of that, which was going to leave a remarkable legacy and her name was Elizabeth Vercoe.  She did a great job.  There are a thousand different ways people find meaning and purpose.  That’s two. Joe:                 Yes, fantastic, Michael.  What are some of the best resources that you would recommend for someone to deal with the mental and the psychological impact of cancer? Michael:          I believe that if you’re a young person, there’s a book, a really good book called: Good Thinking, by a woman called Sarah Edelman.  I think her co-author is Louise Raymond.  I found that book quite simply brilliant, in terms of helping teenagers learn how to think about things differently.  That’s a fantastic resource.  I can’t really go by that.  If you’re a bit older, a young adult, Sarah Edelman’s written a book for adults called: Change your Thinking.  I think that’s very good too.  Those are the two top-end resources.  If you’re a teenager going through it, and you’re not big on books, there’s a website called: moodgym.  I don’t know if you’ve ever heard of it, that helps you think about things differently, as well.  In terms of self-treatment, I think that’s outstanding, really good.  There are a couple of other online programs, This Way Up is one of them.  There’s another one called MindSpot.  We tend to think things now are online because the whole world is online.  The resources can be found online.  Those are the best I can think of. Joe:                 Cool.  Fantastic.  Thank you so much, Michael.  It’s incredible. Michael:          Good. Joe:                 Thank you for all the stuff you’ve done with CanTeen, it’s mind-blowing. Michael:          It was the young people who did it.  They were really good.  

Isn’t it true that cancer brings home the reality that you’re not forever and so you ask yourself, what happens if I die?  Have I been the person that I’ve always wanted to be? How are people going to remember me?   Joseph answers these huge existential questions every single day. He’s a rabbi who does some unbelievable work in a hospice helping people who are facing cancer to bring out life and make peace with it. Here are some things we cover today: Universal questions about life and death Surprising path to forgiveness What happens after we die (according to Judaism) The right way to say sorry (and why we mess it up) How to reconcile heritage and modern life Why every new day is a second chance and much, much more! Links Never Long Enough by Rabbi Joseph Krakoff The Jewish Hospice and Chaplaincy Network Episode 011: Who Is Going To Stay With You Through Cancer Full Transcript Joe:                 Joseph, I’ve just read up on all the incredible work that you’re doing in the hospice, how did you get started? Joseph:            I was a congregational rabbi for about 16 years.  I found in the course of doing that work that I was spending a lot of that time in end-of-life care.  I was really drawn to the people that were so much in need.  There was a lot of vulnerability to that end-stage time period, end stage illness, both from the patient’s perspective as well as the family’s perspective.  I’ve really spent a lot of time in the hospital holding people’s hands, just really helping them reconcile relationships that they wanted to reconcile before they died. After 16 years of doing this over and over again and really feeling like I was making a meaningful impact, I decided to do this full-time.  In the summer of 2014, I joined the Jewish Hospice and Chaplaincy Network here in Detroit.  The work that I do every single day, we manage almost 200 patients a day that are facing end-of-life illness.  Some in Hospice care, some not yet in Hospice care, some in palliative care. Treating them, their pain and their symptoms, getting them all aspects of help from social work care, to spiritual care, which is what I do, to bringing the music and art and all kinds of different enrichments that will uplift their dignity. Joe:                 Joseph, that’s so fantastic.  I don’t have words to describe it.  Cancer is such a really tough time for someone, you’re confronted with so many things, you’re confronted with ultimate questions about life and death and your place in the world.  I guess do any themes come up over and over that you see it for yourself? Joseph:            Yes, a lot of times, I think a common theme, a common thread, is people are really reflective about the life that they lived, the values that they lived.  If they have children or not even children, but family members, nieces, nephews, do they pass those values onto their loved ones?  That’s a big piece in terms of values and did they live their values?  That’s number one theme.  Another theme is the reconciliation of relationships.  Are there relationships that need to be reconciles or at least an attempt at reconciliation before they leave this world, so that they can leave this world with a sense of purity of mind and spirt and soul?  It’s also a time for honesty too. A lot of times, what I find is family members don’t want to admit that their loved one is dying because of course, it’s very hard to deal with emotionally, psychologically.  What I find is that more often than not, a person that’s dying wants to be honest about it, so that they have a chance to say goodbye.  Giving that person an opportunity to say goodbye, together their family, together their friends, together to say goodbye is really an important meaningful ritual I think that transcends religion, I think it’s part of the human spirit. A lot of people die suddenly and don’t have the opportunity to say goodbye.  If you have an extended illness, a lot of times, you do have that opportunity.  I think honesty around that is very powerful and is also a theme that I see quite frequently. Joe:                 That’s so profound, Joseph.  You also touched on reconciling relationships.  What advice do you have on that front?  How do you go about doing that? Joseph:            That’s a very a great question with a complicated answer.  What I say is, the best way not to have to worry about reconciling relationships, is not to hold any grudges in the first place. Joe:                 That’s tough. Joseph:            It’s tough, it is tough.  It’s very tough.  People wrong us, and we respond to that.  we feel offended, we get angry.  I think that one of the things, even before end-of-life situations, is if there’s a way to give other people the benefit of the doubt.  Really, to think, they did not mean to offend me, they’re having a bad day, this is not about me, this is about them.  To really live our lives that way where we are not putting ourselves in situations to be abused or mistreated, but to give people the benefit of the doubt.  If they do it again and again and again, then obviously it changes the scope of a situation. The best way not to have to worry about reconciliation at the end of life is to try to maintain those relationships throughout life.  That being said, that’s not always possible.  It’s not always possible to reconcile relationships at the end of life, as well.  There are many families that I’ve dealt with over time and I’m sure will deal with in the future, where family members don’t come to the funeral and don’t have nice things to say. It’s obviously a very sad situation because you want to try to be able to create a sense of peace, a sense of harmony in a relationship.  One of my teachers once said, and I think it’s very true, what you don’t have in life, you don’t have in death.  To the best of our ability, to live our best lives in relationship with one another and to try not to hold grudges, or if there is something that’s bothering us, to deal with it right away.  Ultimately, it will make the end a lot more peaceful. Joe:                 That is so true, Joseph.  I know you also touched on living through your values and being true to yourself.  How do you go about doing that? Joseph:            I think a lot of it is self-awareness.  A lot of it is about how well do we know ourselves?  How well do we know what we stand for?  What we believe in?  Do we live that?  Are they in line with one another?  Each and every day, are we living our best lives?  Are we living the way we want to be living?  If not, why not?  I think that’s just a piece of it, obviously, it’s a lot more complicated than that. Joe:                 Yes, absolutely.  Joseph, many young people have a difficult time reconciling their heritage and modern life, what advice do you have on that front? Joseph:            Well, I think that all world religions have some values and some morals and ethics that speak to people at every age.  Sometimes rituals that I know don’t, but because they feel like, that’s the rituals of yesteryear, those are the rituals that people have been doing for years.  They don’t relate to me.  What I would say, as well, why don’t they relate to you?  Is there a way that you can redefine that ritual or redefine that teaching, so that it speaks to you?  Also, there’s power in doing what our ancestors have done for generations and generations. One of the other things I do as Rabbi, a lot of, is I do a lot of weddings.  While I’m on the end-of-life most of my days, my work days, I do a lot of weddings on Sundays or Saturday nights after the Sabbath is over.  When I meet with the young couple, we talk about some of the ancient rituals that even just around wedding that have been done for generations.  A lot of times, when I explain those rituals and ask them, what do they mean to you? How can they speak to where you’re at in your life?  They really take some time to say, “Do you know what?  I’ve never thought about this.” That can relate to this or maybe the fact that my grandparents or my great-grandparents did this actually has more meaning than I realised.  I think a lot of it is about education. Joe:                 Yes, exactly.  I guess some of those things are obscured by certain experiences in life that don’t really serve us. Joseph:            Absolutely. Joe:                 Yes, fantastic, Joseph.  What does, according to Judaism, what happens after we die? Joseph:            There are a lot of different theories, unfortunately, nobody has really come back to tell us.  I wish that wasn’t the case, but most thinking in Jewish circles centres around our physical body dies and our physical body is buried, ideally in the ground.  When we come into the world – let me step back for one second – when we come into this world, we believe that God puts into a body that’s been born a soul.  While we’re alive, that body and that soul are together.  In the process of getting ill and getting ill toward the end of life, so an end-of-life illness, what’s happening is the body is getting sicker and the soul is pure.  Nothing is happening to the soul.  The soul is what makes us who we are. The way the body is made is that it’s going to wear out.  If you think about death, really death is that our body has at some point been exhausted or let us down or been injured or whatever it is, but it’s our body ultimately that passes.  We believe that in the process of dying and in death, our physical body expires, our soul is released back into the cosmos, back into the universe, our soul lives either in a world of souls for the next stage of that non-bodily existence or that soul can come back into the physical world and go into another body. There are probably souls that have lived in many bodies in the physical world.  There are also souls that live in a world of souls, some go on to be angels, and really that’s at the discretion of god.  We really do believe that this physical world that we live in together is not the end.  It is part of a continuum of life, just different aspects of life. Joe:                 That’s a pretty empowering statement, isn’t it? Joseph:            I think it’s incredibly empowering in a lot of ways.  When I say to family members and they say, “Rabbi, what do we believe?” I lay it out the way I laid it out for you, and I want them to figure it out for themselves in terms of their theology, but what’s powerful, I think most powerful about it is that means that there is the potentiality of seeing loved ones again, of seeing the souls of loved ones again.  To say that we are reunited with those who have gone before and that they just went onto the next world sooner than we did but that it’s not the end.  We do believe also that souls that have been together in one world congregate around one another in other worlds, in other non-physical worlds.  To me, that’s incredibly comforting and I think that to provide comfort, look, if it’s not true, I guess we’ll find that out eventually, but if people are comforted by that belief, I don’t see anything wrong with it. Joe:                 Yes, absolutely.  I couldn’t agree with you more.  Joseph, in terms of if we look at world religion, is there any common ground when it comes to end-of-life and what happens after death? Joseph:            I think the common ground more than anything else, and I’ve done a fair amount of studying of different religions and of lots of friends who are clergy and other faiths.  A lot of it comes along the lines of legacy.  We all want to leave a legacy.  We all want to be remembered.  Nobody wants to be forgotten, everybody wants to be forgotten and for people to believe that their life had value. I think whatever we believe in terms of this life, what we believe about what happens in the future life, I think there’s a common human element that we all feel, which is that we want our lives to have meaning.  We want our family members and our friends to have been inspired by us, to have been touched by us, to have been maybe even changed for the better because of something we said or did along the time.  We want to have an impact, I think that goes literally across all religious lines. Joe:                 Yes, absolutely, Joseph, that is so true.  Also, with cancer, obviously, that’s incredibly impactful on the person who’s potentially facing end-of-life or going through treatment, but it’s also incredibly tough on the caregiver and they don’t really get enough attention, do they? Joseph:            Caregivers, I believe, are god’s angels on earth.  Whether it’s a family caregiver or a private duty hired caregiver, a nurse, a doctor.  We are blessed to have people around us that literally care, care deeply.  Unfortunately, caregiving takes its toll in a serious way on caregivers and really has the potential even to shorten the life of a caregiver, depending on how long, studies show, depending on how long they’re doing this caregiving.  Caregivers definitely they do it out of love, they do it from their heart by in large, some do it out of obligation, as well.  I think caregivers are often overlooked and caregivers really need to be celebrated and appreciated and recognised for the amazing love and care that they provide. Joe:                 Is there anything do you think a caregiver can do to help themselves, because it’s tough on them as well and sometimes I guess they forget to do something for them, too? Joseph:            Yes.  I think if there’s any way for the caregiver to work out a system, whereby, they can get away from a few hours here and there to exercise or to read a book or to do what inspires them.  It can be all-consuming, and it can be all-consuming very quickly.  To pay private caregivers is not an inexpensive venture at all.  Not every situation allows for that, but in an ideal situation, if there can be a team of caregivers so that everybody gets a break, that would be the best situation imaginable. Joe:                 Yes, absolutely.  Joseph, what about someone who’s maybe going through cancer and maybe they don’t have the support that they would like to have in their life from people around them?  What advice do you have on that front? Joseph:            I would Google or go online and look for cancer support groups in their area.  Unfortunately, cancer is rampant, I only pray that there’s a cure in my children’s lifetime.  I know they’re working furiously on trying to find a cure for cancer, but in the interim, I think something like cancer or any kind of illness that is a serious type of terminal type of illness has the capacity to rock your world in a way that you never ever imagined.  Even if you’re feeling good and doing well.  I think life in general is extremely complex and hard to go it alone. Through Synagogues, temples, mosques, community centres, to Google cancer support groups, they’re all over the world now.  I think to try that out and see how that helps or the impact that it can have is something that is important for cancer or for any kind of illness that a support group would be helpful. Joe:                 Yes, that makes so much sense, Joseph.  I know we touched on reconciling relationship.  I want to dig into that.  Sometimes we hurt those people that we love, is there any way to makeup and maybe say sorry? Joseph:            I think that sorry is a very powerful word if used properly.  We all know from kids that their parents tell them to say sorry and they say, “I’m sorry” and they’re not really sorry.  They say it because they want to have dessert or whatever, they don’t want to have their iPhone taken away.  What does it mean really to be sorry?  I think that the Jewish definition of an apology is very powerful because the first thing, of course, you need to do, is you need to recognise what you did wrong, which is hard for a lot of people.  A lot of people don’t want to think about what they did wrong.  We all do wrong.  We all make mistakes.  We’re all fallible.  God didn’t make us perfect.  Only God is perfect, God didn’t make us that way.  We need to recognise that from time to time, we fall short, we make a mistake.  In Judaism, the Hebrew word for sin or making a mistake is Het and Het means literally like in archery, you’re always trying to hit the bullseye, but you don’t always hit the bullseye, sometimes you miss the target. To make a mistake in Judaism is, it’s not catastrophic.  Depending on what it is, obviously, but usually, it’s not catastrophic.  It means that you missed the mark.  In archery, when you miss the mark, what do you do?  You try again.  You try to hit the mark the next time.  We can do that, we have the ability to try again.  Before we try again, we have to go to the person that we offended, the person that we hurt in a humble, sincere, authentic way and say, “Listen, I missed up, I am so incredibly sorry that I hurt you in that way, that was not my intention.” Again, every situation is different, but I’m hoping it was not my intention, you know?  Sometimes it is. Expression that I am really sorry, your relationship, our relationship, our friendship means something to me, and I don’t want to lose it, I don’t want to sacrifice it, can you please forgive me?  That is the process that you through in terms of a sincere apology.  The apology only is valid, the apology only takes affect when you’re in the same situation the next time and you act differently.  You’ve changed your actions, so you don’t make the mistake the second time that you made the first time.  That’s when your apology, even though you’ve apologised, that’s when your apology really is cemented, because you learned from your mistakes. If we could all learn from our mistakes, think about how much better the world would be.  If we would take responsibility for what we do wrong, learn from our mistakes and try to do better next time.  Look, we’re going to mess up somewhere else, but that’s okay, so we learn, and we learn, and we learn, do you know what?  That’s what life is all about.  We should be learning new things about ourselves, about each other every single day. Joe:                 Yes, that’s very powerful, Joseph.  I think that goes back to the earlier theme when you were talking about honesty. Joseph:            Yes, absolutely.  I think about, again, going back to the notion of the couples that I counsel, I do a lot of counselling and as well as the families I deal with too, at the core of every successful relationship is a sense of honesty and the bond of trust.  If there’s honesty and trust at the core of a relationship, that relationship is going to endure. Joe:                 Yes, that’s very profound, Joseph.  I read a really touching quote on Twitter when you were talking to a 100-year-old woman and you asked her, what is the best part of being your age.  She answered, “No more peer pressure.” Joseph:            Yes.  I got a kick out of that, as well.  I’ve heard that before, so I don’t necessarily think that was original, but if you think about it, to live to be 100 is quite an achievement.  The truth of the matter is, those that live to that age often outlive a lot of their friends.  In fact, I was just with a woman recently who has a whole new group of friends 30 years younger than she is because she outlived all of her friends.  Peer pressure, if you think about it, peer pressure causes us to do things that we might not necessarily do.  You’ve got to be careful of peer pressure. Joe:                 Yes, that’s right because you talked about leaving a legacy, but I guess you don’t want to live up to somebody else’s expectations, you want to live up to your own beliefs and your own values and your own expectations in life. Joseph:            Absolutely.  I think you want to be your best self to your values and what matters to you, your moral, ethical approach to life.  The other thing is that I say to people, too, is that in terms of expectations, just in general, that if you lower your expectations, and you don’t hold other people to such a high bar, more often than not, you will be pleasantly surprised.  Sometimes the issues that we get into with one another is because we hold each other to these ridiculously high expectations.  Expectations often have the power to disappoint us, we can be disappointed because people don’t live up to what we think they should be doing.  If we lower expectations, we can be pleasantly surprised and that can also help the relationship. Joe:                 So true, Joseph.  I loved your quote also on Twitter, when you said that no matter how hard we try, we make mistakes.  One of the most liberating teachings in Judaism is that each day, we get a second chance.  What does that mean to you? Joseph:            Well, I think that, again, one of the teachings of Judaism that inspire me and there are a lot that inspire me, but the idea that, again, it’s not about perfection, it’s not about getting it right, like I said before, it’s about learning and growing.  Every day, we should be growing personally, we should be growing emotionally, we should be growing spiritually, growing psychologically, we’re growing physically whether we like it or not, some of us are growing up, some of us are growing out, whatever it is.  It is about growth.  It’s about personal growth.  For the most part, if we make a mistake and we take responsibility for it, we do get a second chance. If you think about it from a biblical perspective, Moses came down with the ten commandments and he saw the people worshiping the golden calf and he broke the tablets, he didn’t have god’s permission to break the tablets.  Thankfully, god gave him a second chance, God allowed him to come back up the mountain and get a second set of tablets.  I think that’s a profound metaphor for we all have the opportunity to get a second chance, to do better, and each new day gives us the opportunity to start again, to start afresh, to do better. Joe:                 Yes, that’s fantastic, Joseph.  Can you please tell us about your book and how did it come about?  How can someone go about finding it? Joseph:            Sure.  As we said at the beginning of our time together, I’ve been drawn toward end-of-life care, one of the things that I did when I was in school as a rabbi, training to be a rabbi is I wrote a poem called: Never Long Enough.  The poem was really a reaction to what I had seen in homes after somebody had died, where a family member or friend, well-meaning, usually it was a well-meaning friend or acquaintance, would go up to the mourner, offer their condolences and then say something like, well, at least you had them for 80 years.  My feeling was, well, I wanted them for 90 years, or I wanted them for 100 years.  What do you mean at least I had them for 80 years? My feeling was that 80 years, okay, that’s great, it’s never long enough, we never want to lose the person that we love.  We never want to say that it was love, that that 80 years was enough, and I didn’t need anymore.  We don’t feel that way, we bond with people and we develop deep relationships with people.  I wrote this poem called: Never Long Enough.  Which is really a reaction to that.  The other things I would hear in a Shiva house is that they’re in a better place.  Some people might believe that.  That’s their choice to believe it.  I don’t want to go in and tell a mourner that the loved one who died is in a better place, because as a mourner, I would say, well, a better place is here with me. I wanted people to be more cognisant and more careful of the things that they say.  They don’t mean to be hurtful, I don’t believe they mean to be hurtful, but we don’t know what to say when somebody’s died.  It leaves us speechless to a certain extent.  Everybody wants to come up with the most brilliant thing to say, so that they can instantly heal the person who is bereft.  There are no brilliant words.  The brilliant words don’t exist.  What exists is, you go in and you hug someone, you hold their hand, you give them a kiss, and you bring them my book.  My book is, not only my book but a book with my co-author, Dr.  Michelle Sider, who’s an amazing artist, who illustrated this poem.  It’s really all about helping people remember their loved ones and realise that everybody is on their own timeline when it comes to mourning. It’s not about it being over in the period of days.  You go to pick up the phone a month later because you used to call your loved one every day.  This is really a book that gives permission to people to mourn at their own pace and to embrace the memory of loved ones.  The book is called: Never Long Enough.  It’s available on Amazon.com and Barnesandnoble.com. Joe:                 Well, that’s incredibly touching and thank you so much, Joseph for your time.  Thank you so much for what you do in the world. Joseph:            Thank you.  Thank you for the opportunity to talk with you today and, again, I appreciate the opportunity to dialogue.  

Cancer sweeps into your life like a hurricane, and you’re not the same person you were before treatment, and sometimes it’s tough to adjust to those changes, and even tougher to open up about it with people you love, with people you care about.  And that’s where we need to talk about sexuality and intimacy and how it works through cancer so today you’re going to hear from Sage who has such an eloquent and down to earth way of working through things, you’re getting the best advice on the planet! Here are some things we cover today: Key distinction between sexuality and intimacy Separating sexuality from image Who is the best person to turn to speak about sex and intimacy Top online resources that can make a huge difference for you and much, much more! Links Sage Bolte Sex and Intimacy (Living Beyond Cancer) Sex and Intimacy After Breast Cancer Diagnosis (Young Survivor Coalition) National LGBT Cancer Network Self-Image and Sexuality (National Cancer Institute) Sex & Intimacy Discussions on Stupid Cancer Community Episode 026: Stand Up For Your Rights Full Transcript Joe:                Sage, it’s such a pleasure to meet you.  Thank you for your time. Sage:              Absolutely.  Thank you for having me.  I appreciate it. Joe:                 Cool, Sage.  I think I really want to start with some definitions about talking about sexuality and intimacy.  Are they the same thing? Sage:               Sexuality and intimacy are not the same thing.  They are two different things, although, they might come together in a sexual and intimate relationship.  Intimacy is really a human need.  It’s about connectivity and desire to be in community or connectedness with someone, to feel safe and trusted in a relationship with someone.  We might be intimate with our best friends.  We might be intimate with our partner, our family, people from our faith communities.  That intimacy, again, is about that connectivity and connection. Where sexuality is really about how we define ourselves and parts of ourselves as humans.  Yes, it might have to do with sexual activity, but really, it is up here in our brain.  How do we define ourselves?  What does sexuality look like?  That might be, again, sexual activity including intercourse, but it might be touching hands, expressing sexual expression.  They can also be strongly influenced by our spiritual backgrounds, our cultural backgrounds and guide us to what we feel comfortable with or not comfortable with.  It might be in some cultures or faith practices, we keep our bodies very hidden or covered because that’s sacred.  That expressing sexual expression would only be within the sanctity of a marriage/relationship that the body or the sexual acts would only be seen by that person. Sexuality is freer that they may feel very comfortable expressing their sexuality more outwardly.  Neither, again, right nor wrong, it’s all very individual.  Sexuality, again, is just really again an individual expression. Joe:                 Yes, Sage, that was beautifully put.  Such a personal and, like you say, a sacred thing.  That it’s not only critical to a relationship if you’re in that, but to also how you see yourself.  I think that cancer can obscure that, so that not only it’s difficult for you to deal with it, but it’s also difficult to acknowledge it as a problem for yourself.  What’s your perspective on that? Sage:               Yes.  I think sometimes that also, that depending on where you live in America, the way sexuality is expressed is probably different and probably in other countries, as well.  As well as the media, right?  The media, at least in America, over sexualises everything.  Things that are sexualised would be things like looking at the breasts or the butt or who has the most rock-solid body gets over sexualised.  When that’s considered sexy or sexual, my goodness, that not only sets up 90 percent of us for failure, but then you add a cancer diagnosis, chemotherapy, and all the things that change our body image. If sexuality is defined by image, it has such a profound impact when you get a cancer diagnosis because for some women, their femininity is attached to their breasts or their hair.  Same with men, maybe it’s attached to their hair or to their physique.  When the steroids are added, they gain 30 pounds in two months.  That can have a tremendous toll on how they view themselves.  On top of the fact that no just the body image changes that occur, but the sexual function issues that occur related to the treatments itself.  For young women, they are thrown into medically induced menopause. Those sexual side-effects can be tremendous and take a huge tole on the way they view their body as well as the way they feel about their body.  The same with men as well.  That they might notice that they’re having a harder time achieving or maintaining an erection or that their libidos change.  They’re not as interested in being sexual.  Maybe that’s because of the treatment itself, maybe it’s because of the side-effects.  Like, fatigue, when you’re really tired, it’s no longer an excuse, “I’m tired or I’m too tired.” It’s an actual thing.  Being tired can influence a person’s, again, sexual connection with themselves, or with a partner or partner. I think when cancer throws in that kink, it isn’t just again the body image piece, sometimes we don’t always think about all those other side-effects.  Like, dry mouth, fatigue, neuropathy, hair loss, weight gain, weight loss, the changes in body related to scars or port scars.  Feed tubes, colostomy bags.  There are so many things that physically affect the body that then can also psychologically affect the body when we start seeing our bodies as not whole, those negative messages.  That certainly then can influence both sexual functions, as well as our sexuality connected to how I view myself as man or woman. Joe:                 Yes, absolutely, Sage, that’s so true.  If you’re diagnosed with cancer and you’re worried about how that’s going to affect your sex life, maybe you’re just beginning treatment, who do you talk to about it?  Do you talk to your oncologist, or your nurse?  What sort of questions should you ask? Sage:               Yes, good question.  It’s a hard question to answer directly, so follow me through my indirect way.  I think where you start is with someone who you trust on the medical team.  That might be a nursing assistant, that might be a social worker.  That might be the nurse or the physician assistant, it might be physician.  I say, start with the person you trust the most and let that person guide you to the next right person, if they’re not the right person.  I would start by just raising, just like we do when they say, “How are you feeling?” If they’re not asking you questions about your sexual health, or if they’re not asking your questions about your relationships, then it probably is on you to bring it up. When they do their typical check-in of, how are you feeling?  Have you noticed any new side-effects?  That’s your opening with that question, to say, “Actually, I’ve had some concerns, I’ve noticed, for example, my libido has changed.  I heard, I listened to this podcast and this woman said that my sexual function might be impacted.  What can I expect?” You can also ask simple questions of, “I understand that my sexual function might be challenged or changed, what are some things I can do about that?” What I want to prepare your listeners for is, it’s not uncommon for a healthcare professional to not have the answers.  That’s’ not because they don’t care, but it’s because we haven’t done a good job educating our healthcare professionals to be able to thoroughly address these questions.  They may say, “I don’t know.” It would be less likely for someone to be more dismissive, like, it doesn’t matter.  That used to be language I would hear more often.  Just focus on now, you don’t have to worry if it will come back later. If you’re provider says that to you, I would suggest you ask for a different provider to talk to.  Not only do you need to feel valid and valued that your relationships and your sexual body is important, but the most proactive you are, the better outcomes you’re going to have. Just like when we say, go exercise during treatment to keep your body strong, the same thing goes for your sexual health.  The more proactive you can be on keeping your sexual body as sound and strong as possible, the better your outcome is going to be when you complete treatment, or if you have advanced disease, the more you’re going to be able to navigate some of those ongoing and continuous changes. Joe:                 Yes, that makes so much sense, Sage.  I know you touched on trust and it’s so important, let alone with your medical team, but obviously with your partner.  It’s so crucial talking with each other.  How do you bring it up with your partner?  How do you talk about it? Sage:               If you’re in a current relationship, different than if you are going to be in a relationship after your diagnosis.  If you’re in a current relationship, it depends on how you two communicate to begin with.  Cancer doesn’t often strengthen relationships, sometimes there can be a little bit of a honeymoon period and people rally.  Often times, how you communicated before cancer is how you’re going to be communicating during cancer.  It does provide you an opportunity to think differently about how you want to communicate. If you are more of the type that might communicate, for example, via text or email or writing notes to each other or bookmarking a page to say, hey, in your spare time, can you read this?  Then I would say, at this moment, continue using that style.  You could say, for example, in an email, I noticed that my body is changing and I’m feeling a little insecure about it.  I want you to know that I still find you attractive, but my desires have changed.  I would love to have a conversation with you about it. You can find maybe a little bit more of an easy open to begin the conversation via email.  Then schedule a time to sit down and talk about it.  If you don’t schedule the time, one, it’s not going to happen.  Two, having that sacred time carved out where you know that that conversation is not going to be interrupted is really important.  If you have kids, it needs to be after their bed.  Or go out on a date and have the conversation.  One of the key things I say to people is, use a fact, a belief, a feeling, and then give them an option to change.  For example, I’ll use a young woman with breast cancer example.  Ever since my diagnosis, you stopped touching me.  I believe it’s because you find me unattractive.  It makes me feel sad that cancer has changed this part of our relationship. Often times, with couples, we might drop those bombs on each other.  You don’t touch me anymore, it’s because you don’t think I’m attractive.  Now, cancer has screwed everything up.  If we can do a better job at saying what we need from our partner, then they have the ability to respond to that information.  The next thing I would say is, then say, I need you when I come in the door to come and embrace me, give me a kiss, or initiate sexual affection or initiate kissing or holding me.  That will help me feel wanted and desired. You can also say things like, I learned today that my cancer treatments are going to affect my interest in sex.  That doesn’t mean I don’t find your attractive.  I’m still very interested in you.  I don’t want that to change.  I’m going to need you to be more proactive on initiating because my body is not going to initiate it for us anymore.  Creating that open dialogue is important.  I think, again, all of it has to do with how we communicate.  That if there’s loving intention behind it, if there’s the intention of wanting to have a dialogue and be honest, then it gives our partners the ability to respond and have their own feelings. We certainly can flip it back on them and say, “How has cancer made you feel?” Maybe their world has been turned upside down too and our bodies have been changed.  That changes the way we interact with our bodies.  Again, thinking about how we can use a fact, a belief, a feeling and then an action can help propel better conversations.  If you’re dating and you’re trying to figure out how the heck you talk about this, I would say, first, trust is essential.  There are certain people who wear cancer shirts on their first date and that’s because they’re advocates and that’s all over their cars. It’s on their websites and their Facebook pages, but the majority of people have cancer more as a backseat, not their front seat.  In those circumstances, I would say, before you disclose and talk about some of the changes, that you just let them get to know you.  Let them get to know who you are because who you are is not your cancer, that’s certainly part of your story, just like your job, or your school, or your family.  Incorporating that as part of your story once you’ve had a few dates, to establish that you actually like this person and are beginning to have trust would be important. Joe:                 Yes, that’s fantastic.  I love your fact, belief, feeling, action framework because it keeps your grounded and it keeps you in check because your emotions are running wild.  You’re not going off-track. Sage:               Yes, really, that fact, belief, feeling, action can be used in any kind of communication.  We can use it with our doctors, we can use it with our friends, when we’re feeling like they’re not being the support we need.  We can use it in other types of conversations with our partner or partners.  It’s a good framework. Joe:                 Yes, what about talking about support?  What if you’re not receiving the support you want from people in your life?  Maybe your friends or family, what’s your advice on that from? Sage:               Yes, so similar framework, fact, belief, feeling, and action.  I think one of the things we need to remember about both our partners and our family members, and our friends is unless they’ve had their own personal experience with cancer, and even then, their own personal experience is different than your unique experience.  Often times, people’s lack of support is mostly done out of ignorance, not to try to be hurtful or hide.  If you notice that your friends are distancing, it may be that they just don’t know how to talk to you about it.  Or they don’t know how to bring it up. Or they’re scared they’re going to make you feel uncomfortable.  Initiating that conversation could be as easy as, “Ever since my cancer diagnosis, I noticed that you don’t call as often, I miss hearing from you.  We don’t have to talk about my cancer, I’d just love to hear from you and talk about how your kids are, how your job is.” Initiate them to engage.  You can also say, if you don’t know what to ask me, I can guide you on that.  Or, if talking about cancer makes you uncomfortable, we can talk about other stuff. Most of the time, they’ll say, “I just didn’t know what to say and I don’t want to make you feel bad.  I don’t want to complain about my stuff because you have so much more going on.” Again, normalising, I guess I have cancer going on but I’m still human and I’ve a life and other things and I’m understanding that you have a life, too.  Giving, again, that ability to share is important by giving them permission.  Often times, with our partners or our friends, it just starts with giving them permission to not know what to say and that’s okay.  If you hear them saying things that are unhelpful, which unfortunately happens a lot, like, everything happens for a reason or god has a plan or you’re so strong, if anyone can do it, you can. It’s okay also to say, I know that’s coming from a place of love, but that’s not helpful to me.  What I need from you, is just for you to listen.  If, for example, they’re spiritual life is important, certainly pray for you, but let’s not bring god into the conversation with cancer.  You can set some boundaries.  Or, if that’s helpful to you, ask for more.  That’s everybody.  You need to know what helps you and what doesn’t. Joe:                 Yes, that’s fantastic, Sage.  I know you mentioned that if perhaps after treatment you’re looking to meet someone new, how do you talk about it when you just start dating, perhaps? Sage:               I think when you’re starting to date and especially here at least for, again, I think it depends on the generation in which you’re diagnosed.  There are 65-year-olds who are dating, and they may or may not be using the apps.  I think if you’re 65 and dating, there is an expectation that you’ve lived a life that probably has had some traumas in it, like a cancer diagnosis.  Dating and disclosing that in your 60s is going to be very different than dating and disclosing that in your 20s and 30s. Again, I think when you look at how do you being to date again, or come out after your cancer diagnosis, certainly, you can try to meet people.  Like if you really want to meet another survivor, go to some support groups of people your own ages, right, connect on different social media sites.  You can connect to people on Stupid Cancer, or other young adult focused cancer websites.  Really, I would say, if you’re just looking to data again, I would not say bring cancer into your dating profile because you are not your cancer.  It’s really important. Unless you’re actively in treatment and it’s hard to hide the appearance, issues related to the cancer diagnosis, then probably you’re going to need to put somewhere in your profile or in your description, currently kicking cancer’s ass or something.  That it’s got to have something that shows your strength.  Again, I think that’s what you need to be really comfortable with.  I always tell people, get really comfortable with your story first, go and practice disclosing to your best friend or to your sister or brother who can say, “That was horrible, do it over again.” You can feel confident because the more confident you are in your disclosure, the more confident you are in your story about your diagnosis, because most likely when you’re on that date, nowadays, enough people have had cancer to know that there are going to be some long-term effects of that, right?  We’re starting to see survivorship so many more years later.  They might say, “Wow, that’s amazing, how does that impact your life now?” That might be the time where you say, “I don’t really know, I’m still figuring that out.  I really haven’t figured out my body yet but I’m working on it.” Or fertility might be an issue, but we’re not sure yet.  That would be your opportunity to disclose some of the things that you might need to disclose at some point.  Being confident, like, yes, I had cancer, I was treated three years ago, I have clean scans, I see my doctor every six months, or every year, I feel great. I’m back running.  Whatever that might be, or you flip it to the things you are now is going to be important.  Again, if you’re in treatment, flip it to the things that you’re doing really well and make sure that that person feels relaxed.  If you’re insecure about it, they’re going to either think you’re hiding something or that you’re not confident that you’re doing well. Joe:                 Yes, I love this advice, Sage.  You’re keeping it honest, but at the same time, it’s not front and centre. Sage:               Yes.  Again, you need to adapt your own personality.  I joke about the people wearing cancer sucks shirts on dates, but I do have some of my young adults who do.  That’s an okay thing.  They slap those bumper stickers on people’s cars as they go on their date.  Use your own unique style.  It would be important to think about.  The other piece of this is social media has really changed anonymity.  If you disclose on Facebook or on Twitter or on any other social media site that you have a cancer diagnosis, even if it’s just a picture of you bald, you need to be prepared to speak to that. Nowadays, people will Facebook stalk you four days before you see them on a date.  Be mindful that what you put out there is going to come back.  If you don’t want cancer to be part of your profile, right, not even your written profile, but your internet world profile, you should be really thoughtful about what it is you’re putting out there in the social media world.  They will find it. Joe:                 Yes, exactly, that is so true, Sage.  Talking about survivorship, there is this expectation that you’re just going to bounce back to life.  That’s not always the case, is it? Sage:               No, not at all.  I haven’t yet met somebody that bounces back to life after their treatment.  I think the challenge with treatments is we do now a really good job at treating the cancer and making sure that we give you the highest survival rate possible.  That means we’re treating you with some pretty heavy-duty stuff that have ongoing side-effects.  As you get to the finish, if you’re taking chemotherapy, the finish of chemotherapy, you may be rejoicing that you’re done, but that chemical stuff still has to get all the way out of your body.  Then there are all of those other secondary effects of late effects. For some people, it has cardiovascular issues, that they they’re followed by that might impact, again, their ability to get back to running like they used to.  Most importantly, though, many people are okay with putting the sexual components like the actual act of sex on hold during treatment.  There is this anticipation of, okay, once treatment is done, we’re going to get back to normal and we’re going to start having sex again, or I’m going to have sex with myself or whatever my normal patterns were before.  They suddenly become very keenly aware that their body is not where their brain is. That their brain may want to be ready and roaring, but their body is fatigued and doesn’t feel good and may have some dryness or some other sexual complications that take time to heal.  Sometimes it’s time and sometimes it’s using techniques to help heal it, that you’re going to have to do for life.  I think the emotional component of that, that comes up for a lot of survivors, the awareness of pull up your boot straps and get through the treatment.  Then the reality that, oh my gosh, what just happened?  It hits you, and as you’re done pulling up your bootstraps, and you’re ready to go back into life, your body isn’t ready yet.  That grief of how cancer didn’t just take those nine months of your life, now it’s taking another year for that healing. Often times, I’ll tell people, when you hear that you’re going to be done with treatment, celebrate that but be gracious with yourself for the next year.  It really takes about a year from when the time treatment ends until a year at that point, where you start to feel like, I’m some semblance of myself again.  That semblance of yourself may look different because the other part of survivorship is maybe your priorities or values have shifted a little bit, even if you were single, maybe the person you’re attracted to after your cancer diagnosis is different than the kind of person you were attracted to prior, just based on your experiences and exposure.  That’s okay too.  I think being gracious with yourself and giving space for both the grief and also for the redefining of today I might have a lot of energy, so I’m going to do what I can.  Tomorrow, I may be totally gawked out and that’s okay. Joe:                 Yes, that’s such fantastic advice, Sage, because I think sometimes we have such high expectations of ourselves.  I’ve spoken to a lot of folks, yes, they talk about if you finish treatment, you expect to bounce back to life and do the things you’ve always done.  That really isn’t how it works out and you have to redefine how you see yourself, how you see your everyday reality and how you see your future. Sage:               Yes, and if you’re in a partnership, it often times is the mistake of the partner not ill-intended, just ill-informed.  That when treatment is done, within a month, you’re going to be back to normal and able to take care of the kids and back to doing laundry and back to running around, and all of those things.  That’s just not possible.  Including your partner in some of those conversations with the doctor about what to expect in healing would probably be important, too, because that’s an opportunity for them to ask questions.  Like, well, how long until?  When will she be back or when will he be back?  It also gives you a platform to say: How long until I’ll have energy again, so that you can ask the questions that maybe he or she needs to hear to better be equipped for expectations that are realistic. Joe:                 Yes, absolutely.  Sage, you have so many fantastic support groups at your centre, so what are some of those things that you see are working, that are helping people connect, help people during treatment and beyond? Sage:               Yes, I think some of the things that we focus on, we have disease specific support groups.  You can go to a support group that crosses all ages and unites you from a diagnosis.  All colon cancer survivors can come together.  Sometimes that’s stage one to stage four, but the unity and connectivity that happens because their shared experiences and the impact of the diagnosis is so similar, that there’s great strength in that community. Certainly, support groups are not for everyone.  We know they can improve the quality of life for people, for people who tend to be more people-people and want to connect to people.  For people who rejuvenate more internally, that may not be a place for you.  Maybe you want to think about taking a mindfulness class or taking an exercise class for survivors that doesn’t necessarily require you to share feelings but still creates that sense of connectivity and community.  At our centre, we really look at mind/body/spirit options, both from a support group around disease but then also, mindfulness based stress reduction techniques, education series on managing some of the side-effects of treatment, so that, again, you might go to a session on chemo-brain and being around other people hearing their stories, gosh, you walk away thinking, “I’m not as bad as I thought I was, or I’m not going crazy, that’s actually a real thing.” That’s the importance of connecting to other people, it’s the validity that one feels when you hear that you’re not alone in that, that you’re not the only one that can’t remember where you put your keys, or you’re not the only one that is struggling with figuring out how to feel good in your body again.  There is a great sense of relief experienced when that can be done.  Again, whether that’s a support group or just joining another thing.  The other benefits we’ve seen, things like our fitness classes, is not just about the physical improvement and awareness of their own bodies, but also, again, that encouragement, that buddy-system that happens around, hey, I didn’t see you at yoga on Monday, what happened?  That shared experience of encouraging one another to take good care of their bodies while they’re in treatment, as well as when they’re after treatment, as well as that accountability around, are you okay? Is there anything you need?  That can create some of that connection between people.  Certainly, there are people who live in remote areas that can’t get to a face-to-face group or can’t get to a class.  I would encourage the listeners that are in more remote areas to find online connections.  The only thing I say about online connections, if you’re going to find a support group, I would really advocate, and I am bias just because I’m a clinician, that you find a group that is facilitated by a clinician. Moderated by a professional that has a license because often times, what can happen, especially on the web, the lines of the interweb lead to all kinds of openness and some people will get on there just to complain or share really scary stories.  If there isn’t somebody who knows how to redirect that conversation and make sure that everybody feels included in the conversation, it can be rather unhelpful over helpful.  Then finding things, even for me, I’m a big fitness guru, so I think even just as sexual bodies, movement is critical for our bodies.  Using online apps that keep you moving. It doesn’t have to be going to the gym.  It can be literally tracking your steps and having a realistic goal for yourself that day, that if you’re feeling more depressed or if you’re feeling more fatigued, set a goal of a thousand steps, can you get that done?  Have somebody maybe in your family or somebody in your treatment that can be that accountability buddy, that can send you a text and just encourage you to get up and walk.  That also has a huge impact on the way you think about yourself and the way you feel about yourself. Joe:                 Yes, that’s fantastic, Sage.  What are some of the best resources online in your opinion that talk about sexuality and intimacy around cancer? Sage:               I wish there were more.  There aren’t a lot of online resources.  I would encourage you to Google, there’s probably a lot you can find connected to specific disease.  Living Beyond Breast Cancer, and Young Survivor Coalition, those are two breast cancer organisations that have great information on their websites.  The National Cancer Institute in the states has as great section on sexuality and cancer, both for professionals, like myself, to read up, like, what do I need to know about side-effects, but also for patients and families.  That’s an easy place to start, as well.  There is a website: cancer-network.org.  That’s for the LGBT community.  I think that’s a great online resource. Stupid Cancer has some information on their website.  Now, ASCO, the American Society for Clinical Oncology, partnered with the Canadian ASCO, and together we created some guidelines on addressing and assessing sexual health in cancer.  Although, that is written for professionals, we wrote it to put in pocket books of physicians and nurses, what is valuable about that is, if you’re a patient, you can go on and you’ll at least get some of the information that is normalising, like, I had no idea that my libido was going to be affected or I didn’t know I was going to have vaginal dryness.  That it will give you some of the information that you might need. Then a nurse named Anne Katz, she’s done some great books, both for men and women, one called: Woman Cancer Sex.  The other one: Man Cancer Sex.  Are also some great books.  I also think, again, depending on your own experiences coming into cancer, and I should have said this earlier, if you have any kind of sexual trauma in your past, I think it’s really important to honor that.  If you can, tell someone because unintentionally as healthcare providers, we don’t know that history unless you share it.  We may touch you in ways that we view as clinical but may actually be emotionally harming you. If there is any kind of sexual trauma in your life, that could be from unwanted touch to molestation, to a rape, it’s really important for us as providers to know that, so we can do a better job taking care of you through your experience.  Then the other piece I would say is, depending on your faith background, your spiritual practices, that your spiritual leaders might be good resources for you on navigating, how do I manage this?  What about my changing body can I do without the context of my faith practice. For example, as a certified sex therapist, I prescribe masturbation, not for the goal or orgasm, for rehabilitation.  If masturbation is not within the religious of culture confines of your practice, I personally, as a sex therapist, would work with your faith leader to talk about what would work in order to preserve this, so that when they are in a sexual relationship, they can go into that fully healthy and knowing their body.  Again, I think some of that may be on online but a lot of that is just talking and sharing. The other piece I would say for any of the women listening, tell the floor therapist, and men too, if you have incontinence issues related to your treatment for prostate cancer or bladder cancer or colon cancer.  Floor therapists are physical therapists that specialise in just the pelvic floor area.  They do amazing work and are tremendous resource to just strengthen that pelvic floor muscle that’s often attributed to sexual pain, or discomfort, as well as incontinence. Joe:                 Well, thank you so much, Sage.  Thanks so much for all your time and your advice.  Thank you for what you do, this is crucial. Sage:               Absolutely.  Thanks for having me.  I look forward to being back again if other questions come up. Joe:                 Absolutely, thanks so much. Sage:               Alright, you’re welcome, take care.  

When you’re done with treatment, when you’re hopefully done with cancer, you don’t want to put yourself under too much pressure.  You want to have realistic expectations and look after yourself emotionally, physically and socially and connect with the people you care about. That’s really what we’re talking about today with Alene: Knowing your rights as a patient Approaching survivorship as a wellness opportunity The importance of connecting with other cancer patients and survivors Find the right physical activity after cancer How to take the recovery process into your hands and much, much more! Links Navigating the C: A Nurse Charts the Course for Cancer Survivorship Care Cancer Harbors Episode 025: How To Stop Cancer From Running Your Life Full Transcript Joe:                 Alene, listen, you’ve been an oncology nurse, you’ve seen a lot of folks go through treatment.  In your experience, what are the biggest myths and misconceptions that people have around cancer? Alene:              Well, one of the biggest misconceptions on the part of patients, people who go through treatment is that they think that as soon as treatment is done, that they’re going to feel better.  They don’t really have any idea of what the recovery process is going to be like.  What happens is, they’ll get done with treatment and after a few weeks, they think, “Well, when am I going to start to feel better?” Then this drags on for months.  They do start to recover in some ways, but in other ways, there’s still a lot of fatigue, there are a lot of things that need to heal. The thing is that people don’t understand that when treatment is over, and the cancer is gone, it doesn’t mean that you’re done.  I think people focus so hard on getting right of the cancer because that’s what you think.  It’s like, get this out of me, I want to be cancer-free.  In the process of doing that, it uses a lot of your body’s resources going through treatment and healing from whatever they do in the treatment.  Also, a lot of people, especially people who have not had cancer will equate cancer with death.  There’s that burden, that mental burden of fear.  Which is a legitimate fear, but it’s not necessarily – more people survive much longer now and it’s not the same as it used to be.  I think in general there are misconceptions on the part of people going through cancer and cancer treatment and then the people around them.  They have their own set of misconceptions, too. Joe:                 Cool.  If we look at people around them, what sort of false beliefs, yes, or maybe misconceptions people have around cancer that maybe their caregivers or maybe their friends or family or co-workers?  I know that in a way from experience, you feel like you’re almost branded with something.  That you’re treated in a different way. Alene:              Yes.  I think to back up for a second, I think that there’s this cancer literacy.  This idea that knowing enough about cancer to have a working knowledge of it when you have to encounter it.  Whether it’s in yourself or it’s someone you know, there’s so much misinformation out there.  I think a lot of people think that once the person is done with treatment that they’re going to just bounce right back and go back to doing what they did before.  They don’t realise that the person might have a completely different outlook on life. It changes people in so many ways.  I think that people who don’t have cancer but they’re watching someone else go through it, they have no idea of the transformation that’s going on inside the person.  Mentally, physically, emotionally.  All these other things that have changed.  I think that for the people who don’t have cancer, what they really need to do is ask the person who does or did have cancer and not assume anything.  Their assumptions are most likely going to be wrong. Joe:                 I think this transformation, this metamorphosis that people go through when they get cancer, it probably really starts at the point of the diagnosis.  It’s such an incredible shock, you feel helpless, you feel lost.  How does someone regain some resemblance of control over their life? Alene:              I think there’s a real tendency for people when they hear, “You have cancer”, when they hear that diagnosis, that they withdraw because they’re so overwhelmed.  They don’t even know how to handle it.  What they really need is to not hide and to reach out and especially to other people who have been through it.  Unfortunately, that’s not something that people are told to do at first.  It’s just all overwhelming with all the workups, the medical workup and the beginning treatment and everything that needs to be done in preparation for that.  One of the most important things that a person can do is seek out other people who have been through it, or even are going through it at that moment. There needs to be a way for medical professionals, people on the treatment team to help the patient reach out to those people, so that they don’t feel alone.  If you’re going through that, if you have a doctor or a nurse tell you details about it, they’re seeing it from their perspective, but unless they’ve been through it themselves, they can’t possibly really tell you what you’re going to experience.  You need to hear it from someone who’s been through it. Joe:                 Yes, exactly.  It’s like I’ve had the girls at reception recommend me a particular doctor because he’s great, and then I talk to him and he’s completely clueless, but I understand that he’s great from their perspective because he’s a doctor or whatever.  From a patient’s perspective, it’s really different.  I couldn’t agree with you more about, of course, finding people who are in the same situation.  I think this goes not just for cancer, Alene, but I think this goes for everything single situation we’ve got.  If you’ve served in the army, if you’ve been to the war, when you get back, you want people who have been through the same thing. If you’ve been through a breakup, then you’ve got to talk to your friends or your mates or just people who have been through that.  I think it’s just so important to connect with the people who went down that road before, who’s experienced what you’ve experienced, maybe through the exact same thing or maybe they’re just one step before.  Even alcoholics anonymous, it’s all about going through the same things that’s someone has gone before and connecting with their experience and being able to go, hey, do you know what?  I’m not alone in this. Alene:              I couldn’t agree more.  The connection.  When you used the word, “Connection”, that is so important, and you have to find people who can relate to that experience because doctors and medical professionals, they’re great at treating the cancer, they’re great at helping you get that disease out of your body, but they don’t go through what a patient goes through.  Just like you’re saying anybody, it doesn’t matter if it’s cancer or any experience in life, when you have something traumatic happen to you, you need other people who understand and who have been there.                         Reaching out to others is the most important thing.  I think we could save ourselves so much trauma and so much difficulty if when a person is initially diagnosed with cancer, if part of what they are told by their doctors is, look, we’re going to plan out your treatment, but what you need to do right now is connect with this group or these people, you need to talk to people who have been through it.  Maybe they have other patients who’ve been through it who are willing to talk to future patients.  There has to be a consideration of the experience of the patient in their everyday life. Joe:                 What do you think?  What can someone do right now?  Let’s say someone is diagnosed and they’ve seen their oncologist or another specialist for the first time and they do want to connect with others, what is the best way of finding those people? Alene:              There are support groups everywhere.  If you live in a big city, most likely, you’re going to find some through wherever you’re being treated.  If you go to a hospital or you go to a healthcare facility, they will have information.  Usually, they have information about support groups.  You can also look online, you can look on social media, there are all kinds of different things.  You can even just Google on cancer support groups in your locality.  You might find one. There might be many different support groups, but you have to find a good one.  You have to find one that resonates with you and that is going to be helpful for you.  There are some groups that are less helpful than others, some will sit around, and it becomes complaining, feeling sorry for yourself.  Which is okay, there’s a place for that, too, in this whole process, but there needs to be some kind of practical help for the person who’s going through it, so that they can take some position steps and get through it with less difficulty. Joe:                 Do you know what, Alene?  I’m a big fan of online support groups because really, it’s like they are communities and it’s just people who are really willing to spend their time and share their experience and help others and give advice.  What I really love about it, it’s also completely anonymous.  You don’t have to filter anything out.  You just say whatever comes to your mind and it’s okay and people get it.  You know? Alene:              Yes, online support groups are great.  Plus, you have so many more people to reach out to.  If you’re only dealing with a local area, you’re not going to have as much diversity of experience and the depth and all the different people who are out there who’ve experienced something.  You get a lot more opportunities to connect with someone who’s been through what you have been, when you’ve got a support group that reaches out all over the world. Joe:                 Yes, for sure.  I remember we talked about the initial diagnosis and I remember that it stays with you, you get over it, and you move on, but still, you get the shock, the sense of being scared, like a rabbit in the headlights and you’re in this system, the medical system, and you don’t really understand what’s happening.  You don’t understand what all of these people do, how am I supposed to behave?  You’ve been in that world, so as an oncology nurse, what sort of things do you think that people – should they be comfortable asking questions and talking to you and talking to their specialist?  What sort of advice do you have on that front? Alene:              I would say don’t expect to find everything you need from your medical treatment team.  like I said before, they are great at treating the disease until the disease is gone?  Once the disease is gone, once the cancer is gone from your body, hopefully, or in remission, you’re still a patient, you’re still part of that medical process.  You need help restoring your life as a person again.  It’s really important to reach out to the community out there that can help you.  There are so many resources out there. There are just so many people and practitioners and experts outside of the clinical setting who can help you.  Like we said, support groups, activity groups, people who teach, people who coach, educators, special interest groups and clubs, even political action groups.  There are all kinds of ways to get involved and reach out to others when you have the energy to do that, or as you’re regaining your energy.  Again, there’s nothing better than talking to other cancer survivors. Just remember that even though the medical treatment is necessary, just remember that is not all of it.  There’s a lot more to it.  There’s a lot more in your everyday life as a person that you need to work with.  All your activities and everything you do doesn’t have to revolve around cancer once you get through treatment, it’s really good to find some supportive people who can help you move back into a more comfortable everyday existence. Joe:                 Cool.  Let’s say I’ve finished treatment and I’m getting the all-clear, which are the words everyone wants to hear.  If you had the survivorship step-by-step manual, Alene, what would you suggest what are the things you should be doing as a cancer survivor?  Why is it important to get involved in other things? Alene:              I have a program.  I’m just going to talk from that.  It does follow that trajectory from immediately after treatment, until you start to move through recovery.  The most important thing is to not expect too much of yourself because people think they’re going to feel better sooner than they actually do.  When they don’t feel good and they set expectations for themselves, then they can be disappointed when they don’t feel good enough to achieve those goals that they set for themselves.  You need to set goals that are realistic and not expect too much of yourself, just accept that you’re going to need time to recover.  Again, with the support groups or another survivor, you get validation from them.  You need validation from other people. You need to be patient with yourself.  Then, as far as what to do, first, you’ll be thinking about your immediate post-treatment needs, yes, you’re going to need that support, you’re going to need to be patient with yourself, realise that your body takes time to recover.  Then to start thinking about things that are going to relive fatigue, physical activity, good nutrition, controlling your weight, whether it means regaining weight that you lost as a result of being sick, or sometimes people gain weight as a result of the treatment. Learning how to take care of yourself and restore your wellbeing, being able to say no and set limits, not taking on too much, paying attention to your emotions and your mental health needs.  It’s very important to reach out to a professional if you’re feeling depressed or anxious, which almost everyone goes through depression or anxiety to some degree after cancer treatment.  It’s very important to realise that you don’t have to go through that alone.  You really should reach out for help because it makes it much smoother.  Then learning what you need to learn to advocate for yourself and your follow-up care, to make sure you get the best care possible as you move away from treatment that you get your check-ups. Also, knowing as much about good health information as possible, so boosting your own health literacy in areas that you didn’t know before.  Thinking about, and this is all as you move further away from treatment, then when you’re several months to a year out, then you can start thinking about setting some goals or how you want to grow in the future.  Personal growth and moving forward.  It’s really important not to set any expectations or too high a goal too soon.  You really need to allow yourself to have that time.  It can take a year or more.  You do have to be patient. Joe:                 You touched on dealing with emotions and worries, so what are some of the tools that someone can use right now, just to have a better life after cancer?  Even during cancer, to deal with these emotions when they inevitably come up? Alene:              Well, one of the things that I suggest to everyone is doing as much physical activity as possible.  It does have a mood stabilising effect.  It helps you clear your mind.  That’s one thing that you can do.  I talked about, again, finding support, finding other people who have been through it, finding mental health professionals, and don’t be afraid to ask for help, don’t feel that you have to go through it alone.  Cancer is just not something that anyone should be expected to handle alone.  In support groups, a lot of times they’ll have specific information about dealing with those feelings and mental health professionals that you can reach out to. For example, my program: cancerharbours.com, that has some materials that you can use to deal with some of those emotions and worries.  I always say that the best source is going to be someone who has been through it.  First, talk to other survivors, see what they did and don’t be afraid to open up and reach out for help.  Then, as far as your physical health and wellbeing, like I said, physical activity is very important.  If you’re able to walk, that is the single easiest and best way to improve your health and wellbeing. You can make it interesting.  You don’t have to make it exercise, you can just make it an activity that you go out and do.  You can walk around in shops or museums or parks or something, just go see things that are stimulating and that will help you either learn something or help relax your mind.  Find someone who can do that with you, so that you have a friend.  Just be creative about it, to the greatest extent you can.  You’re going to get more benefit from the activity that way. It won’t feel like exercise but you’re actually helping yourself physically, you’re helping your physical fitness, you’re building muscle mass, which you may have lost during treatment.  It stabilises your mood, it helps your digestion, it improves your appetite, it improves your overall health and may prevent some other diseases.  You just can’t beat it for an activity. Joe:                 Fantastic.  I guess it sounds to me like what you’re saying is the first number one priority is to really ground yourself after treatment and not really expect too much and set realistic goals?  Then connect with other people who have been through the same thing before.  The next thing is to really focus on your emotions and make sure that you’re handling that side of things.  Maybe seeing a specialist, like a therapist.  Then, also, of course, working on your physical side of things and starting where you are.  Maybe walking or doing other forms of exercise. Alene:              Yes. Joe:                 Like you mentioned, you’ve got your own approach to exercise, right? Alene:              Yes. Joe:                 What does that look like? Alene:              My own approach to exercise?  I recommend walking to anyone who is able to.  Then there are lots of other activities that you can do that are both therapeutic and work both the mind and the body.  One of the programs that I developed is called Fierce.  It builds on enjoyment of physical activity and it’s in a supportive setting of cancer survivors.  What I do with that is, I bring in community practitioners who are experts in different types of therapeutic movement or healing modalities that involve activity.  We do yoga, tai-chi, Pilates, Reiki.  We have physical therapists and occupational therapists come in.  We’ve had people come in and do biofeedback. We’ve had other activities like boxing.  We do so many different things, but this program is a chance for people to experience different ways to move.  What works for one person might not work for the next person.  You need a chance to explore that.  That’s where my fierce concept comes in.  You try all of these different things and then hopefully, someone will find something they enjoy. You’re only going to do it if you enjoy it, it’s really important to find something that you like.  If you’re the type of person who does not like exercise or a routine or feel like they have to stick to some kind of strict guidelines, something like this is great because you get a variety and you can try different things.  Like I said before, if you can make it fun, go out for a hike or go walk around the downtown of your city.  There are different things that you can do so it doesn’t feel like exercise. Joe:                 Yes, it sounds great, Alene.  Yes, when you get variety, you get to experience different things.  Like you say, it gives you a chance to try something and find something you really like. Alene:              Yes, and physical activity is very good cognitively for clearly your mind and it improves blood flow to your entire body, including your brain.  It’s just a great form of therapy, really. Joe:                 Yes, absolutely.  I couldn’t agree with you more.  Like, this is probably the best advice my oncologist gave me was during treatment and during recovery to go for a walk every day.  No matter how crappy I felt.  I did it and it’s helped me so much.  I developed this into a habit and I still do it to this day.  Every night, I go for a walk and I love it. Alene:              That’s great, yes.  That is great advice, yes. Joe:                 Alene, I know you have a unique perspective on the healthcare system, you kind of have a holistic view of the system, you’ve experienced it as someone who has been an oncology nurse, but also as an advocate and a health coach.  You help people through recovery.  You see folks from different ends of the spectrum.  What is the best advice you can give to someone who’s going through the system right now? Alene:              I think it’s important to remember that when you’re in the system, they are treating your disease, they are treating cancer.  They’re not treating you, the person.  No matter what they say, they’re focused on treating the caner and eradicating that.  just remember that the part of you, the whole of you, you are a person.  You’re not just a patient.  You’re going to have to find a way to restore yourself as a person and don’t expect that to come from the clinical side of things, from the medical profession. Unfortunately, you really are on your own with that.  That’s why people like myself and other coaches want to help people because medical treatment doesn’t help address how this whole experience effects people’s everyday lives, and how it extends into their lives beyond the medical treatment of cancer.  Just remember that restoring yourself as a person is a whole other part of this experience. You won’t have a whole lot of time and energy to spend on it when you are going through treatment, but once you’re through treatment, just remember, that part is going to have to come from you and from reaching out to other people and finding your resources.  Just don’t expect to find the answers from the medical community. Joe:                 Cool, that makes so much sense, Alene.  I know you’ve got a book out, which is great, so tell us about that and how can someone also find that book and find out more about you and what you do? Alene:              My book, it’s on Amazon, it’s called: Navigating the C, A Nurse Charts the Course for Cancer Survivorship Care.  To find out more about it, go to Amazon, it’s both on Amazon UK and U.S.  You should be able to get it anywhere.  You can also go to my website, which is: Cancerharbors.com.  I also have a Cancer Harbors page on Facebook.  Navigating the C, the book, is a look at the healthcare system and how all the different stakeholders in the healthcare system can do a better job of working with people who have cancer and of helping the whole experience be less difficult and traumatic.  It’s talking to all the stakeholders in the healthcare system. Physicians, nurses, patients, caregivers, administrations, politicians, anyone who has any kind of influence on the whole process of going through cancer, cancer treatment, after treatment.  Then also people who have never had cancer before.  What it does it, it talks about all the different ways we can do a better job around cancer.  One of the things in the book that I introduce is what I call a cancer literacy program.  Where people who have never had cancer before can learn about cancer. They have a more realistic idea of what it is and what people go through, so that if at some point in the future, either they are diagnosed or someone they love is diagnosed, they will have an idea of a few things they can do beforehand that they can have in place, it doesn’t take a lot of time or energy, but just to be a little bit more prepared for what they might face.  Being a little bit more prepared to interact with the healthcare system.  Having a few things in place in your life that would make it easier, like in advance of every being sick, figuring out who would you ask in your life who could help you. Who could you rely on as an advocate to go with you to doctor’s appointments, or to help you get help with things that you need help with? Who could do the grocery shopping?  Who could take care of your dog or whatever it is that you would have to figure out when you’re under the duress of having a new cancer diagnosis?  If you can just figure out a few of these things in advance, and it’s not just for cancer either, it’s for anything, any health situation or any unexpected emergency.  Just some things that you can do to make the whole process a little bit easier. Joe:                 Fantastic.  Thanks so much for your time, Alene. Alene:              Thank you, Joe.  Thanks for having me.  

When it comes to treating cancer, we rush into it as early as possible, and rightly so, you want to get rid of it, but it’s easy to miss something crucial and that’s where we need to talk about fertility.  You want to make sure you’re clear about your options, even if you’re not thinking about having kids right now! To help you navigate the world of fertility and cancer, you’re going hear from Mahmoud, here is the expert in the field of oncofertility and is a representative of the Oncofertility Consortium.  Here is what we cover in this conversation: How awareness about cancer treatment can drive our choices Saving your fertility before treatment Breakthroughs in fertility preservation Fertility tourism: new global phenomenon and much, much more! Links Oncofertility Consortium Save My Fertility Reprotopia: Reproduction Education For All Episode 009: Why The Oncologist Is Your Guide Through Cancer Full Transcript Joe:                 Mahmoud, there are so many treatments for cancer that they all affect people in a different way.  When it comes to understanding the impact on fertility, it’s really important to be prepared, right? Mahmoud:      Yes, that’s right.  I recommend that each patient who will receive chemotherapy and radiotherapy should know adequate information about the effect of the anti-cancer treatment on his/her fertility.  The main issue in this topic is that the anti-cancer treatments have some side effects.  Sometimes these side effects are very strong and dangerous regarding the fertility.  That’s why some famous scientific organisations will classify the anti-cancer treatments regarding the risk on fertility into different categories. To speak to patients, I always say that a cancer patient should at least have the awareness about the type of anti-cancer treatment she/he will get.  I can just say, for example, as a start, the high-risk anti-cancer treatments should be known very well to the patients.  This category contains total body irradiation, so the patient will receive radiation all over his/her body.  Cranial irradiation, so radiation to the head.  Or ionizing radiation to the pelvis that contains, in females, of course, the ovaries, or for the males, the testes.  Or another type of chemotherapy, it’s called alkalating chemotherapy.  These chemotherapies are very strong.  They cause damage to the gonads.  The gonads means ovaries in females or testes in male.  This alkalating agents like cyclophosphamide or busulfan are also used in many cancers. Or if the patient were to receive surgery including the removal or ovary in females or testes in males. These conditions are really important that the patient be aware of and he/she should know that in these conditions, there is a high risk of losing fertility, up to 80 percent.  That’s why another measure should be provided to preserve fertility.  From the other point of view, okay, this is the highly toxic, or highly gonadotoxic group of anti-cancer treatments, but when they are used, in females, the most common cancer that require aggressive anti-cancer treatment in females are breast or cervical cancers, or leukaemia, lymphoma, and central nervous system. Any female patient that will suffer from breast cancer, cervical cancer, leukaemia, lymphoma, central nervous system, most probably will receive these aggressive anti-cancer treatments, and will be at risk for losing fertility.  For males, the most common cancers are: testicular cancer, germ cell tumour, leukaemia, lymphoma, and central nervous system.  Any male patient that will be diagnosed with these types of cancer, most probably will receive aggressive chemotherapy and radiotherapy. Then should receive also fertility preservation measures.  This is just a summary or short account on the effect of anti-cancer treatments on fertility regarding female and male patients. Joe:                 Yes, that’s fantastic, Mahmoud.  Thank you for sharing that.  In terms of preserving fertility, what are the main options for women? Mahmoud:      Regarding this, we classify the options that we can give to women into three major categories.  Established options that are recognised by most of the scientific organizations world-wide and non-established options or debatable options and experimental options.  The established options are embryo freezing and egg freezing or oocyte freezing.  The debatable options include using of GnRH analog or surgical transposition of ovaries away from the field of irradiation, using of shields to protect the ovaries during radiotherapy. Or fractionation, so we fractionate the doses of chemotherapy and radiotherapy in order to make this less gonadal toxic.  The experimental options include ovarian tissue freezing and later transplantation.  In vitro maturation of eggs and freezing by vitrification.  Very new option called artificial ovary.  It’s something very experimental but we think it will have a major impact in the future when research results improve.  This is just a summary for the options that we can offer to ladies and young girls, also.  This is also very important. The preservations options are provided to adult or young adult women.  Also, to girls, the young girls before puberty.  Any young girl diagnosed recently with cancer at the age of younger than 12 or something can also use some of these fertile preservation options.  This is very important because the young girls with cancer, maybe they are not offered these options, as many doctors are not aware of the availability of some  preservation options to the young girls.  Fertility preservation options can be provided to young adult women and to young girls before puberty.  This is also very important. Joe:                 Yes, that’s crucial that you’re sharing that, Mahmoud.  In terms of the time window before commencing irradiation treatment or chemotherapy, so how much time do you need for these kinds of options to put that into play? Mahmoud:      This is a very good question because time is one of the most important factors for success in fertility preservation strategies.  As long as we have time before initiation of anti-cancer therapy, we can provide more options.  That means early diagnosis of cancer is a very important factor, or very important success factor.  That the patient diagnosed very early and then referred from the oncologist to the gynecologist or to the reproductive biologist centre team, or oncofertility team very early. Then the oncofertility team can assess the situation and discuss with the oncologist and also discuss with the patient the number of fertility preservation options that can be offered, and then fix the fertility preservation strategy.  In emergency cases, so, for example, if the patient is diagnosed just today and she has to start chemotherapy tomorrow, for example, in this case, we have a small number of options because we don’t have time.  Time is very important and according to the time we have, we can provide some fertility preservation options before initiation of anti-cancer therapy. We can also provide some options during the period of anti-cancer therapy and we can later, after, of course, giving the anti-cancer therapy, we can do also some measures to restore fertility.  It is basically two-step strategy.  Step one is to preserve fertility and we can do that before initiation of anti-cancer therapy, or during the period of anti-cancer therapy.  Step two is to restore fertility.  We preserve first and then after preserve, we restore.  This is how we think about time and about the options that we can provide then to the patient. Joe:                 Yes, Mahmoud, that’s fantastic to know that there are definitely options.  What about men, what about men and younger boys?  What are the options for them when it comes to preserving fertility? Mahmoud:      That’s also a good question that you mentioned boys, or young boys, because it is the same.  We can provide options to young boys and also to young adult men.  The same concept, we have three categories, established options, like sperm freezing or debatable options like GnRH analogs, shielding also to the area of the scrotum, or fractionation of chemotherapy and radiotherapy, and experimental options like freezing of the testicular tissue or using stem cells and some other new techniques. I want to emphasize that the adult patients either women or men have big numbers of options.  While the younger patients, due to the biology and because they are before puberty, either boys or girls, have small number of options.  That’s why the younger patients, or young cancer patients, for us, are difficult cases a little bit, because we don’t have enough options for them.  In practice, we observe some sort of lack of awareness among doctors and among patients, or their legal guardians about their available fertility preservation options that can be provided in these cases. Maybe I take this chance, dialogue with you, to say that young cancer patients, either girls or boys, can benefit from fertility preservation options and should be informed or well-informed about this by their oncologist and should be referred as early as possible to the oncofertility team in order to design the suitable fertility preservation strategy for them. Joe:                 You make such a crucial point, Mahmoud.  I know that, for example, my oncologist was great in telling me about my options and suggested sperm freezing before treatment.  Not everyone is so lucky.  I guess if you are going through this process, what are some of the questions you should be asking for and what should you do if you’re not getting the answers you’re looking for when it comes to fertility preservation and perhaps talking to your specialist? Mahmoud:      This is a very good question because this is how we deal in reality.  I can say that for each cancer patient, that once diagnosed with cancer, he has to ask his oncologist, or her oncologist, the following question: What is the risk of gonadal toxicity of the anti-cancer therapies that I will receive?  What is the probability of losing my fertility after receiving this anti-cancer therapy?  This is very important because if the risk of losing fertility as a result of the anti-cancer therapy is greater than 50 percent, then a fertility preservation strategy should be provided as soon as possible, before initiation of anti-cancer therapy. The first question, what is the risk of losing my fertility with this anti-cancer therapy?  The second question, if the risk is greater than 50 percent, what are the possible fertility preservation options that I can receive, and where I can receive them?  It’s very important, sometimes patients don’t know where they can receive these services.  Also, these services are not present in each hospital.  These services, fertility preservation services are relatively new medical treatments and complex. You can find them only in University hospitals, for example, or specialised hospitals. The oncologist has to inform the patient where he can, or she can get this fertility preservation treatments.  Also, it’s better to tell the patients how much these fertility preservation options or treatments cost?  In many situations, or many countries, the coverage of the insurance is not universal and some fertility treatments, even, and fertility preservation treatments are not covered by insurance.  Then they are very expensive services.  Many patients cannot afford this.  It is a complex process but very crucial, very crucial and very important to make information available to the patient and to give them a guide to where they can go and how much and if they need financial help, where also they can ask and get financial help. Of course, the awareness of the community is very important.  There are many universities and centres worldwide that are exerting good efforts to spread awareness about fertility preservation options and care for cancer patients.  In case the patient didn’t get enough information or no information from his oncologist, he has to search at least on the internet about the major places or sites that provide enough information for this.  Of course, in the United States, there is Oncofertility Consortium at the North-western University, and they have a very good online service. One of these services is the website: Savemyfertility.org.  Through this website, there are enough information about all steps in fertility preservation for cancer patients and good answers to most of the questions that can be asked in such situations. Joe:                 That’s fantastic, Mahmoud.  You also mentioned that there are some experimental treatments, such as freezing testicular tissue, are these experimental methods, are they workable in practice right now? Mahmoud:      Yes.  In cancer patients, the experimental options are new options, many scientific groups are trying very hard since a long time to provide options that can help preserve fertility in wider groups of patients.  For example, we have established options, but these established options are not suitable for all patients.  That’s why we have to develop new methods to cover more or to benefit more patient groups.  This is the concept.  Regarding the experimental options in case of female cancer patients, here comes ovarian tissue freezing or transplantations. This technique actually is in practice for more than 15 years.  It is successful and until now, the number of babies born and reported worldwide following this technique is more than 120.  That means that a female cancer patient before initiation of anti-cancer therapy, she can receive small surgery to remove one ovary or part of her ovary.  Then we freeze this ovarian tissue for years until the patient starts chemotherapy and finishes the chemotherapy and radiotherapy and become fit again and willing to become pregnant.  At that time, if she suffered from problems to get pregnant in a natural way, then she can use her stored or frozen ovarian tissue. We thaw out or defreeze her ovarian tissue and transplant this tissue back to the same patient again.  Then with some medications, we stimulate the ovulation again and help the patient to get pregnant.  This process was successful and produced more than 120 babies, reported worldwide.  For ovarian tissue freezing and/or transplantation, it is in practice and success rate is about 25 percent.  This is, as an experimental option, very acceptable and good success rate.  With improvement of the technique of freezing, transplantation, the success rate of tissue freezing and re-transplantation will increase dramatically in the near future. Regarding the male patients, the testicular tissue freezing is relatively something new than the ovarian tissue freezing.  It is not widely used in practice for one reason, because the established option of sperm-freezing is very successful and very easy option.  It is satisfactory for many doctors to depend on sperm freezing.  The problem comes in the young boys.  Young boys before puberty don’t produce sperm.  In this case, we have only one option left, just to take part of the testes or testicular tissue and freeze it and then think how we can then use this tissue to produce sperm in the lab.  Many scientific works have been done in this area and they have promising results. Until now, there are no babies born from testicular tissue freezing and transplantation, for example.  For women, ovarian tissue is in practice since more than 15 years and produced babies.  This is the difference between them.  In general, the future comes from these experimental options.  The options that are experimental now will be established within the next five to ten years or so.  We are progressing in this direction. Joe:                 That’s fantastic, Mahmoud, to know that we are moving forward as a society in this area because there are many challenges around fertility.  They are not only medical but, of course, there are financial, legal, and even religious reasons that can get in the way.  Sometimes people can look outside of their country to get what they want, to get this sorted.  What do people need to know about that? Mahmoud:      This is a very important question and situation and phenomenon.  Now, fertility treatments are more internationalised.  Many patients travel abroad to seek fertility treatment.  Actually, this is a global phenomenon, and it has a definition in science.  The big organisations in reproductive medicine in the United States, the American Society for Reproductive Medicine and also, in Europe, the European Society for human reproduction and embryology detected these phenomena, that many patients travel from their home country to another country to receive fertility treatments for different reasons. This phenomenon now has a scientific term, it’s called cross-border reproduction care or fertility tourism in some cases.  Cross-border care or CBRC is a global phenomenon growing and it is a reality.  The reasons for these phenomena is that some fertility treatments are not available in some countries, or some fertility treatments are expensive in some countries, or some fertility treatments are not allowed by law in some countries due to a religious or cultural reason, as you said.  That’s why some patients don’t find these treatments or don’t find access to these treatments in their home countries, that’s why they travel to another country to receive these treatments. For example, third-party reproduction in general and surrogacy, so sperm donation, egg donation, embryo donation and surrogacy are not legally allowed in many countries.  Patients who seek such type of treatment don’t have other options, rather than travelling to another country that allows such type of treatment.  For cancer patients, as we speak about cancer patients, this issue is very important because sometimes cancer patients don’t receive fertility preservation treatment or services before cancer treatment, for many reasons, maybe time, lack of time, or lack of awareness or whatever. If they receive the cancer treatments and they suffered later from infertility or fertility loss, the only option for them at that time is to seek family building options, or third-party reproduction or adoption.  Some  cannot have children after losing their fertility.  In such cases, the only option available for them now is to go for third-party reproduction or adoption.  I can see many countries don’t allow such type of options and then the only way for patients in this case is to go to another country that’s allowing such types of treatment. At any case, these patients also should receive good information about where they can go.  If they will travel abroad, their doctors or their treating doctors should tell them where they go, and which type of treatments should be the best options for them.  This is very important because countries are not universal in their legal systems, or pricing, regarding the medical service. To avoid any kind of exploitation, or harm to the patients, good information should be provided by the treating doctor and also selection of destination, of a good destination that can provide good health services according to the international guidelines.  In this case, I guess it’s very beneficial, this cross-border reproductive care phenomenon can be very beneficial to many patients, as long as there are some control and guidance.  Some guidance and control regarding such type of treatments. Joe:                 Yes, fantastic, Mahmoud.  I thank you so much, that was enlightening. Mahmoud:      Thank you.  

The way I see it, a clinical trial is a bridge between research and the patient, this is an opportunity to access the latest treatment out there to get the best outcome possible, which is what it’s all about, right? So, in order to find out more about how it all fits together, I’m talking to Ian Davis who is the chair of ANZUP, a group of medical experts who look after clinical trials for below-the-belt cancers.  Here is what we cover in this conversation: The Guinea Pig myth Are clinical trials safe? When is placebo given (if at all) Clinical trials as decision support tools Why you should ask about one now and much, much more! Links ANZUP Trials Group ANZUP ClinTrial Refer app Australian New Zealand Clinical Trials Registry Episode 007: How To Use Your Inner Resources To Better Deal With Cancer Full Transcript Joe:                Ian, it’s such a pleasure to meet you and to talk to you about clinical trials.  I’m really excited about it because to me, really, clinical trials are the front line to fighting cancer.  It’s making a huge difference for folks out there.  Unfortunately, most people don’t realise how important this is and the critical role it plays in fighting cancer.  What’s your perspective on that? Ian:                  Yes, thanks, Joe, for the chance to talk to you and to talk about clinical trials.  It’s very important. Every time you go to your doctor to get your blood pressure medication, or the medicine for your cholesterol, or even if you’re going to go and buy some vitamins from the chemist and you think that’s going to help you, you do that because you got some information about it.  You know that, here is a treatment that might help you in your condition or might not.  You’ve got information about how safe it is.  When you should use it and when you shouldn’t use it.  You might not be aware you got that information but it’s there.  That exists because clinical trials have been done in all of those situations. Every time you go to the doctor and you have cancer and you’re having a discussion about what sort of treatment might be appropriate for you, the advice that’s being given to you is being given in the context that a clinical trial has been done and it’s given you evidence.  Now, we hope that that’s the case.  The reality is, for many of the clinical situations we find ourselves in, the evidence is not there, we’re extrapolating from what we know or from the basic science, or from our understanding of the condition but there might not be a clinical trial to guide us in decision-making. In that situation, it becomes a whole lot harder to make recommendations for people.  That’s why we need to continue to push this agenda of doing more clinical trials, doing them better, so that we can get more information, help people, and support them in their decision-making. Joe:                 Absolutely.  Yes, that’s fantastic, Ian.  There are so many myths and misconceptions about it, I think it’s really important to be really clear about that.  A lot of them is that clinical trials are administered as a last resort, is that true? Ian:                  No, it’s absolutely not true.  Sometimes it’s appropriate to think about taking part in a clinical trial as a very first treatment.  We do a lot of those clinical trials here, at our hospital and through ANZUP Cancer Trials Group, where we do clinical trials for genitourinary cancers.  Many of the trials we’re doing are sometimes the first treatment that someone might have had from their disease.  Definitely not a last resort.  People should understand that if they’re going on a clinical trial, they’ll always get the best possible treatment. Joe:                 Yes, absolutely.  I think that implies that it’s an experiment, this has been thoroughly researched and it builds on this body of knowledge that already exists out there. Ian:                  That’s right.  There are different types of clinical trials.  When you’re first taking a promising treatment into the clinic to see if it works.  They don’t even know how to give these medications, sometimes they might never have been given to humans before.  We don’t know what the side-effects are, we don’t know what the safe doses are, don’t know how frequently to give these medications.  Early phase clinical trials help us to answer those sorts of questions and to give us some indication about how active it might be. We usually have some clues about these things from earlier experiments in the lab and elsewhere, but you really have to ask these questions in humans.  Then, as you go on further in the development, process, then you start to compare the clinical trials against the best standard treatment that’s available to see is it better in some way?  Does it make people live longer?  Is it better tolerated?  Is it cheaper?  Is it easier to give?  Are there other sorts of benefits besides survival that we might be looking for, for our patients? Joe:                 Yes, absolutely, like quality of life. Ian:                  Exactly. Joe:                 Cool.  I’ve heard that there’s a placebo involved.  Is that true?  How does it work? Ian:                  Yes, a placebo is an inactive treatment.  Sometimes it’s appropriate and necessary to do that.  The way I pitch the discussion to people who are talking about this is, there are certain situations where it’s not necessary to jump straight in and have another active treatment.  Let’s say, for example, you’ve got a certain type of cancer, you know it’s there, it’s growing very very slowly, it’s not causing you any problems, it’s not likely to cause any problems in the near term, and there might not be any treatment that’s out there and known to be effective, or there are treatments, but they’ve got side-effects and perhaps it’s not the right balance for you to go down that pathway at the moment. In that situation, the best approach for that person might be to say, we’re not going to give you any treatment now, we’re going to watch and see how the cancer grows and at some point, in the future, you might need to have some treatment.  Now, that’s not saying no treatment, that’s about the timing of treatment.  For that person, the best treatment for them right now might be nothing at all.  In that situation then, it’s entirely okay to use an inactive treatment like a placebo because people getting the placebo treatment would be getting what they would ordinarily do anyway. So then you might ask, why have it at all?  The reason for that is that cancers are sneaky things and the treatments that we test are sometimes difficult to evaluate.  So someone with a cancer that’s complaining of tiredness, or they get a rash, or they grow a second head or something like that, how do you know that’s a side-effect of the treatment, or maybe something that was going to happen as a result of the cancer growing anyway?  A lot of the clinical trials that have been done with some of the new treatments suggest, for example, let’s take kidney cancer for example, one of the most common side-effects was tiredness.  You might thing, okay, these drugs cause tiredness, but then you look at the people who got placebo and they’ve got tiredness, as well. So you have to understand what the baseline levels of these things are in order to really understand what the impact of the active treatment is that you’re testing.  But the converse is also true.  If we know that there is an active effective treatment for your cancer, and that’s what you should be getting now ordinarily, then it’s completely unethical to do a placebo in the trial because those people will not be getting the treatment that you know they should be having. As I said before, if you go on a clinical trial, you know that you’re going to be getting the very best of care.  If you go on a clinical trial, which is comparing a standard treatment versus a new treatment, then the new treatment may or may not be better, the other people in the arm are getting the standard treatment that we know is best.  Sometimes the standard treatment is no treatment.  Then those people might be receiving a placebo but they’re not missing out.  They’re getting exactly what they would ordinarily do.  They’re being watched very closely, they’re getting the very best possible care. Joe:                 Yes, I think what you’re saying is, in any case, you’re in safe hands and you’re getting the best solution out there. Ian:                  That’s right. Joe:                 Ian, what’s the process for putting together a clinical trial?  How does it come about and how does it evolve? Ian:                  Well, I guess there are two broad answers to that.  When people think about clinical trials, they think about things that are run by drug companies.  They are the commonest sort of clinical trials that we do.  A big drug company out there with armies of people working in their labs come out with new treatments, and they think, here’s something that looks promising and we’re going to make zillions of dollars out of this and cure cancer and our shareholders are going to be happy.  Nobody is going to be angry at that company if they cure cancer and I’d be delighted if they put me out of business.  In that situation, they will then come to people like me who do clinical trials and say, “Are you able to find people to go into this clinical trial.” We look at the science behind it, we look at the clinical trial and the safety and the ethical aspects of it and say whether that’s something that we do.” That’s something that comes from externally. The other broad group of clinical trials are what we call: Investigator initiated trials.  This might be where someone who’s experienced in the field says, look, there’s a real clinical need here.  These people are not doing as well as we would want them to do, the treatments we’ve got are not as good as we would like them to be. Here’s an idea about how we might improve things.  In that situation, the idea has come from that person, that’s why it’s called investigator initiated.  That might be a very small-scale trial that’s done in just one or two places.  Or it might be quite a large-scale trial.  ANZUP, for example, has led several international clinical trials that have totalled several thousand patients.  These are investigator-initiated trials.  These are ideas that we came up with and have developed with our local and international collaborators and rolled out hopefully to change practice in the future. In that situation, you bring together a team of people to look at the science, look at the treatment, experienced in clinical trial design and all of the operational and ethical aspects behind all of that.  Some of the practicalities that people might not think about, like how do you ship the drug and how do you dispose of it when it’s expired and what do you do about the safety reporting and all of those sorts of questions. We always try to add value to it, as well.   Are there other questions we can ask?  Can we understand the science a bit better by collecting tissue or blood samples?  Can we look at people’s quality of life and see if this treatment is having effects on that?  Can we look at some of the health economic issues around this treatment, as well?  This treatment we’re testing might work just as well as the old one, but it might be a much more cost-effective way for the community to spend its health dollars.  We always try to add extra value to our clinical trials in that way. Joe:                 It makes so much sense.  You mentioned change of practice, so who decides whether the treatment has worked and if it’s to become a part of standard protocol? Ian:                  That’s a really interesting question.  There are several levels to that.  The first answer is the look shiny thing response.  We’re humans and we love to see novel things come through.  Our initial reaction is, something comes through, it’s new, it’s got some exciting science behind it, it must be better.  Sometimes it is, sometimes it isn’t, sometimes it’s just the same as the old treatment, sometimes it’s actually worse and we use the previous one.  That’s going to alter practice in that way.  In practical terms, if we’re talking about drug treatments in particular, it really comes down to making that treatment available in wherever you might be.  Different regions around the world have got different ways of approving and reimbursing drugs. In the United States for example, if you get FDA approval, then you can access that drug.  You might have to pay for it and that’s a whole separate question.  In Australia, there are two levels of approval.  It needs to be approved by the Therapeutic Goods Administration, that way we can legally prescribe it in Australia.  Really, it’s how it’s taken up into practice that needs to be reimbursed through the Pharmaceutical Benefits Scheme.  That’s a much more difficult hurdle to jump over because the government has to tip money into supporting these things and they’re often expensive treatments.  Once that has happened, then treatments are far more likely to be taken up. Some treatments, though, are using old drugs in new ways.  An example recently is in prostate cancer, where a few years ago some evidence came out that using a relatively old chemotherapy drug in a different way, much earlier in the disease course, translated into far better outcomes in terms of survival.  That information came through at exactly the time that that drug was derestricted on the Pharmaceutical Benefits Scheme, so it was cheap and easy to use.  Uptake of that information happened literally overnight.  The next day after the conference, people were getting that treatment in Australia, it was taken up very rapidly. Joe:                 Wow, that’s fantastic.  You mentioned also different scales.  You said that sometimes there’s a small group of patients who go through clinical trials, sometimes there’s a bigger group.  How is that decided, and does it depend on a drug?  Does it depend on the treatment, how does it work? Ian:                  That really comes down to the question that you’re trying to answer.  If you are early in the development of the drug and you’re looking for information about how to use it, how often to dose it, what doses to use, what the side-effects are, phase one of clinical trial, you often require only a few patients to get that information. A phase two clinical trial would be where you are rolling it out into a group of people, all with the same sort of disease and you’re trying to see how effective this treatment might be.  You need larger numbers, but it might be 50/100/200 patients typically on a study like that.  If you’re trying to do a phase three clinical trial where you’re now putting it up against the standard treatment to say, is this actually better or at least as good as the previous treatment, then you often need hundreds or even thousands of patients.  Particularly, if you’ve already got very effective treatments, it might be quite hard to prove to yourself that you’ve got something that’s doing even better than that.  That might require a lot of people followed for a long period of time before you get that information.  It really does come down to the questions you’re trying to answer in that specific trial. Joe:                 Absolutely.  Then there’s another area that’s fairly recent, is the online interventions, and I just wanted to talk to you and get your perspective about how does that work?  How does it get implemented across the world if it goes to plan? Ian:                  We’ve been talking about clinical trials in the usual sense that people think of them, in terms of here’s a new drug, let’s test it.  Of course, there are other sorts of clinical research that can be done, as well.  Clinical trials might involve surgical devices.  It might not involve any sort of typical medical intervention.  As an example, ANZUP did a clinical trial a few years ago of a supportive care intervention for men with prostate cancer.  This was a psycho-oncology study led by one of our researchers, Professor Suzanne Chambers from Queensland, now New South Wales.  This was a study using a behavioural therapy to try help them and their partners deal with the issues around prostate cancer. There are other sorts of clinical studies, as well.  ANZUP is running something called e-TC, which is a web-based approach where men with testicular cancer can login and find out information about testicular cancer to meet their own needs.  If they want to work through all of the modules on their website, they can do so.  If they’ve got a specific question, they can target in and answer that information.  That will help you in terms of provision of information and it might steer you to other support systems, as well.  Those sorts of systems also lend themselves to other types of research. We can also collect information from people using systems like that, that can help answer other types of questions.  For example, what is the information that people with testicular cancer need to understand?  What are the most common sorts of issues they need in terms of supportive care or other sources of provision of information?  There are other types of research that can be done through those sorts of online interventions. Joe:                 There’s typically, I understand, a group of people that are possibly from different disciplines that are working on putting together a clinical trial, is that true? Ian:                  ANZUP is a very multidisciplinary organisation and I think that’s one of our strengths.  We are made up of clinicians and researchers from all types of medical and other disciplines involved in the care of people with these types of cancers and in research of these condition, as well as community representatives and other stakeholders too.  We think that we get most value out of these sorts of trials when we’ve got people coming at them from a whole range of different perspectives.  That’s what I was talking about earlier when I said we’re trying to add extra value to these clinical trials. We don’t want to know just how safe this drug is, or this intervention is, or whether it improves survival, that’s important information.  If we’re making people live twice as long and they’re three times as miserable, then we’re not doing anyone any favours.  We have to understand those sorts of questions, as well.  wherever possible, we try to get that broad base consultation and trial design right from the beginning, so that we can collect the information that really is going to make a difference.  In many cases, coming back to your earlier question, that sort of information might make the difference as to whether a treatment really is adopted as a standard therapy or not. Joe:                 Yes, absolutely.  You mentioned there are different trials but there is definitely a progression from different stages through how its designed.  Does every treatment for cancer go through a similar process?  With those different check points and different stages? Ian:                  In broad terms, yes.  There has to be the first time that you try this treatment in humans and you have to work out how best to give it.  Sometimes the process is accelerated.  If you’ve got a magic treatment that makes your cancer disappear, then that’s going to go through the process quite quickly, all the way through to approval and it might skip some of those stages along the way.  In general terms, there is a steady progress through these phase one, two, three clinical trials. Then after a drug is approved, there’s often phase four clinical trials, which is basically post-marketing surveillance. That’s when you’re going to find out what the real-world experience is in the community and do these drugs perform as advertised?   Are we starting to see the really, really unusual and rare side-effects that you wouldn’t have picked up in the smaller numbers in the earlier phase clinical trials? Joe:                 Got you.  Where does the money for clinical trials come from? Ian:                  This is a perennial question.  If it’s a drug company sponsored clinical trial, then they will provide the drug and the resources for doing the study.  That money is spent at the hospitals, not on me, it doesn’t go into my pockets.  It’s spent on paying the salaries of the research nurses, the costs of giving the treatment.  Now, if it’s intravenous treatment, or if it’s requiring time in hospital, or those sorts of issues where you need to actually use some resources to give the treatment, that’s where the study costs go.  Paying for ethical review, paying pharmacy costs, all of those sorts of things behind the scenes. For an investigator initiated clinical trial, then it becomes much more complex.  An example of ANZUP, we received some federal government infrastructure money through Cancer Australia, which provides us with some infrastructure support.  That helps us pay some of our salaries in the office and keeps the lights on and puts paper in the photocopier, but we’re not allowed use any of that money to actually run a clinical trial. Every time we’ve got a clinical trial, we have to find the resources for that separately.  If I came up with a cure for prostate cancer today, and as I’m speaking, it is the end of July 2018, then the earliest I’d be able to put in a grant application to the NHMRC will be early next year.  I’ll find out the result of that at the end of next year.  I’ll have maybe a ten percent chance of success for funding to start in 2020.  That’s 18 months away from now and I just told you I had the cure for prostate cancer. 18 months before I can even start doing that, if I’m relying on that.  We’re always looking for other creative ways of supporting this sort of research.  ANZUP has got a fundraising arm to it, so we can try to at least initiate some of these studies off our own back while we’re waiting for grant funding. We often do work with pharmaceutical companies, the difference there is, though, we are the sponsor of the study, not them.  We control and own the data and not the company.  They get benefit from it because we’re testing their treatment, but this is our trial, they’re not driving it.  There’s a level of independence from the drug company there.  That’s a model that’s worked very well.  The companies like it, as well, because they get very high-quality data in a short time on questions that they might not otherwise be studying.  It’s a perennial problem for us.  Clinical research is expensive and it’s slow and difficult, but really important. Joe:                 Yes.  Ian, I know you have a perspective on these magic cures for cancer, as well, so are we likely to get a cure for let’s say prostate cancer or testicular cancer or kidney cancer? Ian:                  You’ve listed three interesting cancers there.  That’s three that have great interest to me.  For people that might not know, testicular cancer is almost always curable right now.  That gives us a challenge.  It’s going to be difficult to improve upon that.  Prostate cancer and kidney cancer, if it has spread beyond where it started, is usually not curable.  Our treatments are aimed to controlling to disease, hopefully shrinking it down, hopefully making people live longer and live better, but understanding that we might not be able to get rid of the cancer. Your question is about whether we’re ever going to be able to cure these cancers.  I don’t know.  A lot of very famous people have gone on record of saying silly things.  Man will never be able to travel faster than 45mph.  They’ll be one IBM computer in every city one day.  Silly comments have been made.  I’m not going to make any rash predictions.  The challenge for us, though, we use terms like cancer, like prostate cancer, as though this is just one entity.  That’s not the case.  Even within a single person’s cancer, there’s literally billions of different cells and many of them are genetically distinct and behaving in different ways. Even in that one person, you might have some cancer cells that are sensitive to a treatment and some that are not.  We’re trying to think of clever ways around that, so some of the new immune-based treatments that work by stimulating the immune system have their effects, not by acting on the cancer but by stimulating normal cells, trying to get the immune system to reject the cancer like it would reject my kidney if I put it into your body.  That’s attractive and is looking very promising in a number of cancer types. It’s been seen by many in the community as a really significant step forward, and it is, but to our disappointment, it doesn’t work in every type of cancer.  We’ve still got to understand why.  I think we’ve still got a long way to go, unfortunately. Joe:                 Cool, got you.  Ian, I know you’re passionate about people having a mindset, when they would go into hospital about to start treatment, to be asking whether there’s a clinical trial that’s possibly available to them.  Can you talk about that? Ian:                  That’s my dream, that we get rid of this guinea pig mentality that people go along, and they’ll have the conversation with their doctor and say, okay, I understand what the standard treatment options are, are there any clinical trials that might be suitable for me?  There might or there might not be, but if there are, then I would hope that people would consider taking part in those sorts of things.  We’ve very excited about that.  We’re trying to build that sort of capability.  It’s difficult and it’s often seen in health services as something that’s in addition to the usual clinical service provision.  I don’t think that’s true at all.  I think that clinical research and clinical trials are absolutely integral to what we do and should be part and parcel of our everyday work and therefore, part of our everyday treatment, as well. Joe:                 Fantastic.  If you’re a patient, how do you find out about that?  Do you go to ask a specific doctor?  Do you keep track online?  What do you do?  How do you understand about how it works? Ian:                  Probably the best starting point is to talk to the specialist that’s looking after your condition.  GPs are often well-informed in general terms about clinical trials but might not know the details of the specific clinical trials.  Your specialist should understand that and should be able to point you in the direction of where these clinical trials are happening, or where to find out more information.  For people who just want to find general information, there’s a number of sources.  You can go to Cancer Counsel websites, there is an Australian and New Zealand clinical trial registry, ANZCTR, if people Google that, that will come up. There’s a site based in the U.S.  called clinicaltrials.gov.  Which is also good.  Some of these are in more technical terms, though.  ANZUP and other trial groups have an app that you can download for Apple devices or Android devices called the ANZUP ClinTrials Refer App.  That’s really fantastic because it will tell you in the case of ANZUP, for example, all the trials that we’re doing and whatever disease, where they’re open, some information about the trial and where to go for more information.  That’s pitched at not just clinicians but anyone in the community.  It’s a fantastic resource. Joe:                 Fantastic.  Ian, if someone wanted to start treatment for cancer and they were considering a clinical trial and they’ve never heard about it, what would you tell them? Ian:                  The way I approach this is, I try to explain everything I can about the condition to this person and what the current standard options would be for them.  If there is a clinical trial that’s appropriate and suitable for them.  I then put it into that context.  If this is someone who’s thinking about having some form of active treatment and as a clinical trial, that’s when I would then bring this in as an alternative for them to be thinking about.  People need to understand, they don’t have to do this, this is completely voluntary. If there is a trial that’s suitable for you and someone is recommending it for you, they will give you information about it.  We encourage people not to make snap decisions.  We like you to go away and have a think about it, take this written information away, read it, scribble on it, talk about it with whoever they want to, then come back and tell us what their thoughts are.  They might say at the end of that, look, this sounds interesting but it’s not for me.  In which case, that’s absolutely fine.  It doesn’t affect our relationship with you at all and we’ll continue to do what we’re going to do anyway. If the clinical trial looks like it might be something that they’re interested in, then generally what we do is get them to sign the consent form.  That consent form is not a mortgage.  What that means is, they are agreeing to take part in the next steps of the clinical trial.  That means also that they allow us to collect information about them, that’ll eventually be published somewhere, but not in a way that they can be identified.  It allows us to use a treatment that might not otherwise be approved for use in Australia and all of the other information that’s in the consent form. I also point out to them that if someone goes under a clinical trial and at any point they want to or need to come off that treatment, they can.  They’re not locked into something.  We encourage people not to and this is a good reason, but if there is a good reason, then of course, that takes priority.  People’s best interests are always paramount when we’re giving any sort of treatment and in particular when people are on a clinical trial. Joe:                 Yes, that’s fantastic, Ian.  I love that there is no pressure, that as a patient, you still feel in control of the process Ian:                  That’s absolutely right. Joe:                 Cool.  If someone wanted to find out more about ANZUP, maybe even find a way to contribute, what would you do? Ian:                  They could go to our website which is: www.anzup.org.au.  There’s a lot of information there about what clinical trials are, in general, and also specific information about our clinical trials.  If people want to contribute financially, and some people are very interested in doing that, then there’s also information on that website about how people can contribute in terms of financial contributions, but also in terms of raising awareness about clinical trials and what we do. Joe:                 Fantastic, Ian.  Thank you so much. Ian:                  Thank you very much.

Yes, it’s hard to put up with cancer, but isn’t it also true that you’ve had to stand up to challenges before?   Isn’t it true that you’ve had to come up against problems, against pressure, you had to deal with uncertainty, so is there anything that’s helped you then? Something that’s made things easier? Something that you could perhaps apply to your life right now? This is just one cool strategy that you’re going to hear about from Lisa.  Lisa Beatty is a psychologist at Flinders University in Adelaide and she has developed this fantastic online program called: Finding My Way, that helps you and me to deal with cancer physically and mentally. Here is what we cover in this conversation: Common hurdles for all cancer patients (including you) How to deal with depression during cancer Why you should not put off things for later (during treatment and beyond) Building momentum in recovery How cancer stereotypes get in your way Why cancer is a family illness Getting distress help without leaving your home and much, much more! Links Finding My Way Cancer Council SA launches Finding My Way Depression and anxiety in long-term cancer survivors compared with spouses Carers Australia Episode 023: Getting The Support You Need, On Your Terms Full Transcript Joe:                 Lisa, you obviously have seen a lot of folks who struggle with the mental side of cancer and I guess some things come up over and over again.  What are some of the commonalities that you see? Lisa:                 Yes, there are quite a few commonalities, regardless of what sort of cancer type people have or whether it’s advanced or early stage cancers, there are lots of similarities in terms of the initial emotional impact.  There’s the initial shock of the diagnosis.  I see a lot of people struggling with guilt about what they’re putting their family through, also a lot of distress.  It might not necessarily be at the level we’d say is clinically significant depression or a depressive episode, but it’s definitely impacting on their ability to enjoy their life and do their normal activities. Also, things like a lot of worry and fear during treatment, about how their treatment is going, whether it’s working, uncertainty about how their test results are going to be going as they go through.  There are lot of those, those are the common worry, fear, anxiety, distress, and sadness and depression can be really prevalent as well.  We know that when people are going through treatment, depression is the most commonly diagnosed problem for people.  Where they actually have lost interest and pleasure in normal activities and they’re feeling consistently down and sad and depressed, as well. They’re the most common hurdles that we see.  Then on top of that, there are also things like a lot of people struggle with body image changes.  If they’re going through things like chemotherapy, then their body image can really quite drastically change.  A lot of hair loss, not just on their head, but whole-body hair loss.  Also, people who have had surgery or might have, for example, if it’s bowel cancer, they might have a stoma for the first time.  It’s a lot to adapt to. I think that’s the biggest thing, summarising all of that into one sentence.  It’s a huge adjustment.  We would tend to just say that these are people having difficulties coping when they’re adjusting.  They’ve never had to adjust to anything on this scale before. Joe:                 Yes, absolutely, Lisa.  You mentioned clinically significant.  When we’re talking about depression or anxiety, clinically significant, does that mean that it’s similar to depression you get outside of cancer? Lisa:                 Yes.  I think that’s a really good point to make, that depression in cancer is the same as depression in the general community, in terms of how it looks.  It can be a bit difficult to tease apart somethings because the side-effects of the cancer treatment can overlap so much with the common symptoms of depressions.  Things like feeling really fatigued, that’s often a side-effect of the treatment, obviously, and it’s also one of the core symptoms of depression. What we tend to look at in worries about the loss of interest in pleasure, rather than whether people are able to do activities because of fatigue.  When we’re talking about whether it’s clinically significant, we’re talking about whether it’s at that level where there are two key criteria, whether it’s at the level of severity, whether it’s actually affecting people’s enjoyment of life, that they’re feeling so down that they’re just stressed all the time and it’s really impacting their joy for life.  The other one would be if it’s impacting on their functioning, their ability to do their normal activity.  If their depression or their distress or anxiety is at the point where they’re having trouble doing their normal parenting roles, or getting themselves to work, and again, this can be a bit difficult to tease out because some of these roles are affected by the cancer treatment.  Yes, if it is at that point where it’s actually having that knock-on effect in other areas of their life. Whereas, I think everyone will have some level of distress when they’re diagnosed with cancer, but a lot of people will find that they’re able to, with support and with time, still be able to maintain a certain level of enjoyment of life and ability to do their normal roles.  Really, what differentiates that clinical level is when it’s actually impeding their level to do that. Joe:                 Yes, absolutely, because, you know, Lisa, one thing that I guess most of us don’t realise is that we need help on a psychological level.  You don’t really think about it, it’s cancer and it’s supposed to be hard.  It doesn’t occur to people to ask for help.  What do you think about that? Lisa:                 My response to that is, just because it’s supposed to be hard doesn’t mean that you have to do it alone, or that it can’t be done without help.  That classical saying, a problem shared is a problem halved.  I think that recognising that this is a hard chapter in your life doesn’t mean that it has to be done on your own, and that it is hard.  There are always ways of making things easier and if you think about other areas of life, where people go through traumatic experiences, you would expect to find those hard too, but you would also expect it to be appropriate to go out and get some strategies on board to help make it a little bit easier.  Yes, definitely.  It’s supposed to be hard, but it doesn’t mean that’s it’s not amendable to change and to make things a little smoother and easier with a bit of support around you. Joe:                 Yes, absolutely, Lisa.  That makes so much sense.  Speaking of strategies to deal with, in terms of self-management and self-help, what can you do yourself as a person who’s going through cancer?   Maybe as a patient, as a cancer survivor, what are some of the approaches you can do to get through it in a better way? Lisa:                 There are a couple of things, first of all is, don’t be afraid to reach out and use the resources that are actually out there, that are available to you.  Some of them are the Cancer Council, all the different Cancer Councils around Australia, they’ve got some great resources on their website.  Some of them are on things like managing your emotions, coping with cancer.  There are also some print-based resources out there, as well.  A lot of these ones with the Cancer Council, you can print out as well.  Depending on what sorts of cancer you’ve got, then a lot of those websites, like the National Breast Cancer Foundation or Prostate Cancer Foundation, they might have some resources as well and really useful strategies for getting started.                         On top of that, though, from the psychological point of view, from where I’ve come from, a lot of the work I do is actually on self-management, so we’ve ended up developing some web-based resources ourselves to help support people that are now fully available to the cancer group, that will guide you through the most commonly experienced issues and then set you on some support strategies and things that you can do yourself to help you manage.  Those are some of the resources that you can use.  Just as general advice, I think that if there’s one general rule of thumb I tend to tell people, it’s that people often make the mistake of assuming that when they’re feeling crap, they make that statement. Once I start feeling better, whether it’s feeling better physically or whether it’s feeling better emotionally, once I feel better, then I’ll start doing more things.  I’ll start going out and seeing my friends again, I’ll start going back to the gym, I’ll start doing a little bit of more activity in terms of going to work.  They have this wait until I feel better before I start doing more.  What we actually know from all of the research out there is that for physical wellbeing, as well as emotional wellbeing, you actually need to address that. You need to start doing a little bit more, just a little bit more all the time, over time.  Not heaps straight away, but you need to do a little bit more in order to feel better.  Don’t wait to feel better before you do more, you need to do more in order to feel better. Joe:                 That’s a fantastic point, Lisa.  I love it.  Yes, that makes so much sense.  That you really have to start the change and keep going, not wait until a better time.  As we know with everything in life, there’s never going to be a perfect time to do anything.  There’s never going to be a perfect time to change jobs, there’s never going to be a perfect time to start a family, there’s never going to be a perfect time to get over cancer, you have to start with it now and make changes now. Lisa:                 Exactly.  Especially for when you’re struggling emotionally, it can be a huge barrier because you think, I’m lousy company, I’m feeling so woeful, I’m just going to drag people down.  It can be really hard to get past that and go, I’m going to put myself out there anyway.  Like everything, the first time is always the hardest, then it ends up being a little bit like dominos, that once you flick that first domino down and get a little bit of activity happening and do a little bit more, it ends up being a lot easier to then keep building momentum from that and that becomes less scary to do more as you go. Joe:                 Cool.  Yes, builds momentum, love it.  That makes so much sense.  In terms of dealing with everyday stress around anxiety, so how do you actually – when you start to make all of these changes – how do you know that you’re making progress?   How do you know that you are getting better?   How do you know that you’re getting a better grip on managing this side of things? Lisa:                 Yes, so coming back to how you asked me earlier about what clinically significant distress looks like.  I know it’s such a clinical term, sorry.  The two things I said there that indicate things are a problem are also going to be the two things that are an indicator that you might be making improvements.  Those are if you feel like you’re able to do those activities without them causing quite so much distress or worry, then that’s one sign that you’re doing a bit more gradually.  Then the second is that how distressed you’re feeling while you’re doing more is starting to drop, as well. It’s those two things, the level of distress, the severity is starting to drop and also the level of activity is going up and your ability to do your normal activities is starting to improve.  I think the key for this is that people have the tendency to either compare back to what they used to be like before cancer and that’s their benchmark and they keep striving for that.  They think, I’m not there yet, I’m not back to normal, I’m still really struggling, I’m not me again until I get back to this level.  Or they focus so far on how far they’ve yet got to go.  They’re comparing back to what they used to be, as well as projecting really far forward and how far they’ve got to go. That they’re not really tracking – okay, compared to one week ago or two weeks ago, what am I doing now that I wasn’t able to do one week or two weeks ago?   Really start to celebrate those small wins as you go, rather than thinking on how far you still have yet to go. Joe:                 Yes, that’s fantastic, Lisa.  It’s all about untangling past, present, and future.  If you start comparing yourself to whatever you did before, years ago, or maybe things where you think you should be, just in general, maybe projected into some imaginary future that doesn’t even exist yet.  It’s all about dealing with the present, right? Lisa:                 Exactly.  Can I just catch you there, as well, because that’s something I spend a lot of time dealing with, is the shorts, people are so good at shorting themselves during cancer.  Part of it is that the media is really great at putting this image about what a cancer patient and a cancer survivor should look like.  People think that unless they actually are that image or are living with cancer in that way, that they’re not coping.  They end up putting out this certain image of themselves about how they should be coping up on a pedestal and then it ends up creating even more distress for themselves when they feel like they’re not attaining that goal. One of the examples that we get a lot of is that the media, the general media, they project this general idea of just be positive, if you’re positive, you’ll beat the cancer, you’ll cope better.  Just think positive.  Often, when people are feeling crap, physically, excuse my technical language there, but when you’re feeling really unwell physically and emotionally, mentally, everything.  To be told that you have to be positive is just yet another short that you’re adding to that mix.  It can seem completely unattainable, then you end up with this worry on top of that, gosh, if I’m not thinking positive, I’m going to have worse cancer outcomes.  The truth of the matter is, no evidence, there’s no research evidence that has extensively looked at there’s a relationship between thinking positively and survival.  It just is not there. Joe:                 That’s a great point.  I propose a new term, we can call it scientifically crap. Lisa:                 That’s right.  We’ve coined the clinical terms, significantly crap. Joe:                 That’s right, Lisa.  You’re exactly right.  You don’t’ want to, as a cancer patient or as a survivor, you don’t want to live up to this hyped up images you see on TV of people conquering cancer and living despite all odds and running around with a smile on your face.  Sometimes you are just down, and its crap and you don’t know what to do with yourself.  What do you think are some practical ways to get things under control?   We’re not talking about just positivity, although, being positive helps, but just getting things under control where you feel you’re going to have more in charge of what’s happening and be in charge of your life? Lisa:                 Yes, if you’re feeling really down and almost at the point where you’re having trouble getting out of bed in the mornings.  I do work with people who are at that level where getting themselves out of bed in the morning is the win.  I was saying, celebrate the small win.  That’s okay, let’s start setting a regular alarm, put that alarm out of your reach and start your day jumping straight into the shower.  It can be that level.  You started the day, you’ve got it underway.  At that same time, you’ve done that two days in a row, fantastic.  It’s about really starting with where you’re at rather than jumping ahead to where you think you should be.  There are the should again.  Start with where you’re at and work out what’s the next step?   What’s the first win?   What’s that first domino that you can knock over to get things started?   It might also be about linking in with your GP or a member of your medical treatment team wherever you’re receiving your cancer treatment from, and really linking into them and saying, if I’m really struggling, there is a well for anti-depressants as well. Don’t be afraid of actually getting all the resources on board because we’ll often tend to say when you’re really struggling with distress and depression, it’s like being at the bottom of a well.  If you imagine you’re at the bottom of the well and there’s a ladder on the side of that well but it’s out of reach, the role of the anti-depressants is to put you on the ladder.  It gives you that first step.  Then from there on in, it’s your own efforts that gets you out of the well.  It doesn’t mean you have to be on them forever.  At the same time, there’s definitely a role for anti-depressants for people who are really struggling even getting those first early wins on the board. Joe:                 Yes, so anti-depressants can really help someone to make that step forward, is that right?   You can stop that when the right time comes? Lisa:                 Yes, I guess one way of thinking about it is that for some people, even they don’t have the capacity when they’re feeling so low to even focus on concentrate on work.  It’s so overwhelming to even think, what’s one thing I can do for myself.  Whereas, once you can get those anti-depressants on board, it might just create a little bit more of a foundation to start building on.  That’s the role of them, they’re not happy pills, they don’t magically fix everything, but they just create a little more stability so that you can build upon it and work and put the hard work in yourself to then be able to create a good, stable framework for keeping yourself well, ongoing. Joe:                 That’s good to know, Lisa.  The other thing I wanted to talk to you was, the fact that cancer can be a real test for friendships, for relationships.  From the perspective of someone who had cancer, you don’t want to look weak but at the same time, like you mentioned, you don’t want to also put pressure on people talking about your problems all the time.  Also, if your friend or a partner, you also don’t want to say the wrong thing or do the wrong thing.  It’s confusing.  What sort of advice do you have on that front? Lisa:                 Yes.  I hear that a lot, there’s a common statement that I tend to hear about.  That when people are going through cancer treatment, that they find out who their true friends are.  That can pad out the deadwood or the driftwood and that they’re really surprised that some people who may not have been close friends before they were diagnosed with cancer, they really step into the foreground.  While other people they would assume would be their key support people are the ones who end up stepping into the background and fading away.  They may not even hear from them again. That can be incredibly hurtful, understandably.  The thing I would say, it’s really hard when you’re going through this and you have a level – you need your support group around you.  It’s where possible, be kind and I think what people have to recognise is that cancer activates all sorts of release and fears for everyone.  It really does raise awareness of mortality, not just in the person going through the cancer but for everyone.  When you hear that, you never know what someone else’s back story is.  Even friends you know really well, maybe they lost someone to cancer and never actually disclosed. Hearing that your diagnosis has brought all of that back up and re-triggered them.  You don’t actually know what someone is going through themselves.  There might be a reason why they haven’t been able, legitimately able to be there for you.  Even for those who don’t have that backstory, cancer is scary.  It is scary.  As you said, they may not know how to say the right thing.  The more time that passes before they’ve actually come and said something to you, the harder it is to then go on.  Gosh, it’s been one month, and I should have been in contact by now.  It’s been two months now, my goodness, I’m being a terrible friend.  That ends up becoming the barrier, that they haven’t actually been in contact becomes more and more challenging for them. In terms of how to overcome it.  Two things.  One is, where possible, try not to, even though it’s hurtful, try not to personalise and think it’s about you.  It’s actually about what’s going on for that other person.  That’s why they haven’t reached out.  The second thing is, I think it’s about if you are the support person and you want to know what’s a useful starting point and you don’t know what to say, that’s actually the starting point in saying, I’m so sorry that you’re going through this, I want to be there for you but I’m finding this really hard.  I don’t know what to say and I’m worried I’m going to say the wrong thing. Then you might use that as the starting point, what are things that could be helpful for you, as the person going through cancer, what do you need?   What can I do to support you?   Instead of fear of you’re going to say the wrong thing, use that as your platform.  Use that as your opening statement.  I wish I knew what I could say right now, I wish I knew what I could do.  Can you help me?   What would you like from me as we go through this together? Joe:                 That’s exactly right, Lisa, because that’s you’re being proactive and you’re taking the first step and you’re saying, it’s okay to say whatever. Lisa:                 Yes, that’s right.  I think most people would say that, they would far rather someone say, not quite the right thing but even the wrong thing, but they’re actually there and present, than someone’s fear of saying the wrong thing, making completely absent from your life, while you’re going through a traumatic time. Joe:                 Yes, I completely agree with you.  Also, on a similar subject, when it comes to caregivers and the partners or parents or children of someone with cancer, because they often have to deal with a lot, they have to sometimes not only support the person who’s going through cancer, but they have to go on with their daily life.  If it’s stressful for them, what can you do as a caregiver to help the person who’s going through cancer or building a life after cancer, of maybe even helping yourself? Lisa:                 Yes, I think that’s a really important point because we actually know from the research that caregivers and loved ones have the same level, if not higher levels of distress as the person that’s going through cancer. Joe:                 Wow. Lisa:                 Yes.  They don’t have nearly the same level of support around them because the focus is on the person with cancer.  It is actually about recognising and saying it’s okay for me to be struggling right now.  When I worked with people with cancer, I’m always saying, cancer is actually a family illness, it might be one person that’s got the cancer in their body but it’s affecting everyone in that household.  It’s affecting everyone under the roof.  Just because you don’t carry the cancer in your body, doesn’t mean that it’s not affecting your in just as many ways as the person who’s going through it. It’s about really trying to normalise and validate that.  It’s actually a struggle for everything, whether it’s children, whether it’s young children, adult children, as well as partners.  Whoever is in that caregiving role, and often it’s spread across everyone in that family unit, they will actually need some resources to help them through.  If you are a caregiver, don’t be afraid.  A lot of the time, if there’s a psychologist or a mental health clinician attached to wherever your loved one is receiving their treatment, they will generally make those same services available to the loved ones as well.  It’s not just necessarily for the person with cancer.  Also, there are groups like, look up the website, Carers Australia, they often have resources and strategies as well listed there.  That’s a good starting point, too. Joe:                 Cool, thank you, Lisa.  Speaking of resources and strategies, you know that I love finding my way because it’s such a great tool.  I first talked about it from Bogdan and it really sounds like it’s been a lot of years in the making.  It sounds like your life’s work.  I think it started as a self-help manual, is that right? Lisa:                 That’s right.  This now is a 13-year journey for me. Joe:                 Wow. Lisa:                 As you say, it has been my life’s work.  I started in this area as a new PhD student and I was really aware that while we’ve been talking about accessing supports, for a lot of people, there are legitimate reasons why they can’t access face-to-face support, whether that’s with a psychologist, a psychiatrist, a social worker, any mental health clinician.  There are many people where geography in Australia gets in the way.  There’s not always a handy psychologist that knows about cancer around the corner.  Yes, for people who live rurally or remotely, that’s a really challenge for that group of people. It’s also as much as they’re trying to make headway with this, there is still a stigma associated with going and seeing a mental health clinician.  That can be another thing.  There are a lot of people out there, who even if they’re not concerned about stigma or geography, they just have a personal preference.  They would rather deal with this on their own, in their own time, in their own space.  When they’re ready and do it through their time that way.  They’re not really interested in seeing a psychologist for it.  There’s a whole heap of reasons why we ended up going down this road. They don’t want to access traditional services, but at the same time, they’re still struggling, and we know that their medical outcomes, as well as their psychological outcomes will be worse if they don’t tackle.  That’s something I don’t think I make clear earlier why people ought to do this, that outcomes like medical as well as psychological are worse if you don’t get in and treat that distress.  We need to come up with a new way, a new avenue of trying to help people and get these same tools that we’ve been providing with them, working with them face-to-face, we need to get these tools onboard in a different way.  Here we started with my PhD doing that in a self-help book.  Just with women with early-stage breast cancer to start with, we found that was really effective in helping reduce the stress and improving coping and quality of life.  We then from there with ongoing research adapted it into an online program for all types of early stage cancer, so that’s cancer being treated. Now, we’re at the point where we know that’s been really helpful and that’s the one that’s now freely available that anyone can access.  Now, we’re at the point of trying to adapt that for women with advance or incurable breast cancer, with the aim, longer term, again, of sending it out to other types of cancer, as well, of advanced cancer. Joe:                 Yes, fantastic, Lisa.  Love it.  I guess where I’ve seen the commonality here is that a lot of the challenges that people go through are universal whatever the type of cancer, is that right? Lisa:                 That’s exactly right.  Yes, we often think that the findings in a lot of research and one of the criticisms you’ll find is you’ll often start with breast cancer, to try things for the first time because women with breast cancer are pretty good a reaching out and making use of resources when they’re made available.  There’s also a lot of them.  It’s the most common cancer that occurs for females.  We’ll tend to often trials things for the first time and see if it works there, then hopefully we might be able to extend that out and make it work for other types of cancer, people with other types of cancer. Yes, you’re exactly right, we have found that it doesn’t matter what type of cancer you have, that some of those, especially in terms of the psychological and emotional issues, it can.  There are enough commonalities across and universal experiences across the different types of cancer, that it’s better to create a platform for everyone.  Then you can add additional resources to make them cancer specific, depending on what your unique cancer type is and some of the more particular needs that arise there. Joe:                 Fantastic, Lisa.  How does Finding My Way, how does it work? Lisa:                 Yes, so Finding My Way, it’s a six-week program.  As I said, it covers the most commonly experienced issues.  We developed this in consultation with people with cancer so that we knew up front what the issues were, as you probably guessed, I’ve worked with people with cancer for a long time, too, so you’re bringing in that kind of knowledge, as well.  The six modules to start with.  It’s on one of the issues that come up straight after diagnosis and communication with members of your medical team and making decisions about your treatment.  That’s the initial, you’ve just be diagnosed, how do we navigate this?   That’s the first module.  Then modules two, three, four, and five are all the most common issues that happen while you’re going through your medical treatment. Those are things like managing your physical symptoms, things like pain, nausea, fatigue, even though they are physical symptoms, we know there’s a really strong relationships between how you’re going emotionally and exacerbating those physical symptoms.  Some of the times, those strategies you use, there’s a good solid evidence base for reducing pain symptoms, purely through using some psychological strategies for example.  That’s where we come in with that second module. Then the third module is on managing emotional distress.  That’s some of the issues we talked about earlier, about anger and anxiety and depression and fear and worry.  It’s been told the strategies on managing those.  Then the fourth module on managing things like body image concerns and changes to the way you see yourself, with your identity.  Even though people might have always grumbled about having to do the school drop-offs and being the taxi driver to their kids, when they’re going through treatment, they might actually suddenly feel upset that they’re no longer able to do those roles because of feeling so fatigued and whatnot. We provide strategies for managing those sorts of issues.  Then the fifth module is really on managing those changes to the social support network we were talking about and the impact on partner and the impact on children, as well.  Those topics that we mentioned earlier.  Then the six and final module is what to expect as you transition out of the treatment and into what we call the survivorship period.  What are some of the unique challenges that might happen in that stage?   Things like managing the fear that the cancer might come back, that’s a really commonly raised one that we hear about and tools to help people manage that as they go through. Joe:                 Fantastic.  What’s your favourite technique or strategy out of Finding My Way? Lisa:                 That’s like asking me to choose what’s my favourite child.  They’re all important. Joe:                 There’s always one you love the most. Lisa:                 No, there’s not.  You’re not catching me out.  I think it really speaks importance that to get through cancer treatment, you really need to tackle all of these things.  It’s a bit like a stool.  Imagine a three-legged stool.  As soon as one of them is actually starting to get a bit wonky, the whole stool become unstable.  You do need to be trying to look after your emotional, your physical, your social wellbeing altogether while you’re going through treatment.  You will get better medical outcomes because of it.  We know that people stick to their treatment better, they stick to it and attend to all of their appointments like they’re meant to.  They have less severe side-effects when they’re going through it, if they can actually get some of these strategies on board. Joe:                 Cool.  I’m still going to put you on the spot and try to choose one. Lisa:                 The one module out of all of them? Joe:                 Yes. Lisa:                 I think there are two.  Can I narrow it down to two? Joe:                 Perfect, let’s do it. Lisa:                 Out of the two, I would say if you could get the second module on manging your physical symptoms and strategies on board to help to reduce the severity of those and then the module three on managing the emotional distress.  I think if you had to start with two, those would be the two critical ones to start with.  Then the rest will support and build on that. Joe:                 Okay, perfect.  Lisa, if someone wanted to find Finding My Way, what would you do? Lisa:                 Yes, you just have to go to the website, and that’s: Findingmyway.org.au.  Finding My Way is all one word.org.au.  You can also find from the Cancer Council an essay on their website.  There’s a link to it.  I think the most direct way is just to go straight to: Findingmyway.org.au. Joe:                 What a fantastic resource.  Thank you so much for your time, Lisa. Lisa:                 Thank you.  That was great.  

It’s tough to open up and talk about your worries during cancer, even with people you trust the most.  That’s where someone who is outside of your immediate circle can help – they don’t know you and there is no agenda. To shed some light on why a qualified psychologist can become your greatest ally in dealing with  worries and uncertainty that come with cancer, I’m talking to Maria who heads up Clinical Psychology department at the Peter MacCallum Cancer Center in Melbourne. Maria has a really unique way of relating to people and she shares how you can find the right psychologist for you! Here is what we cover in this conversation: Internal barriers that prevent us from asking for help Why cancer is more than a physical illness What to expect from a qualified psychologist How to screening your therapist The impact cancer has on you and those you love Mindfulness during cancer: is it worth it? and much, much more! Links Dr Maria Ftanou at Peter Mac Can-Sleep: Improving night-time sleep problems Psychosocial Oncology Program at Peter Mac Smiling Mind mobile app Headspace Meditation mobile app Episode 023: Getting The Support You Need, On Your Terms Full Transcript Joe:                 Maria, one of the things that really hits someone over the head is a cancer diagnosis, it’s a huge shock when it happens.  How do you make sense of it all, how do you come to grips with it? Maria:              Yes, I think once someone is diagnosed with cancer, as you said, it is a big shock and people go through a range of emotions.  They feel anxious, they feel worried, they feel overwhelmed about the cancer itself and what lays ahead with treatment.  I don’t think there is one path forward or one simple solution.  People adjust in their own time and pace.  Some things that are usually helpful is talking about how one feels, expressing it with family and friends and other peers. For some people, getting information and getting the right information from reliable sources is very helpful.  They feel empowered and know what to expect.  For some people, having too much information is very overwhelming as well.  For other people, it’s about finding the right team that they trust and want to work with and they feel can help them with their journey.  Other things that are important is making sure that throughout this experience that you maintain things like looking after yourself, catching up with the people that you love and care about. Trying to include, as the hospital take over your diary, making sure that you have some things that you really value in it and continue with your leisure.  Exercise, you hear people talking a lot about exercise through all of this, but if you’re able to be fit enough, it’s really encouraged.  It helps people relax, it helps clear the mind, it’s good for the body.  Those are some of the tips that may help. Joe:                 Yes, absolutely.  In terms of how you end up seeing people, I think one of the challenges that people have, I know that I had, with cancer, you often don’t realise that you need help, psychological help.  You know it’s supposed to be tough, you’re going through a treatment, you’re facing all of these issues, you’re thinking about your own mortality, you’re thinking about what’s going to happen, all this unknown.  I think a lot of folks that I speak to, and myself included, they don’t really realise that they need help.  How would you say that someone should go about this and to say, “Well, I should really talk to someone, to a professional?” Maria:              I think asking for help is really difficult.  I think that people often see cancer as a physical illness.  Really, it is both, it’s a physical illness and emotional.  It impacts on you emotionally.  Irrespective of prognosis.  It changes people’s lives.  People are often afraid to ask for help for some of the reasons that you said, they’ll be often embarrassed to ask for help because they feel like they should be coping, they feel that they should be resilient, they feel that there’s a stigma attached to speaking to someone.  They feel that they don’t want to burden their healthcare professionals.  They feel that they’ve been given treatments to save their lives, and they feel that this is secondary. Ideally, what I would like to see, and we’ve come a long way, is that the emotional impacts of cancer are seen as part of routine care, and people are offered supports, and that people can feel that they can ask for help, or that they’re actually offered.  You’re going to go and have surgery now but also, we would like you to speak to the psychologist or the social worker to talk about how this is impacting on you and your family. I think it’s also really difficult to know when to ask for help.  Yes, she said cancer impacts on your emotionally, but sometimes when you’re not sleeping, when you’re overthinking things, when you often can’t see any hope for the future and stuff like that, that’s probably when it’s really hard and you probably should have sought help earlier. It’s people, friends and family, will let you know that perhaps you’re not your usual self at the moment.  To check in with friends and family.  They might be the first phone call.  To know that it’s okay to ask for help and that it’s a normal part of care. Joe:                 Yes, that’s a great point, so that people who love you, they’re the judge to know that you’re not coping as well as you’d like.  Tell me, Maria, how does it look like?  I think if somebody is wondering what does professional help look like?  What would be some of the things that you’d talk about?  How would someone make sure that they don’t feel awkward or overwhelmed when they see someone like yourself? Maria:              Yes, it’s important to know that seeing a psychologist or a psychiatrist, the first sessions are often very difficult.  Change doesn’t happen also immediately.  It’s very personal because the psychologist will ask you questions about your cancer and how you’re going and its treatment, and they’ll ask you to talk about your fears.  They’ll ask you to talk about the side-effects of the treatment and how they’ve impacted on you and your body.  They’ll ask you to talk about fears of progression or recurrence, or fears of scans.  They’ll also ask you some personal questions about your life, to get to know you and your family and any other traumas that may have happened previously. They’re really trying to get to know you, and they’ll talk about your own coping styles and your resilience.  One of the main things that’s really important in the therapeutic process is that the person is made to feel comfortable and not judge, that you’ve got a rapport with the psychologist, and the therapist.  I think that’s probably one of the key ingredients.  People feel once they’ve come in that their therapist is genuine, and they’ve got a good rapport and that they can trust them.  They’re probably going to have a more successful relationship and get their needs met.  It might take a couple of goes to find the right therapist, as well. Joe:                 That’s such a great point, Maria, because I think with a lot of many things, even when you’re seeing a general practitioner, or even a plumber, you need to find the right person for yourself.   I think most of us, I think especially if you’re going through a medical system, you often feel like I can’t ask a second opinion, or I can’t go to see someone else.  Sometimes the person just may not be the right match for you. Maria:              Yes, exactly.  I think it is important to almost screen your therapist before you go and see them.  You might want to ask them questions like, what is your experience with working with people with cancer?  What kind of therapeutic techniques do you use?  You might want to have these conversations before you’ve gone in and seen them.  Once you’ve given it a go, you might ask yourself, can I trust this person?  Do I feel comfortable in talking about what’s really bothering me? Do I feel that they’re genuine with me?  Then you can establish whether they’re the right person for you.  Psychology is hard, and therapy is hard.  It’s not an instant result because you’ve got to process things that are really difficult.  It’s important to give it a go, but if you feel that it’s not the right person for you, or you’re feeling you’re being dismissed or not heard, see someone else. Joe:                 Yes, that’s actually a fantastic point, Maria, because I think a patient or a cancer survivor, giving them the feeling that they’re in control is very important because with cancer, you’re just going to feel so out of control with a lot of stuff.  There’s treatment, there are all these appointments and tests, you don’t really know what’s going on.  The other thing that I think comes up for people is, how do you open up and ask difficult or awkward questions?  There’s a lot of impact on normal life when you go through treatment or after treatment, as well.  These things that affect whether people will be able to go back to work, or whether they’ll be able to have sex, or whether they’ll be able to do all sorts of things.  What is your advice on that front? Maria:              Like, how to go about asking these questions? Joe:                 Yes. Maria:              I think a good therapist will ask those questions.  You don’t have to ask those questions, but a good therapist will give you the opportunity to talk about the impact of cancer on your relationships, the impact on your sex life, the impact and how you feel about your body going from a healthy body to perhaps not being so healthy now, or perhaps not being so independent.  Some of these difficult questions you won’t have to answer them if you don’t want to, but a good therapist will provide you with the opportunity to investigate and explore those issues. They will provide you with an opportunity to even think about them differently.  I feel sometimes there’s a lot of pressure on people with cancer to feel that they have to know everything and have to ask for everything, as well.  Whereas, I think we can guide that conversation a little better and help people explore it. Joe:                 Yes, absolutely.  What sort of approach do you use?  I know you must tailor it to people, as well, but what sort of approaches do you typically consider when you’re working with someone with cancer? Maria:              Yes.  A lot of the work we do, we do a lot of counselling and getting people to tell their narrative and tell their experience.  People are experts of their experience.  Making sure people get a chance to explore it and tell their story.  We use a lot of evidence-based techniques.  We use cognitive behaviour therapy which looks at the way you think and feel and changing behaviours and thoughts that perhaps may or may not be making you feel as good as you’d like to feel.  We use narrative therapy, we use acceptance and commitment therapies, we use a little bit of mindfulness.   Some people with perhaps more advanced disease, we use more existential psychotherapies, as well. Joe:                 Cool.  You know, Maria, cancer is, I’m sure you come across it a lot, like cancer impacts a lot on relationships, on friendships, that can be tough for people and sometimes people around you don’t really know what to say or do because they don’t want to offend you or say the wrong thing.  What advice do you have for people on that front, on how to talk about cancer with their friends, with their family, with their co-workers?  How to ask for help or get supported in the way that you want to be supported? Maria:              Yes, cancer impacts on the person and it impacts on their networks of friends and family.  I think a lot of it is because families and friends sometimes don’t know what to say and do and they’re also feeling the emotional impact, the stress, the sadness, the grief of watching a loved one going through cancer.  They perhaps don’t know, as you’ve said, what the right questions are or what the right things to say and do is.  What they tend to do sometimes is to avoid it altogether. Joe:                 Which is the worst thing you can do. Maria:              Not talk about what’s going on.  Some relationships grow a lot strong through this, but it’s important to have open communication.  Acknowledge the changes in the relationships, acknowledge the reversals of roles, acknowledge that someone is perhaps unable to do as much as they have been able to do, and the partner is doing a lot more.  Acknowledge the changes in intimacy.  Be able to grieve some of these changes.  It’s important, some friends also want to provide lots of support, but they just don’t know how to.  It’s important to direct people in the kind of support that you want. For example, many people might bring meals, but what you’d really like is for someone to mow the lawn.  It’s important to perhaps come up with a list of what would be supportive and what isn’t supportive, and delegate tasks to people to help you through.  Some people won’t be able to support you in the way that you want to.  That can often be quite disappointing and sad.  It’s sometimes really important for the person to focus on the support that’s there and work on those relationships that make you feel better.  Some relationships might come to an end as well through this. Joe:                 Yes, absolutely.  I think that it’s such a great thing to acknowledge, that it’s okay that relationships can change, as well.  Sometimes you feel that it’s a little bit too much and that it’s not happening the way you want it to, that’s just part of life.  Just maybe cancer accelerates certain things, or maybe shows up things that maybe were there before but were beneath the surface, if that makes sense.  Maria, you also touched on the partners of people with cancer and changing roles. There’s often a lot of pressure on the partner, as well, because not only are they supporting someone through cancer, but they have to go on with their normal life and do the things that they always do.  Do you think that there’s a lot of pressure on the partners, as well? Maria:              There is a lot of pressure on the partners.  What we have found, and we’re getting to understand more of, the partners, their distress often parallels the patient’s distress to it because they have all of these additional roles.  Sometimes busy hospitals focus on the patient, we don’t focus as much on the partner and offering them support.  Partners do go on and they do maintain households.  They look after the children, they work, and they want to be a loving and caring, supportive partner, as well. What I do encourage partners to often do is to make sure that through this, that they find time for themselves.  That it’s okay for them to go out with some girlfriends or their male friends and do something with their peers.  It’s okay to take a break from this, as well.  As you know, treatments take a while, as well, it’s important to invest in one’s self to make sure that they don’t burnout and that they’re there. Joe:                 Yes, that makes so much sense, Maria.  I know you touched on mindfulness before.  What’s your take on mindfulness? Maria:              Mindfulness we’ve seen a lot, it’s become quite popular a lot in the past two decades in particular.  I think there are mixed results in the answer setting, mindfulness has been very popular in treating depression and anxiety and in clinical populations.  We’ve seen some fantastic work that’s happened with Linda Carson’s group in breast cancer, in, again, helping with anxiety and depression.  There are mixed results, perhaps with people with prostate cancer and the studies there.  My take, for some people it can be really helpful. For some of my patients, don’t give me all that meditation, all that mindfulness, stay away from it.  You work with the person and what they’re more likely to take up.  There are some really good mindfulness resources, such as if people want to have a try, the headspace app.  Which teaches people do to ten minutes of mindfulness for ten days, they can get a trial of it and see if it works for them.  There’s the smiling mind app, as well, which is an evidence-based app.  I think it’s just be really mindful of who we give mindfulness to. Joe:                 That’s a great point and these are great resources.  I think that would be really good for folks to investigate because we hear so much about mindfulness, but no one really knows what that is or how it works. Maria:              Mindfulness was first introduced by Jon Kabat-Zinn, into the health settings.  He developed a mindfulness intervention called: Mindfulness-based stress reduction.  Which teaches you basically to pay attention on purpose to the current moment and being unjudgmental about that moment.  It really teaches you to be focused about what’s going on in your mind right now, and to be aware of that.  They use a range of techniques. Jon Kabat-Zinn’s work was based in hospitals where people felt that the medical treatments were not improving and then they had to learn to accept some of these illnesses.  Then he developed this technique and it has been effective for things like pain, as well.  The jury is still out about its full effects in cancer. Joe:                 Yes, Maria, you’re making me think about the challenges associated with creating psychosocial treatments or interventions.  That’s probably what you would call them.  From the perspective of different people’s needs, how people of different age, sex, different preference, some of them might respond to certain things and some of them will respond to completely different things.  I guess that’s an individualised approach, right?  That you would tailor it specific to the person? Maria:              Yes, absolutely.  You’d tailor things to people’s individual needs and individual personalities.  It’s also, what I find in the work that I do, that people already have a whole bunch of coping strategies that they’ve already used, that have worked in the past.  Cancer has come along, and people feel overwhelmed and sometimes it’s about finding those coping strategies that these people have already used to deal with other things and bringing them back into the now. Joe:                 That’s fantastic, that’s such a great point.  You’re helping people discover things that they already know that worked for them. Maria:              Exactly.  When we get really stressed, we give up on things that are usually good for us.  Sometimes when people are really, really stressed, they might give up on exercise, they might give up catching up with their friends and family or doing something really good for themselves or learning something new.  You just help people to get back on track.  When was the last time you caught up with a friend and didn’t talk about cancer? When was the last time you had some fun during this time?  It’s about reintroducing some of the things that they may have stopped doing.  If they had played an instrument, they may have totally stopped playing it, but the instrument gave them a lot of pleasure.  We’re trying to reintroduce some of those activities that give them value and meaning. Joe:                 Yes, that’s fantastic, Maria.  Also, I think it’s a very powerful to talk to a psychologist or a counsellor, someone who is actually removed from your life, someone who is not a part of your family or a friend, of whom you have history and you have this certain image.  I think it would be incredibly helpful to talk to someone like yourself, where you don’t have any agenda or something like that, you can just talk to them and find an approach.  It’s almost like a stranger on a train, does that make sense? Maria:              Yes, it does make sense.  I’ve never been called a stranger on a train as a therapist. Joe:                 You can say anything, you know? Maria:              Yes, that’s why I feel people come to us, they feel like they can say things and just say it how it is for them without filtering it out or worrying about the impact that it’s going to have on their families and their friends.  That’s why rapport is so important, that we need to make sure that you’re comfortable with it, because that’s the ultimate aim so that you can say things that are on your mind and not fear that you’re going to be judged or burden the therapist or anything like that.  The therapist has some skills that can help you work through it and guide you along the way to work out and process the issues that are going on for you. Joe:                 Yes, absolutely.  Maria, many of us have problems with sleep after treatment, what are some of the steps that you can follow to have better sleep? Maria:              Yes, sleep is a very common problem for people with cancer.  My team, in collaboration with the Royal Melbourne and the Royal Women’s Hospital, we developed a step care program called: Can Sleep for people with cancer.  About 60 percent of people with cancer have sleep difficulties.  That could be during treatment or post treatment.  The first step is to try and work out what’s causing the sleep difficulty.  Is it that you’re worried about your cancer or is it some of the side-effects of cancer, or is there some other medical thing that’s causing the sleep problem?  Such as sleep apnoea. You do need, initially, before you go into self-management, try to work out what that is.  If it is more of an insomnia, there are lots of things that you can do.  One of them is really trying to get – people have heard about the sleep hygiene technique, so using your bed for sleep alone, not having caffeine too late at night, if you’re in bed for more than 20/30 minutes tossing and turning to get out of bed and go into another room and do a quiet activity.  When you get up in the morning, one of the really important things to do is to go outside and have some natural light.  That kickstarts your body clock again.  Exercising in the morning is also very helpful. Joe:                 Maria, as something that comes up a lot for anyone who’s been through cancer is the fear of cancer coming back.  What would you recommend in terms of dealing with it?  Trying to keep yourself away from this fear and anxiety about it, and trying to focus on your normal day-to-day life? Maria:              You’re absolutely right, many of people with cancer fear that, it’s one of the most common concerns, that fear of the cancer will return of progress to another part of the body.  It’s a normal response to having a cancer diagnosis.  For some people, this fear of cancer recurrence can be very debilitating, they’re constantly waiting for the other shoe to drop, they feel like they’ve got a shadow following them.  They’re constantly waiting for something bad to happen.  It can really interfere with their quality of life and their ability to make plans for the future.  It can interfere with their relationships somewhere. This fear can often be quite debilitating because people may stop coming to appointments because they’re fearful of what the doctors might say, so they might avoid the medical professional, they might seek increased scans, which exacerbates their anxiety as well.  The fear of cancer recurrence has also been strongly associated with depression and anxiety, and a poorer quality of life.  What I recommend is knowing your triggers, knowing that perhaps before a scan, you’re going to feel it more.  Before an anniversary, you’re going to feel it more.  If you notice a different ache and pain in your body, you’re going to feel it more.  Know your triggers. Then have appropriate medical information.  How often?  What is likely knowing your risks?  What is the likelihood?  When is it appropriate that you seek help?  How often do you need to be checking in getting screenings?  Getting the right information from your medical team.  Having the right supports in place also, talking to your medical team, your friends and your family about these fears, but also talking to your peers.  I think there are some really good peer support groups, that people could share some of these. Once you’ve spoken and you’ve heard, people can kind of go, okay, it’s okay, it’s just a fear, it’s not actually happening at the moment.  That can be very helpful in making sure that you continue to do your self-care.  Things like we just spoke a bit about earlier, doing things that you enjoy, eating well, exercising, trying to get a good night’s sleep are essential to looking after your body and making your body feel better, and doing things that help manage the worry.  I think we spoke a bit earlier about worry time.  There are things like relaxation that you can also do, progressive muscle relaxation too, to calm the body and the mind.  Those are some of the strategies that could be helpful. Joe:                 Yes, fantastic.  Thank you so much, Maria, for your time. Maria:              Thank you.

Today, I’m super excited to be talking to Ben Smith.  Ben is based at the University of New South Wales, in Sydney.  He specialises in developing online tools to deal with the mental side of cancer that give you control over the support that you get. Ben also has some fantastic advice on dealing with the fear of cancer coming back, on where you can turn to for professional help, and where cancer caregivers, what can they do to stay sane during this crazy adventure and much, much more.  There are so many great actionable takeaways from our conversation today that I promise you you’re going to love it. Here is what we cover: Why we don’t ask for help during cancer How to get the support you want through online interventions Where you can turn to for help (face to face and online) How to deal with fear of cancer recurrence The importance of a diverse team supporting evidence based outcomes Carer’s roller coaster of emotions and where to get help and much, much more! Links e-TC Express Ben Smith (Cancer Council) Australian and New Zealand Urogenital and Prostate Cancer Clinical Trials Group Conquer fear: protocol of a randomised controlled trial of a psychological intervention to reduce fear of cancer recurrence Mindful Meditation for people with cancer Cancer Counselling Professionals » Find a Counsellor Find a local support group – Cancer Council Victoria Living Well After Cancer program – Cancer Council NSW CanDo App Help For Cancer Caregivers Emily McDowell empathy cards Finding My Way PROMPT-Care Episode 007: How To Use Your Inner Resources To Better Deal With Cancer Full Transcript Joe:                Ben, when it comes to cancer, like most of us don’t realise that we need help on a psychological level.  I know from personal experience that it just doesn’t occur to you to seek help, because it’s cancer, it’s supposed to be hard, you know? What’s your take on that? Ben:                 Well, there’s no doubt that cancer is hard, I can’t take anything away from that.  There are definitely ways that it can be made easier.  I think people really shouldn’t be afraid to ask for help.  As you say, a lot of people don’t necessarily think to do that because they just feel they have to tough out what is an inherently challenging experience.  I think, though, in your case, as is typical of a lot of men, they seem to want to be particularly stoic and particularly reluctant to seek help.  Certainly, something that I saw in my PhD, which was focused on men with testicular cancer.  Although, two thirds of those men reported having unmet needs when it came to support for getting through their cancer experience. A lot of them were very reluctant to actually go and ask for that help, themselves, or perhaps, yes, it just didn’t occur to them.  I think what that highlights is the importance of something that’s becoming increasingly common in management of people affected by cancer these days, which is something called screening for the stress.  There are a number of projects happening around the world, and one here in Australia called the Adapt project, where they’re trying to implement routine screening for the stress across the cancer trajectory.  They use a very simple tool, a distress thermometer, along with a checklist of items that people may be struggling with.  That’s done at various points throughout their treatment and follow-up. It helps pick out the people who are struggling a bit and what issues they’re struggling with and it helps, I suppose, the caner care team know what issues they can be helping those patients with.  As you say, sometimes the people, themselves, don’t realise that clinicians aren’t particularly good at recognising when people need help either.  We need ways to routinely being able to identify people who are needing help. Although, it’s important to acknowledge that not everyone who is distressed as a result of cancer will want help.  Actually, there’s been studies that have found that the majority of patients actually decline help.  We need to give people space to manage their distress how they want and to make them realise that help is available if they need it. Joe:                 That’s so fascinating that you talk about this tool.  How does it actually work, is it like a questionnaire and it’s like a self-assessed questionnaire that you fill in, say, in front of your specialist? Ben:                 It can be administered in a number of different ways.  In some cases, or in some centres, it’s just done online or there might be a touch screen, for example, when they turn up to the waiting room where they can complete it.  In some cases, it’s administered by a member of the cancer care team, in other cases, it’s done online, at home.  As it’s done in a project called, Prompt Care, that is running here at my centre.  There are various ways of doing it.  I think my personal opinion is that we need to give patients or people affected by cancer space to honestly report on their levels of distress and the symptoms that their experiencing. Which is probably best done in the comfort of their own homes.  I think a lot of cancer patients are reluctant to bring up issues with their treating team sometimes, because they don’t want to seem ungrateful for what the doctors have done for them, and like they haven’t done a good enough job kind of thing.  Everyone with cancer is very appreciative of the care that they get, so they don’t want to do anything to make it seem like they’re not. I think the really important thing is once, however those questions are asked, the follow-up, there needs to be an action based on those questions on behalf of the care team.  Those results need to go to the care team and appropriate actions and referrals need to happen after that. Joe:                 Yes, Ben, that sounds like a great tool.  Let’s say I’ve used a tool like that to understand that I am struggling with cancer and it’s all a bit too much, so where do I turn?  Do I look for a psychologist, a psychiatrist, a counsellor maybe?  How do I know they’re going to understand where I’m coming from as a cancer patient or a cancer survivor? Ben:                 I think it all depends on how much you’re struggling and your preferences regarding what type of help you’d like and your access to that help.  There are a lot of different sources of support, that I suppose range in intensity.  A great first-base or first port of call is the cancer information and support line, which is: 13-11-20 helpline, run by a Cancer Council in each state.  Then by calling that line which is accessible to anybody if they’re affected by cancer, whether it be someone who’s a patient or survivor or perhaps even someone who’s caring for one of those people, you can speak to specially trained people who are often registered nurses or counsellors to get some specific advice regarding the issues that you’re facing as someone affected by cancer. That’s obviously accessible to anybody who has a phone, so that’s great.  I suppose another person who you can turn to is your GP.  I think as a young guy, I didn’t really have a regular GP that I went and saw until a couple of years ago.  I think it’s a really good think to have because a good thing about someone like that is a GP who you see regularly knows you, but they also know the healthcare system, so they can help link you in with any support that you need. For example, if you go and see a GP now, you can get what’s called a mental health care plan, that basically means that you can have several sessions with a psychologist, subsidized by Medicare, which is great.  I suppose if you’re looking for cancer specific advice, you can go, and you can speak to your treating oncologist, your cancer centre and ask for a referral to a psychologist, or it might be a psychiatrist, or even a social worker or someone like that, if you’re after more practical help at your treating centre. The downside to that is that a lot of people who have had cancer don’t like to go back to the – if they’re through their treatment and it was really tough, they don’t necessarily want to go back to where that all happened, which brings back a lot of negative memories.  You can look for cancer professionals in the community.  There’s a great organisation called: Cancer Counselling Professionals, which enables you to search for people who have got a specific interest or training in counselling people with cancer.  You can search by postcode and find out who’s around.  You can specify the type of help that you’d like, as well, like, for example, whether you’d like to speak to someone that’s a psychologist or whether you’d prefer to speak to a psychiatrist or you just want a counsellor, you can specify that in your search, as well. Finally, the last option I suppose is things like online self-management type interventions, where if you don’t feel that you want to speak to a face-to-face professional, and a lot of people do prefer to manage their concerns on their own or just perhaps with the support of their family and friends, then there are a number of websites now, depending on the type of cancer you have or the stage you’re at, where you can seek that kind of help. Joe:                 Yes, that’s fantastic advice, Ben.  Let’s actually dig into that self-management and self-help part a little bit.  What can you do, yourself, as a cancer patient or a cancer survivor or a carer, if you’re caring for someone who has cancer?  What can you do and what are some of the good resources to check out? Ben:                 Yes, I suppose as cancer, as we continue to develop better ways of diagnosing and treating cancer, there are an increasing number of people living with and beyond cancer for many years.  There has been an increased focus on self-management, which is a concept that has been applied to many other chronic diseases in the past.  It’s basically about empowering people to manage their own health, who had some kind of illness.  There are, again, numerous ways in which this can be facilitated. There are programs run through the cancer counsel, for example, there’s one called: Living Well After Cancer, which is all about trying to help people re-establish a healthy lifestyle after having cancer.  I think that’s a big one that a lot of people focus on, is the diet and exercise type things.  It not only is improving your health and doing things like reducing your risk of recurrence, but it’s also a way of getting back some degree of control after an experience where you had very little control. There’s also just more informational booklets that do include information about self-management strategies, like the Living Well After Cancer booklet also published by Cancer Council.  Then there’s online interventions.  One that’s been developed for anybody affected by cancer by a group led by Dr.  Lisa Beady over at the Flinders Medical Centre, it’s called Finding My Way.  That’s been evaluated and shown to be effective in helping people improve their psychological wellbeing after cancer and is now publicly available.  That’s something that’s accessible to anybody who’s had cancer.  Then there are some more specific websites, a couple that I’ve been involved in developing is one called e-TC for testicular cancer survivors. Another one I’m currently working on is called: I Conquer Fear, which is specifically focused on helping people manage their concerns about their cancer coming back.  Finally, there’s one way of trying to empower people is to have them talk to other people who have been through the same thing.  Support groups are really important.  Although, not everyone likes that group dynamic, necessarily.  If you prefer one-on-one kind of support, there are programs like Cancer Connect, where you can get specific information and advice from another cancer survivor who’s had a similar experience to you. Joe:                 Yes, that’s great, Ben.  You mentioned e-TC, I love it, it’s such a great tool.  Could you talk about what it is and how did it come about? Ben:                 Sure.  ETC came about from my PhD research, which as I mentioned before, was focused on testicular cancer survivors and identifying what issues they faced and trying to find out who the men were that were struggling the most.  What we found in that was that approximately one in five testicular cancer survivors experienced levels of anxiety and depression that were clinically significant.  Having an impact on their everyday lives, making it hard for them to function and do the things they wanted to do.  That compares to about one in eight in the general population, so an increased prevalence in anxiety and depression.  Also, poorer quality of life in several areas. As I mentioned before, about two thirds of men were reporting unmet supportive care needs but were very reluctant to see a face-to-face and a professional to address those needs.  Since testicular cancer tends to affect young men, who are typically very busy with work and starting a family, or just all the things that happen in your life as a person in their 20s or 30s, we thought that reaching out to these guys online would be – given that they were already fairly highly connected in general, would be a good way of offering support.  e-TC was developed with some funding from the Cancer Council and an organisation called Sydney Catalyst, in the first instance, led by a colleague of mine, Dr.  Louise Henninger. It’s really targeted at providing men with tools of strategies to help them address some common concerns faced by testicular cancer survivors.  Which are dealing with both the physical and psychological side-effects of their illness, such as worrying about their cancer coming back, but also impact on things like their relationships.  It can have quite a big impact on sexuality and intimacy.  It’s giving them strategies to try and overcome some of those issues, such as learning how to identify and challenge unhelpful thoughts and learning some mindfulness techniques to help them deal with things that they can’t necessarily change, such as the potential risk that their cancer might come back one day.  We’ve done a little bit of evaluation of e-TC to date. We did a pilot study with 25 men who have had testicular cancer.  What we found from that study was that they thought e-TC was a really great resource, but there was somewhat limited engagement with e-TC, so men seemed to either complete the whole program or not do very much of it at all.  That may have been for practical reasons.  One man talked about losing his password and the procedure he had to go through to get it back was just too onerous, so he just didn’t bother.  Also, as I mentioned before, men are typically reluctant to engage in psychological type research, as well. There was a clear need for us to try to increase to level of engagement of the intervention by doing things like providing more videos of survivors talking about their experiences.  Also, just making it a bit easier for men to go into the intervention, get the information that they need, and then get out.  Men didn’t want to have to work through pages and pages of information and strategies and exercises that weren’t necessarily directly addressing the specific issues that they were struggling with. We subsequently refined ETC with the support of ANZUP, which is the Australian and New Zealand Urogenital and Prostate Cancer Trials Group.  We’re now testing that refined intervention in men who had testicular cancer, who were reporting higher levels of distress, so our target population I suppose.  We’re hoping that that evaluation will be completed shortly. Joe:                 That’s fantastic, Ben, because you saw a need, the need that men want to address some of those underlying psychological issues, they we may not necessarily feel comfortable about going out and seeking a face-to-face professional.  This is really something you can do from the comfort of your own home.  I think that’s fantastic.  Ben, you also touched on the fear of cancer coming back.  You’ve done some work around that.  Could you talk about why it happens, what are some of the strategies to deal with it and what is the tool that you’re working on right now? Ben:                 Fear of cancer recurrence, or people worrying about their cancer coming back is a really common concern amongst people who have had cancer.  Probably the most pressing issue for many cancer survivors.  That’s the first thing to acknowledge, that it is a completely normal reaction to have when having had cancer.  It’s a rational concern.  The reality is that anyone who has had cancer, there’s a small risk that it could either come back or they could get a new cancer.  That fact that it is a rational concern has informed how we aim to try to address it.  By we, I’ve worked with a team of people, largely from the psycho-oncology cooperative research group, which his based at Sydney Uni to try and address this problem. The approach that we’ve taken is that it’s not reasonable to expect that you could completely eliminate people’s concerns about their cancer coming back.  That it is something that is likely to happen to everybody.  What we think drives fear of cancer recurrence, which has an impact or a severe impact on people’s lives is actually their beliefs about the value of worry.  Which is called meta cognitions.  For example, if you have either positive beliefs about the value of worry, so you think it’s important that you worry so that it will help you catch any potential recurrence earlier, or if you have negative beliefs about the value of worry. For example, if you think that worrying itself might actually cause your cancer to come back.  That can create this way of thinking that is very internally focused.  Which is why we think that any aches and pains and things like that can often trigger these thoughts about cancer coming back.  It’s also very focused on threat, as well.  This causes a cycle, whereby, any trigger can set off the cancer recurrence and then people think, the thoughts about the cancer coming back, and then people say, well, it’s important that I worry or that I try to push that worry away.  That actually just increases the worry further.  The way that we’ve tried to address fear of cancer recurrence is by doing things that acknowledge that this is a normal issue, but try to change people, the way they think about worry.  They’re giving these worries less attention.  Not trying to get rid of them, just treat them as noise. One strategy that we’re using is detached mindfulness, for example.  One of the analogies that is used, for instance, is thinking about your thoughts on cancer, like trains at a busy station.  All these thoughts and concerns, these are trains that are just going past to destinations that you don’t want to go.  Of course, you’re not going to get on, you’re not going to engage with those thoughts, if that train isn’t going to where you want to go.  It’s helping people see them as more internal noise that is going to be there to some degree, but they’re turning down the volume so that they’re giving them less attention.  That’s the kind of approach we’re taking. That’s part of an intervention called Conquer Fear, which has been shown to have been very effective in reducing the levels of cancer recurrence experienced by people with cancer.  It also includes, I suppose simple strategies from that intervention that people could incorporate into everyday life.  Or also things like worry postponement, which is a strategy, whereby, you set aside a bit of time each day, for example, ideally, not too close before you go to bed, where you’re going to worry about stuff.  Whether it be your cancer coming back or whatever it is. It just means that by putting aside as specific time to do it each day, you’re less likely for that worry to be happening every hour while you’re trying to get your work done or whatever.  You know that, okay, I’ve got time to think about that late.  A lot of people find that by the time they come to that time, they’re like, actually, I don’t think I need to worry about that anymore, or that moments passed.  That can be quite an effective strategy to help people.  If you are, for anybody who is experiencing worries that are very persistent and not just transitory. A lot of people talk about their fears about their cancer coming back thing being elevated around the time of follow-up tests or appointments, but if you’re experiencing these fears all the time, and they’re having an impact on your everyday life, then I’d encourage people to go and see a psychologist. Joe:                 Wow, Ben, those are some great tools.  I love the metaphor about the trains rushing past and how you can just say, well, I don’t want to get on.  That’s great.  I think that’s really powerful.  Is that related to mindfulness?  I guess, Ben, mindfulness is one of those things that everyone talks about, but no one really knows how to do.  What’s your take on mindfulness?  Is there an approach that someone can take to think about it?  Are there any good resource that you could recommend?  What’s your take on that? Ben:                 I’m not an expert on mindfulness, generally, and the kind of brand of mindfulness that we’ve used in Conquer Fear is a little bit different than your everyday sorts of mindfulness.  The main difference is, detached mindfulness doesn’t aim to create a blank mind, if you like, which is the goal of a lot of forms of mindfulness, it’s to completely still your mind.  Whereas, detached mindfulness is, as I’ve mentioned before, about acknowledging that you might have these unwanted thoughts or feelings.  Being okay about that and just not engaging with them. Not getting on the train that’s going to the station that you don’t want to go.  As you say, mindfulness has become a bit of a buzz word recently, and I think there’s been a review done of some mindfulness approaches within the cancer context.  I can’t quite remember the results, in fact, but it was done by some colleagues of mine, so I can happily send that through, if you’d like? Joe:                 That would be great, yes. Ben:                 You can put it on your website somewhere. Joe:                 Yes, that would be perfect, Ben.  You know, when it comes to clinical trials, I guess most of us think about drugs.  Of course, online interventions also go through that process.  Can you talk about how that works? Ben:                 Yes.  The first thing I wanted to say is that it’s true that many online interventions do also go through a rigorous evaluation and testing process.  It’s certainly not true of all the websites and apps that are available out there for people affected by cancer.  There have been several reviews showing that a lot of the websites and apps available through the app store are not based on any evidence or don’t really haven’t gone through any evaluations.  That’s a concern and I think it’s probably caused by the whole regulatory system is still kind of catching up with this whole idea of delivering support online. I think it’s a really valuable way of helping people, but it’s something that, yes, we do need to be careful about, ensuring that the interventions that we’re developing are actually helping rather than harming people.  The way that we do that, for any research that’s done through universities or hospitals and public health focused institutions, to use e-TC as an example, we first developed the website with input from a variety of experts across several areas, including men who had testicular cancer, they are obviously the experts in that subject matter. Then once the intervention had been developed, we wanted to test that we had to see the ethics application, which was reviewed to ensure that the way that which we were both delivering and evaluating the intervention was ethically sound and wasn’t likely to cause harm.  Or, the benefits of that outweighed any risks of harm to participants.  What happens first, normally, is that you test the acceptability of the intervention, whether people are likely to or find it useful and it meets their needs or preferences, and it can be feasibly delivered, so people actually engaging with it. Once you’ve done that, you can then go on, generally, to do a larger study that evaluates whether it actually impacts on the outcomes that you’re hoping to change, such as psychological distress of quality of life.  These are very rigorous processes that you have to go through.  I suppose my advice to anybody who is looking for a good example of one of those tools is just to make sure you have a look at the about section of the website or app, to see who’s developed it and how it’s been done, because if it’s done by a reputable organisation, then it should be fine. Joe:                 That’s fantastic, Ben.  There’s a lot of work that goes into it.  There are many aspects to building online interventions.  You have to first understand the needs, you have to, as you said, involve the experts, come up with the solution approaches, and find the right language to present it.  I guess design the user experience and build it, as well.  How did you go about managing it all? Ben:                 I think I touched on probably the two most important things.  Firstly, to involve consumers, it’s not a term I necessarily like, but what I mean by that, the people that you’re developing this intervention for, they should be involved in the process of developing it, because they’re the ones who know what their needs are and how they’re best met.  It’s important to use theory and other research that’s gone before to try and inform that.  Ultimately, it should be driven by the need of the people that you’re aiming to help. The other thing, apart from involving consumers, I think it’s what I’m really lucky to have worked with great teams, both for e-TC and Conquer Fear, the online intervention we’re developing to help people manage their fear of cancer reoccurrence.  Then have experts that offer multiple different perspectives.  Not only the people who have had cancer, but also the experts in oncology, experts in psychology, experts in E-health or online interventions.  Also, just the experts in general research methodologies.  Yes, I think those are the two most important things involved, the end users in your development.  Try and do it iteratively, so get feedback often and make changes as you go along and work with a team that offers lots of different perspectives. Joe:                 That’s great.  It’s really reassuring to know that there’s a lot of work and a lot of structure behind it all.  I want to ask you, with cancer, which is obviously tough to deal with, and many relationships and friendships are tested.  Sometimes people don’t want to say the wrong thing or do the wrong thing.  Sometimes you don’t really know what to tell people.  It’s all very confusing, what advice do you have on that front? Ben:                 Yes, it’s interesting that you ask about this, because I actually came across what I think is a great way to actually help people who have had cancer and their friends and family connect, which you might have heard of it before, but it’s called the Can-Do app. Joe:                 No, I haven’t heard about it. Ben:                 Right, yes.  It was developed by a person who has been personally affected by cancer.  Basically, the intention of the app is to help people who have had cancer to get support from their friends and family.  The basic function that it serves is to enable people who have had cancer to develop a list of things that they’d like help or assistance with, and then they can add their friends and family as team members to this app, and those people can then either nominate themselves to help with a particular task that the person affected by cancer needs help with, or the person with cancer can actually allocated tasks to particular people.  I think, as you say, it’s sometimes really hard to know how much or how little you should be doing.  You don’t want to ignore the fact that someone has had cancer, but you don’t want to treat them like an invalid either. Joe:                 Exactly. Ben:                 It’s hard to find that balance.  I think things like this app can really help with that.  There are lots of other things, as well, if you now someone who’s had cancer, sometimes it probably depends on the person, you’d probably be the best judge of that, but a little bit of humour can sometimes help.  There are these great Emily McDowell empathy cards.  Look them up if you haven’t seen them, but there are things along the lines of, please let me be the first person to punch the next person who tells you cancer is a journey. Joe:                 I love that one. Ben:                 You know, just tackling some of those clichés that get thrown about to describe people who have had cancer.  I think that ultimately, the message is, obviously, it is hard to know what to say or do to or for someone who has had cancer.  The worst thing that you can do is to not get in touch with them at all because you’re worried about saying the wrong thing.  We’re lucky now that we’ve got text and email and messages and stuff like that, so you can really think about what you want to say before you do it, if you’re feeling like a face-to-face conversation might be a little bit awkward. I suppose if you’ve had cancer, just acknowledging that it can be hard for people to know what to say, it’s important.  Often, people, if they’re not familiar with the whole cancer process, then they might be unsure about where you’re up to and that kind of thing, so this Can-Do app enables people to give brief updates and just send them out to their support team, if you like, just to keep people in the loop.  Just doing things like catching up while doing an activity, I suppose it takes a bit of the pressure off.  If you’ve got a common interest, then doing that.  I suppose the other thing that people with cancer can do is – there’s no doubt that if you haven’t had cancer, it’s probably hard to fully comprehend the magnitude of the experience of someone who has. People with cancer often say that, so that’s where I think support groups or even online forums and things can be quite useful, because those people get what you’ve been through.  They’ve been there, so they can maybe validate your experience to some degree. Joe:                 Yes, that’s fantastic, Ben.  I really love the Can-Do app that you’ve described, because I’ve actually been thinking about the same lines, to allow people to volunteer for certain things and put up their hand and say, “Yes, I want to put up for that”, but in a way that is non-threatening on one hand but is also something that happens on your terms.  It’s not something that’s forced on you and someone does something because they think it’s right, but it’s not what you want, you know? Ben:                 Yes, that’s what great about that.  Most people want to help, but that app helps them know the best way that they can help, from the person with cancer, themselves. Joe:                 Yes, exactly.  The other thing, Ben, is caregivers, are people, maybe their partners or parents or friends of someone who’s got cancer, so it might be really stressful on them too because all the focus is on the person with cancer, they’re often the people who get left out emotionally and mentally.  What can they do to take care of themselves better, or where can they turn to for help? Ben:                 Yes, look, there’s no doubt that caregivers do it tough, there’s a lot of evidence that suggests that often they’re actually struggling even more than the people who had cancer, themselves.  Certainly, in the case of fear of cancer recurrence.  It’s often the case that the carers are more worried about the cancer coming back than the person who’s had cancer.  The additional problem for carers is they often feel like they’ve got to be strong for the person they’re caring for, therefore, they don’t express those concerns and they get really bottled up and they’ve got no one to go to and to talk to. There are support groups for carers, as well.  That’s something I think is really useful, talking to other people who are going through the same challenges and facing the same issues that you are.  I think it’s really important that, as you alluded to, carers need to sometimes take a bit of time to care for themselves.  Ultimately, if they burn out because they’re just so overwhelmed by the task of caring for someone with cancer, then it’s not going to help that person, it’s not going to help them either, if they just work themselves into the ground, basically.  There are a few useful websites I think, or resources.  Again, the Cancer Counsel is that informational support line: 13-11-20.  It’s not just setup for patients or survivors, it’s also accessible to carers. There are bits of the Cancer Council website, as well, that’s specifically for carers.  They can provide information on things like some stuff, like more practical things, like government support that they might be entitled to, for example, to offset some costs of caring.  It’s not just a time cost for the carers.  Often, caring for someone comes at a great material cost, as well.  I think getting help for that, any help that you can get is useful in that area.  There’s one website that I think there are more and more interventions being developed for carers, thankfully.  Although, I suppose the focus of research has been on the patients up until now and survivors, but helpforcancercaregivers.org is a website established by a hospital and organisation over in the States.  I think it provides some really useful strategies for the carers. Joe:                 Yes, that’s fantastic, Ben.  Thank you so much for sharing some really fantastic advice.  I’m going to definitely follow-up and put all of the links to the resources that you’ve mentioned just now.  Thanks very much.  It’s been a great help. Ben:                 Yes, thanks, Joe.  It’s been really great talking to you.  

Today, I’m talking to Christoffer, he’s an expert in psychosocial cancer research and we take a plunge into the deep and murky waters of the psychology of cancer, the psychological repercussions of cancer on you and those you love. Here is what we cover: How diagnosis can change the way you see yourself Evidence that psychological stress does not cause cancer The impact of mindset on survivorship Social factors that play a huge role in our approach to treatment Dealing with 3 major late effects that come with cancer The need to treat cancer as a collective disease and much, much more! Links Christoffer Johansen’s Research Profile Episode 007: How To Use Your Inner Resources To Better Deal With Cancer Episode 016: Your Survivorship Blueprint Full Transcript Joe:                 Hey, this is Joe Bakhmoutski, and welcome to Simplify Cancer Podcast. Joe:                 Christoffer, you know cancer changes the way other people see you.  That can have a huge negative impact on how you see yourself.  What’s your perspective on that? Christoffer:       I think that most of the reasons why other people are changing their point of view on a person who has been diagnosed and treated for cancer, is that it raises fears about dying and you are suddenly close to a person who you know is undergoing a really severe treatment, which is life threatening, and you are mirroring yourself in this person.  Therefore, you are actually getting afraid, not that you are going around with an epidemic, speaking on an infectious disease that you in some ways feel the vulnerability of this person.  It’s in a way transferred to yourself.  Therefore, you think that is the reason why, or that is some of the reason why there is a change in the interaction between the people that are dying from cancer and their close relatives and friends and colleagues and so on. Joe:                 You think it’s they are afraid of dying themselves? Christoffer:       In a way, their fear of dying, which is a constant issue that we’re talking with is becoming more realistic, so to speak, in a cancer patient, but it is also mirroring out or spreading out in the closes surroundings as a phenomenon.  One of many phenomena that is close to cancer disease. Joe:                 Yes, absolutely, Christoffer.  What about the self-image?  What about how the people see themselves?  Do you notice that people who are cancer patients and cancer survivors, do they start to see themselves in a different way and perceive themselves to be different and behave in a different way, the way they are out in the world? Christoffer:       We know from some of the scientific studies, that there is some degree of self-stigmatization that’s coming along with a cancer diagnosis.  First of all, you can imagine that those patients having a cancer, which we know is closely related to lifestyle, for example.  Let’s say, lung cancer is associated with smoking, we may feel guilt, ascribe the guilt to their own behaviour.  Therefore, feel that they are the reason why they have cancer. I know that there are several places where people who have lifestyle associated cancers are asking for treatment time slots, which is in the early morning or late afternoon, not to meet other patients and to tell them which diagnosis they have and what they are treated for, because they are afraid and do not feel that they can stand up for the diagnosis that they have, because it’s clearly mostly associated with lifestyle.  For that reason, that is an example of change. There are also these diseases where you hardly lose control with some of the vital functions.  Let’s say you get a colostomy or you get a prostate cancer, so you don’t control your urination as well as you did beforehand.  Then these diseases, you also see a kind of a social self-isolation because it’s difficult to do down to the supermarket or be in company with other friends or conduct activities that you could do beforehand.  In many ways, there are some candidacies, where you see these changes in behaviour caused by the cancer or the treatment.  Of course, it’s also a change to yourself because you have another perspective of life when you are having a diagnosis of cancer. Joe:                 That makes so much sense, Christoffer.  I know that you did a study that has categorically proven that stress, your personality traits, and depression do not cause cancer.  I believe that’s incredibly important, Christoffer, because it means that you can’t blame yourself for cancer, as some people do.  What’s your view on that? Christoffer:       Well, we set out on this investigation because it was a quite prevalent point of view in the late 60s and 70s, and in the last century, that stress is a major risk factor for severe disease.  If you ask people today, I think you would get the response that stress can cause many of the severe chronic diseases.  Don’t forget that people believe when you’ve got ventricular ulcers from stress, they also thought that tuberculosis was caused by stress, asthma, this disease and so on, was in the beginning diseases where you thought that this was caused by exposures in your surroundings that alerted you. We have a large population base, using nationwide data and access to almost complete follow-up information.  Not been able to confirm this hypothesis enough, it’s close to now 20 large-scale studies.  That is, of course, a very interesting thing because it’s a fortification of the idea that the factors you mentioned before, personality traits, depression and stress can cause cancer.  I think it’s very important to inform people that you cannot blame yourself, with regards to these factors. Of course, you can blame, to some extent, yourself for other factors, but all the biologists that I worked together with here, they always say it’s a lottery.  It’s by random that you achieve cancer, you cannot very often ascribe the entire disease to yourself, because, as you know there are many people who can tolerate smoking.  Many people can drink enormously amounts of alcohol and never get any disease.  We don’t really know who the ones at risk are. Joe:                 Yes, that’s certainly great news, Christoffer, because like I said, we don’t really have to feel guilty anymore.  On the flipside of that, some people believe that having a positive attitude, a positive psychological approach can help deal with cancer in a better way.  Is there any evidence, do you think, to say that it’s true? Christoffer:       I don’t think there’s sufficient evidence that if you behave in certain ways, or you are very positive, have a positive-mindset, that you have a better survival chance.  What changes if you have this attitude is, of course, that you will probably change your behaviour.  Therefore, you could say that behavioural changes may play a major role.  In some ways, what I’m saying is not the mind factor in itself probably cannot change the prognosis of the cancer disease, but what is coming in the aftermath of that, can of course have some impact. The starting point of this, what is done is from a UK-based group, Steven Greer’s group, who in in the late 80s published a paper that showed that fighting spirit in cancer patients was superior compared to helplessness or hopelessness in surviving cancer.  This was a way of putting words on the entire concept of coping with a cancer disease.  The same group, ten years after published a follow-up study, in which they now had information about dramatic factors related to the disease and couldn’t confirm their prior results. Which, of course, was a relief, because what about all those cancer patients who hadn’t been positive all the way through, with negative days or bad days, should they then blame themselves that they were not coping with life entirely positively.  Therefore, in a way, also could blame themselves that they didn’t survive the cancer disease. I think my take on all of this is that, of course, you can say that mindset plays a role because it influences the risk factors we know.  Today, we are saying that cancer patients should have a lifestyle which is the same as people keep to or stick to, if they want to avoid cancer.  The impact of a psychological intervention is that you probably will have a better life, in terms of a quality of life, a better understanding of your situation.  The secondary effect could be that it influences your prognosis.  That’s not because you have a better mindset, but because it can potentially have a better opportunity to change your behaviour. What we also see is, of course, that those that can afford to go to a psychologist will be more affluent, have a lot more education and be living in marital relationships.  At this point, the fact that social inequality probably is of much more importance when we talk about survival.  Even in the Scandinavian countries, where you have a public health system, which means that you have free access to all kinds of medical services, from the GP to the highly specialised oncology ward.  In each country, we have up to 20 percent difference in survival when you look at any social marker and for any cancer disease.  This is across all cancer diseases. Joe:                 Wow.  What role does it paly?  How does it work? Christoffer:       It works, I think, in the way that people with short education, living alone, having competency of data and information of their cancer will potentially have more capability when they’re diagnosed.  They will be diagnosed at a later stage.  Probably their compliance to the treatment will be lower.  Also, the resources they have at hand when they leave the treatment situation are fewer.  Therefore, they are not in the same situation, so to speak, to start off the life as a cancer survival. Joe:                 Well, Christoffer, that’s certainly an eye-opening finding.  I never would have thought of that.  What do you think can be done about it, for us as a society, what can we do to change that? Christoffer:       Well, most of our modern industrial societies, of course, there are variations, but that’s builds on a contract where you expect that if you pay tax, you will have a uniform homogeneous return from government in the form of public pensions, free schools, the highway should be nice, we will have green parks and clean beaches.  We expect that our children could go to a school that would give them a basic education.  All of that said, which I think is a meaningful qualitive idea, and it’s very well-developed, as you know in the Scandinavian countries.  Still producing equality. That calls, in my mind, for inequal treatment.  What happens today is that we give all cancer patients, in principle, the same treatment, the same package.  Now, if we really were taking the evidence seriously, we would understand that we would make inequal treatment to achieve the equality.  It would be achieving homogeneity in survival, we cannot do that by having heterogeneity in the way we treat patients.  That means that the well-educated, affluent citizen diagnosed with prostate cancer, will not have the same follow-up, the same support from nurses, the same intervention, the same surveillance as the cancer patient with prostate cancer coming from a poorer condition.  That’s very much against the whole system because we do not expect that people would be willing to pay tax and support the society, if they wouldn’t get some kind of return on their investment, so to speak.  How would me make a policy where we then have citizens that accept to pay more than they gain? This is all the case now because most of them that are paying to the public system, they have, in parallel, private pensions, or private health insurances.  They have all kinds of private or union-based or pension situation-based things that are running.  This means that it’s also a societal discussion because you could carry on this thinking in relation to: Should I then have the pension from the government? Well, maybe not?  Should we have free kindergarten?  Well, I should not have that.  Maybe I should pay some more for it, or should I pay a little bit for the university because I can afford it?  This is a big thing, so to speak, to talk about. Joe:                 Absolutely.  Christoffer, sleep problems are common during and after treatment, what do you recommend some of the ways to deal with that? Christoffer:       Well, there are now just coming out of another Danish group, a very interested web-based Stem program that I did see, coming out in the journal of the national cancer institute, which was a study where they showed a web-based application actually significantly helped patients with sleep disturbances.  There are also many discussions ongoing about the combination of cognitive models, cognitive approaches and physical training.  You combine various interventions in order to achieve some kind of an effect with regard to sleep. What we don’t know so much about is, of course, how much is caused by the cancer disease?  How much is caused by the fear of having the cancer, the fear of recurrence?  How much is caused by the treatment?  Or, how much is simply at play because you are now not 18 years old and can sleep forever?  You are 65 or 70 and you are an old person, an elderly citizen, who is expected to have some kind of sleep problem, so to speak.  Which means shorter sleep periods, irregular sleep, you wake up maybe one or two times at night and then you start sleeping again. Whereas, if you are below the age of 20, you can sleep continuously for many hours.  Then that’s not the case for citizens that old, therefore, we are in a way also a little bit stepping around and not really knowing, not the severity, but the true incidents of this phenomenon.  Although, today, we would say that that is one of the big three late effects across all cancer diseases: Fatigue, depression, and consistent pain problem.  They’re probably the big three. Joe:                 Just to go back to that, so the big three problems around cancer are…? Christoffer:       Depression. Joe:                 Depression. Christoffer:       Pain. Joe:                 Pain. Christoffer:       Fatigue. Joe:                 Fatigue.  Okay.  Is the depression that we’re talking about, is this different, this is clinical depression?  Is it? Christoffer:       Right, yes. Joe:                 Yes, wow. Christoffer:       Yes, this is not different from the so-called ordinary, if you can talk about that, depression.  This is a regular depression that fulfils criteria for depression in accordance with transformation system of diseases. Joe:                 Yes, wow. Christoffer:       We say that 20 percent of cancer cases will experience a clinical depressive episode during the first five years after diagnosis. Joe:                 Wow, those are staggering statistics.  One in five cancer survivors will get depression? Christoffer:       Within the first five years after they were diagnosed. Joe:                 Within the first five years? Christoffer:       Yes. Joe:                 Wow.  What are the factors that you believe are responsible for that?  If we think about cancer survivors, I guess cancer is gone, you’re trying to live a normal life.  Obviously, some you might have something inside the facts, you might have the fear of the cancer coming back.  What are the biggest factors behind this depression? Christoffer:       Of course, it plays a role.  Social factors and age probably plays an age.  It’s difficult to say because we do not have large-scale studies in which we have investigated across different cancer diseases.  There are, of course, you could say that there are vulnerable patients, and these are mostly outliers, meaning that if you are having difficulties in your economic condition or your resources.  If you have had a complicated disease situation during your treatment, or if your tumour is difficult to find.  For example, systemic therapy that responds to it, that is playing a role in the cancer treatment you can provide to this patient.  All of these factors that I mentioned here are factors that play a role.  Most importantly, it is that we do not have, in any country, a systematic screening for depression. We don’t know how we should do it, when, and how often?  That needs to be much more clarified because we have shown in a couple of large studies, that if you have depression, you actually die earlier.  Mostly because you are not following the protocol of treatment that you should.  Either because you are, when you’re depressed, not able to do it, or it’s difficult for you, or because you’re not provided this treatment because you, as a depressed patient, behave differently in the out-patient clinic, or you don’t comply with the issue that’s there, with the conversation or the diagnosed workout and so on. There are many reasons.  What I’m trying to show you is this complicated puzzle of reasons and risk-factors for that system.  I want to point at it because it is, in my mind, overseen and overlooked, an overlooked issue. Joe:                 Absolutely.  Christoffer, mindfulness has gained a lot of attention lately, as a tool that can help to deal with anxiety and depression.  How does that translate into dealing with cancer? Christoffer:       Well, first of all, don’t forget that mindfulness is a Tipton practice.  One of my colleagues, who is a professor in psychology at the university of Copenhagen, went out to Tippet and showed them the questionnaire we are using in the western world to find out if people are mindful.  Then he translate it back, this question, to Tipton, he has then made a short documentary in which these monks are laughing for half an hour because the questions we put to say if you’re mindful is so stupid and doesn’t have anything to do with being mindful. What we’ve done is, we’ve taken a technique, we love the Asian mysterious sitting in the Chorister somewhere, deep into the Tipton Mountains living on Yak milk and eating dried meat and different mushrooms of mindset qualities, and all that mysterious way of living we love to transform into the western world.  Going back to the late 60s, where all this idea about meditation, yoga, Buddhism, all these eastern philosophies are a big thing in our mindset because we think that is more original than our own way of living.  That’s also kind of a huge, collective placebo in the entire aspect of mindfulness.  On the other hand, I think it’s remarkable that many studies have shown actually an effect in the psychological function of people that went through this course.  We tried it out also ourselves in a randomized trial.  We found significantly an effect on depression and anxiety. I believe that there is an effect.  I’m not sure whether it’s the mindfulness in itself, so to say, but it is something within that package, which I think is linked to these exercises which are truly connected to being present in the moment and being aware of what’s going on and being, as a citizen, living in a world full of distracting mobile phones and media things going on, on different platforms.  Of course, we are in a way in desperate need for originality, which is being who we are, and that need is extremely challenged when you are diagnosed with cancer. Therefore, it has really a message and appeal to cancer patients.  I think you could say that it does play a role but also, I love to remind you that there’s also a collective placebo function going on, because we have enormous adoption going on around all of this eastern world life philosophy, because we have this imagination that they are thinking more original and clever than we are.  I’m not quite sure this is the case. Joe:                 That’s good to know, Christoffer.  We know our way around it, as well.  Christoffer, if mindfulness can help, what do you think is a good resource for someone who wanted, if someone had cancer, and wanted to help them deal with the whole mental side of it and they wanted to explore mindfulness, what would be a good recourse?  Is there a book or an online intervention that you can recommend? Christoffer:       I cannot go straight into recommendations because I simply don’t know the market good enough, but I could say that I’m always very keen to advise you in these matters that you have to go to professionals.  That means that, in my mind, that one of the things that is a little bit challenging in the world of cancer is, of course, that there are so many people who see the business opportunity in patients, because they are so vulnerable and open-minded because they’re in desperate need of taking action themselves, to become editor in their own life, because having a cancer is the ultimate loss of control. Therefore, you feel that you are – yes, you want to gain that control again and hear such techniques as mindfulness, which is one way.  There are various techniques which are offered, and people are willing to pay whatever it costs to gain that control again, if they could gain some kind of control.  I cannot, Joe, come up with a specific choice I would do.  What I would definitely go for the most professional, that people that are attracted to the university environment, or connected with hospitals, or the medical profession is, in my mind, some kind of a quality signature that you need in these cases. Not in this situation, where you are looking for help, for example, mindfulness, diet, physical exercise, how do I reduce my alcohol consumption?  What about stopping my smoking?  Can I change my work life?  All of these things that you feel are calling for your attention when you’re a cancer survivor, the more professional support you get, the more hopefully evidence-based it will be. Joe:                 That’s great advice, Christoffer.  Another thing I wanted to ask you is, I know that you looked at using book clubs to support mental health and cancer survivors.  I find that idea fascinating.  What did you find out? Christoffer:       We didn’t find out that much.  First of all, the whole book-reading come from this new phenomenon in many parts of the world, where people are reading in small groups and discuss a novel or some poems or poetry.  Then have a social gathering and that’s one way of sticking together when you’re no longer belonging to a family, you’re not belonging to these stable environmental conditions that we are beforehand were a part of.  In this study, we just try to find out if it could work, could it not work? Of course, it can work if you are a book-reader, you love to look.  You have a big heart for that.  We’re now also working with the idea of having cooking classes for wives who are married to prostate cancer patients, to relieve the stress of being married to a prostate cancer patient.  That’s another idea in this area.  All in total, you can say that going back to my previous comments, that these ideas are all, like mindfulness, are all coming out of a middle-class culture, where we believe we have middle-class ideas about what the good life is.  It’s a very female universe, it’s a universe based on the idea of talking about your problems, about expressing your emotions. It’s about dealing your inner thoughts with other people.  All that is maybe not always the same ideas when you live in different conditions.  There are huge studies, ongoing, showing that the psychology, or the psychological capital, we would call it social capital with which you enter the cancer world is completely different from our different backgrounds.  These initiatives, which I’m also part of myself, have severe limitations because they don’t reach out to patients that is maybe in most need of it. To those who are actually our friends, so to speak, because they’re coming from the same social background as we are, and therefore they have a high compliance with our ideas about the good life.  Today, the largest challenge comes from the patients that are underserved, these are the difficult patients.  They don’t show up when they have an appointment, they are smelling of tobacco when they enter the out-patient clinic.  They are talking loud in the waiting room.  They are courting with their co-patients.  They don’t read the magazines that we put out to silence people in the waiting room.  They ask for the remote control, so they can look at formula one race at the television when they’re in the waiting room. They don’t want to see a romance comedy.  They are arguing with the nurse when they go out, that the doctor was an asshole because he didn’t do this and that, and so no and so forth.  My government just released a strategy for digital health technology for all in five years in Denmark.  Every picture in that digital technology strategy is completely clean.  It’s nice people in suits, it’s people with a clean shirt.  It’s people who have smiling kids, but that’s not the reality. Therefore, we’re constantly seducing ourselves to forget where the real challenge is.  Going back to your question about reading a novel, well, for some people, this is of course a wonderful thing to do.  It could be a way of coping with your cancer disease, but we are not addressing the real problems. Joe:                 In terms of self-help, in terms of things that you can do yourself in order to try and make it better for you, what would you say are the top three things that would help someone to deal with cancer, mentally, emotionally, socially? Christoffer:       I don’t know.  I could point to something, but I’m not sure that I’m pointing to the right three.  I think it’s such an individual question.  I think it’s quite overlooked how much your daily lifestyle influences your life with the cancer disease.  It is extremely under investigated area.  I would point to that as one area.  That is much more important that we think because there are so many side-effects in terms of psychological and social wellbeing that we have overlooked and have not imported into the clinic, to the extension that we could do it today. That would be one area.  I would also point to the area that you are not having your cancer disease alone.  You are always having relatives, a wife or a husband, children, colleagues, whatever, that are influenced by the disease.  Today, we understand and treat disease as a disease belonging to the individual.  In a way, you could say that the disease is belonging to social construction.  This social construction being you, the patient, but also people around you.  Having said that, I would then say that this area, the relationship, it’s extremely important to nourish and secure. Both seen from the point of the relative and from the point of the patient.  My third advice would be that you should take every chance in life to become the editor in your own life.  The more you can edit, the better. Joe:                 Well, that’s very profound, Christoffer.  As you said, most people do not experience cancer alone.  They have partners or significant others who are particularly vulnerable, emotionally.  Often, they need as much support as the person who has cancer or who has cancer.  What can be done to make it better for them?  What can be done to support the partners or the close family of those people who have cancer?  For them, from personal experience, I can say it’s almost harder because not only do they have to support the person who has cancer, but they also have to try to maintain some sort of resemblance of normal life. Christoffer:       I think that today we have this medical marvel in which we treat cancer as an individual disease, that the tumour belongs to the person.  That’s okay.  Seen from a logical point of view, but it doesn’t make sense when we go into every other aspect of life.  This also goes for diabetes and cardiovascular disease, for obesity, for arthritis issues, for thyroid.  Every chronic disease has a partner, so to speak.  Every citizen with a chronic disease has a person or a partner.  Partner not being a spouse, but one person you partner up with, you team up with. In my mind, we have to rethink the medical model and first of all, we have to give birth to a model in which we use the patient and the closet relative as major resources in our treatment.  Second to that, we have to rethink the model, which is now sequential.  It means that we are doing one thing at a time, whereas we are facing the diagnostic phase.  Then we are planning and outlining a treatment phase.  Then we have a clean-up phase called rehabilitation. Then we have a very late clean up phase called, living with late effects.  What I don’t understand why this is the case, well I do understand that’s the whole way in which the medical profession has organised treatment and specialisation, which is very high in our modern societies.  In terms of the model, you need to rethink that model and make it much more integrated so you, from the beginning, try to pre-habilitate the patient. There are patients who are obese, have a weight problem, they are smoking, they have alcohol problems, they have dietary problems, work problems, whatever, at the date of diagnosis.  We know we have a window of, say, four to six weeks because the first time, we always talk about knife-time, meaning, when are we putting the knife on the skin?  When are we starting?  Knife-time means that when knife-time starts, it’s a metaphor for: Now we start the treatment. In that time window, between diagnosis and treatment, today, we say to the patient, “Go home, drink some red wine, wait for me.  I’ll send you a letter and then we call you in and then we start off the treatment.” Instead of having a very active time period, where we could engage the patient and the partner in changes that would make the patient much more in a situation where he/she could tolerate the nightmare of treatment that we are starting off, at the date of knife-time.  Therefore, I think the entire model now is in a sequential outline, is a catastrophe because in modern society, we are not having – when my granddaddy had Parkinson’s, he was having this as his only disease.  When my mother died, she had three diseases.  When I die, I will probably have six.  You will have eight.  My kids will have ten. That means that having a disease being chronic, chronicity, so to speak, is calling from another paradigm in the way we’re treating these diseases.  Which, by the way, all are treated independent of each other.  Which is stupid.  The multi-diseased patient calls for another model than what we did in the old times, when we only had one disease at a time, because we died from that disease.  When you got a mild infection, you died.  It was very easy.  When you had your cancer, well, we could do something, but then you die.  Now, we survive from all of these diseases. This means that when you come to the hospital with one disease, in this case cancer, you have other diseases already in place and you are treated for them.  We expect you to survive 40/50 years with this disease.  Therefore, this question you’re putting me is both going for a different paradigm in who is diseased, the epidemic, the social epidemic quality of cancer, and how do we treat cancer patients, not as an isolated entity in the world, but as a disease among several diseases.  The new treatments we’re giving these cancer patients will give them other chronic diseases. Now, we label them late-effects, but what it is, in fact, is cardiovascular disease, it’s diabetes.  It’s changed in the new function, it’s changed in the neuroethical system.  You cannot do this and that, you have physical disabilities.  All that is diseases.  It’s not something which is specific for cancer.  Well, it is because it’s specific that we are seeing it in cancer patients, but the diseases would be treated symptomatic, as if they had raised before we had our cancer.  These two aspects cause for differences in the marvel that we treat cancer. Joe:                 Yes, fantastic, Christoffer.  One thing you touched on before was, you said that there are many factors that are not really investigated or given enough attention in terms of daily life and daily practice when it comes to cancer and to deal with cancer mentally.  What are those things and what can we do about it? Christoffer:       Well, I’m not a psychologist, don’t forget that.  I’m not the real expert in some aspects of things I would know about.  What I think that the entire area of psychological or psychiatric aspects of cancer has been overlooked.  Mostly because we don’t know really how to deal with it, or should we in the oncology clinic deal with it, or is this an area for the GP, or who’s responsibility is it?  Why aren’t you just happy that you survived?  It’s difficult for me, Joe, to come up and say this is how you do.  I think I don’t have any first aid book that I can tell you, but I can tell you that you have to take it seriously, you have to take it seriously both for the patient and for the closest relatives. That the cancer disease is actually calling for more mental interventions than you believe, so to speak.  This is also the case for diabetes.  This is also the case for cardiovascular disease.  It’s not different from all of the other chronic disease.  We’re not used to seriously setting up a model where psychology and social factors plays the same role as the somatic interventions.  Most of the reason why we are so thin in this area, so to speak, is that in my mind, psychology and social workers haven’t been good in documenting the effect of their interventions. Where medicine has this century-long tradition of documenting, describing the effect of the interventions they practice, this is not the case for psychology and social studies.  Therefore, they have been easy targets for reduction in staff when hospitals are cutting down in the public sector.  What you see is that in the private hospital sector, for example, in the U.S., the access to these resources are enormous, because you can pay for it through your insurance.  Insurance-paid hospitals have a completely different setup, a completely different orchestra of things you can offer the patients. When we talk about public systems, as we know in Australia and we know here in Scandinavia, UK, Holland, Germany, and so on, Canada, it’s typically systems that have been threatened by cut-down, cut-back, because governments feel they have to show that the public sector is effective compared to the private sector, in order to secure the survival of the public sector. Joe:                 Yes, that’s fantastic, Christoffer.  There’s lots of think about. Christoffer:       Yes. Joe:                 Thank you so much. Christoffer:       Okay.  It was a pleasure, Joe.  Take care down there, right? Joe:                 Yes, absolutely.  You too.  

One of the main challenges that you’re confronted with when you get cancer is that you are completely unprepared.  You’re thrust into this alternate universe, where you’re confronted with new rules, and new terminology and new specialists, new perspectives and all of a sudden, you have to make decisions and you have to talk to new people and you really don’t understand their world and where they’re coming from. Today, you’re going to hear from Joseph, a top urologist who works with cancer and Joseph is involved in an incredible amount of work, from seeing patients and performing procedures, to doing research and training the next generation of experts. Today, he’s going to give you an insider’s view into the world of urology: Breaking the news on cancer 2 key reasons to get a second opinion Unique make-up of urology Understanding your own information needs How to approach appointments and follow up Why you are in safe hands with a urologist How to get a second opinion and much, much more! Links Dr Joseph Ischia Doctor Profile Talking Urology Episode 009: Why The Oncologist Is Your Guide Through Cancer Full Transcript Joe:                  Joseph, tell me what is it like being a urologist and what does your typical day look like? Joseph:            Being a urologist is a lot of fun.  There are a lot of different specialities and we get to choose our specialty along our training, but being a urologist is fantastic because we deal with great patients and I think very interesting conditions that urologist patients have.  My average day would look like usually getting up quite early, often well need to see patients that we’ve got sitting around in various hospitals, if we’ve operated in different hospitals, then we’ve got to get to wherever we’ve got to be to at eight or eight-thirty AM, which will be an operating list or seeing a list of seeing patients. Those are the two main things that we do, is review patients, to chat about what their management will be or their next treatment or try to sort out their problems, then we’ll have operating lists and they will go for half-days.  We tend to have half-day operating, half-day consulting, we call it.  You can do that in either public or private hospitals.  Most urologists and certainly most specialists tend to have a mix of both public and private. Joe:                 Tell me, Joseph, why did you become a urologist and has that perspective changed over the years? Joseph:            I don’t think anybody grows up wanting to be a urologist.  It’s a bit of an unusual speciality to choose, thinking of checking men’s prostates and looking inside bladders, it doesn’t strike you as something that a teenage boy aspires to be.  I think this is a really important point about medical specialists.  I think there are doctors that choose their specialty, but I think far more often the specialty chooses the doctor.  Different specialties have different personality types.  I always want to be an orthopaedic surgeon, so I thought this is what I’ll do, I have a sporting background, replacing knees and hips and it will all be a lot of fun.  Then I realised, I didn’t really love orthopaedics, I didn’t love looking at bone fractures and deciding if people needed hip replacements. One of my rotations when I was a junior doctor was to do urology and I was really stuck with it.  I thought, this is a shame.  I did it and I absolutely loved it.  There were two reasons for it.  One is that I really get on well with urologists.  The people that were my bosses at the time, I clicked with their personalities and I think some specialities are very high-strung, other specialties are very laid back.  Urology is quite good, it’s sort of in the middle.  The urologist I worked with, they had a lot of outside interest, it wasn’t just about always having to look after people or thinking about that 100 percent.  If you’ve got that great perspective, you can then bring that into your patients. When you see them, you can be more relaxed, and I like to think that we’re relatively friendly when we chat to patients most of the time.  The second issue, so, one, I liked the specialty and I liked the doctors, but the second thing is, you find that you have a knack for something.  I had a real knack for urology.  When I was an intern, my very first year, once I had finished medical school, one of the things interns have to do is put catheters in patients.  Some people can just not put a catheter in a patient to save themselves.  I had developed this reputation of being very lucky, and I still think it was luck.  I could put catheters in patients, and there is a bit of skill to it. There are just things that you pick up really easily or there are things that you don’t.  I always picked it up.  I had a knack for it.  I liked the doctors, but another important thing is, I liked the patients.  I really liked treating men with prostate cancer.  That was what really brought me in.  We had this prostate cancer clinic in the hospital that I worked at, and these are guys, the patients this is, that are in their 60s or 70s, they’ve had good lives, they’ve got a cancer that’s not usually rapidly progressing, and they live with it a long time and they’ve very philosophical about it. You can imagine, that’s very different to other specialties.  Say, if you’re a breast cancer surgeon, you’re dealing with usually women, quite often in their 40s, with young families.  It’s incredibly stressful.  As a patient and as a doctor.  Looking after these people, you take that stuff home.  Having men that come in and they sort of know each other in the clinic and they’re all relatively happy, that’s different.  The worst thing that I ever would do would be paediatrics.  The thought of kids being unwell just didn’t appeal to me at all.  My speciality chose me in the end. Joe:                 Wow.  That’s fantastic insight, Joseph.  You would have definitely hated me as a patient.  I just felt like there was a lot happening with cancer, right? Joseph:            It’s madness and that’s how it can feel.  I’d like to say that it’s very controlled behind the scenes.  For your perspective, you as a patient, you’re given a lot of information very quickly because a lot of the time with these cancers, decisions need to be made relatively quickly.  We can’t spend three months backwards and forwards until you know every little bit about, for example, let’s choose a cancer such as testicular cancer or bladder cancer, we know from the literature that’s out there, that if you wait more than three months from when you are first diagnosed with bladder cancer to having your ultimate treatment, which may be septectomy or radiation treatment or just having that tumour removed, if you wait more than three months, we know that you don’t do as well as people who get treated in less than three months.  We are racing against the clock. Now, we’re not proud of the fact that you would walk away not understanding what we’ve been talking about.  That’s absolutely never what we’re trying to achieve.  We are trying to get you to know as much as possible.  We understand, and it’s been shown that as soon as you sit down with someone, urology has lots of areas around it, but we’re talking cancer today, if you say, “You’ve got cancer of the bladder, this is what we’re going to do.” Studies have been done on the psychology that people do not remember the first thing or the next thing you say after they’ve had cancer.  You can have a one-hour conversation with them, where you have this wonderful to and fro and they will walk out.  They’ve done studies where, right, what did you talk about today?  The patient will go, “I’ve got cancer.” “Did he mention the treatment options?” “He did, but I can’t remember them.” Urology has a very good female representation.  We need to give you information that you can digest, and we need to do it in a relatively quick time. Which is why these support groups being very important.  We’re a big fan of them.  I think it’s very hard for a testicular cancer, because it’s a relatively rare cancer, but for prostate cancer, for example, there are lots of prostate cancer support groups around now, they’re fantastic because people can spend a lot of time talking about it with other people who are about to go through, have gone through, exactly the same thing.  That’s very useful because that reinforces to them what the doctors said, “I remember my doctor mentioned that, is that what he was talking about?” We get a lot of that from the prostate cancer support group.  I think we don’t intend to confuse you, we do try to give you all the information. There’s a lot of written material around that we will give you, but a lot of that can be very difficult to understand.  Even now, we know that understanding – when you do medicine, just going a bit on the side, the average person uses about 5,000 words in their general spoken language every day.  That’s just the common 5,000 words.  When you learn them, you can learn nearly any language.  By the time you’ve finished medical school, you’ve learned another 5,000 very basic words.  Essentially, we’ve doubled our vocabulary that we use when talking to each other. That can be very hard for us to pull back when we’re trying to get across to patients, who are clearly not medically trained, you’re not supposed to be, you have your own specialities and interests, that the things that we need to say, because, in fact, this treatment will help you.  We don’t always do a good job of that. Joe:                 You make such a great point, Joe, because I remember that I was in such a complete fog during this initial diagnosis and things happened so quickly.  Within a week, I had my left testicle taken out.  You make a fantastic point about leverage and the knowledge of the people who have gone down that road before, as well as talking to specialists such as yourself.  How do you break the news about cancer, having said all of that? Joseph:            It’s an art, not a science.  Some doctors are better at it than others.  My personal approach is to be honest and empathic.  That’s really tough to do because there are some patients who want to be eased into it, they want to be taken out to dinner, metaphorically speaking, before you hit them with the diagnosis.  Others say, why did you spend the first five minutes wasting my time if you’re now going to tell me I’ve got cancer.  They don’t say that out loud but different people have different personalities.  It’s very hard for us, as doctors, to read what sort of personality type is the patient.  I find I have the least trouble by being absolutely honest and then getting their feedback on how they feel about it. You’ll have, for example, say we’re talking about testicular cancer, that’s a good one because that’s where you’ve come from.  You would have noticed a lump, most likely, you would have had an ultrasound and your GP would have said, “That looks like cancer, you’ve got to go see a specialist.” That’s what it would have been.  We can see you, we’re not going to sit there, it may or may not be cancer.  99 percent of the time, a lump in the testicle is going to be cancer.  We will say, and I would start with: Right, as you’ve talked with your GP, you’re well aware that you most certainly have testicular cancer.  Then you’ve got to very quickly move onto what we’re going to do next.  This is cancer that affects the testicles, it can spread outside the testicle but the vast majority of the time, it doesn’t. We’ve got plenty of great treatment options for you.  We’re going to start by… this is how I do it… we’re going to start by removing the testicle.  Then we’re going to check to see if it’s spread.  That’s when we do the CT scan that you would have had.  You’re always saying, and this is a great cancer for treatment, you try to give them the positives, and the vast majority of people will be cured with testicular cancer.  It’s a relatively easy conversation to have.  You’ve got other cancers such as bladder cancer, where you say, “I looked inside, you’re having bleeding, and I’ve looked inside your bladder” when they wake up, you’ve got to tell them. I did, I noticed some cancer inside your bladder.  Now, what we need to do next is work out what sort of cancer it is and how far it’s eaten its way into the wall of the bladder.  You’ve got to give people hope, that’s what I like to do.  At the end of the day, there’s no point not telling people what’s going on.  I think it’s very important.  In fact, a lot of patients that we hear about, “My doctor didn’t tell me anything.” I think that’s extraordinarily rarely the case.  I genuinely don’t think – there are no doctors to ever hold anything back from their patients.  There’s certainly a lot that’s changed in the last 50 years with regards to medicine.  We’ve gone from patriarchal medicine, where people turned up, patients turned up and the doctors said, “You will have this done.  Don’t ask any questions.  This is what we’re going to do.” That’s not the case anymore.  It really is a journey together. We will say to patients, “Alright, this is the problem, this is what we’re going to do together.  I’m going to operate and then you’re going to do this, and we’ll do that.” I think it’s very much a joint decision-making process, where the patients are involved in every step of the way. Joe:                 Yes, that’s fantastic, Joseph, because I think that honesty and directness really builds trust between you and your patient. Joseph:            It can do.  You say that, but some people find it very confronting and they’ll say, “That doctor has no bed-side manner.” There are some doctors that do it well, there are some doctors that do it poorly, but even the doctors that do it well are going to have patients that will be upset, because maybe there are different personality types.  You’re not always going to get on with your patients.  That’s very true.  That raises a whole issue of, if you don’t get on well with your doctor, find another doctor.  That goes for whether it’s your GP, whether it’s your specialist or whoever you’ll see, because sometimes you’re just not going to get on well with people.  That’s just a fact of life.  It does not mean they’re not doing a good job from a medical perspective for you, but you’re just not clicking.  I think that can happen. Joe:                 Yes.  When that happens, let’s say you’re a patient and something is not working, either emotionally, or you’re not happy with the level of information that you’ve provided, how do you look for someone else?  How do you start that conversation?  Where do you go?  What do you do? Joseph:            It’s a good point.  There are two reasons you should go see another doctor.  One, if you’re really not getting on well with your doctor, and that’s usually personality.  The doctors, I feel like I’m closing ranks, we are very well-trained, and we need to continue to maintain standards that are at least acceptable to our peers.  It’s a lot like airline pilots.  Some airline pilots are good, some are bad, but the planes hardly ever crash, right?  Even the bad ones are still doing a really good job.  That’s like your doctor, there’s a 50 percent chance that your doctor is below average.  That’s just statistics, right?  Even if he is or she is, they’re still doing a really good job.  If you don’t get one with a doctor, go find another one.  The best place to start is your GP.  The GP is the most important person is any part of your medical treatments or medical pathways and management that you’re currently going.  Go back to your GP and you just say, be honest, “I didn’t get on well with him, is there anyone else who you would recommend?” That’s one reason. The second reason you should go see another doctor is for a second opinion.  You can get one incredibly well with your first doctor, but we’d always recommend that you consider getting a second opinion for something that is going to be a major decision, such as a major surgery, major treatment plan.  It’s always good to hear someone else’s take on it.  Doctors don’t always agree, and you want to know that you’re making the best decision for you at that time.  Once again, your initial doctor probably will be a little bit offended but shouldn’t be, because that’s medicine, I know, I’ve certainly had patients that have gone for other second opinions and you think, “Didn’t I do a good enough job?” In fact, if I were a patient, I would go get a second opinion. That’s exactly what I would do because you want to make sure you’ve got the most and the best information.  After a second opinion, it’s probably a law of diminishing returns, then you would see other people who have gone to see five or six specialists.  In the end, they just end up being more confused.  You GP is the right person to do that again, or you can even ask the specialists you’re seeing.  You could say something like, “This is fantastic, I understand that getting a second opinion can be a really important part of my treatment, do you mind if I do that?” Any doctor worth their salt should say, “No problems.” “Is there anybody you would recommend?” You could get a GP recommendation, or a recommendation from your specialist. Joe:                 You make a fantastic point, Joseph.  It’s such a stressful time, half the time, you don’t know what you’re really doing, what is the procedure going to be like, what are the side-effects from chemo or radiation or another treatment.  Do you think it’s a good idea to bring someone to the appointment with you, maybe a partner or a friend? Joseph:            Absolutely, if you can.  Yes, would strongly recommend partners come along.  If you don’t have a partner, you can get a family member or a friend to come and join you, because of the problem that we had initially.  Which is after you say, “Sorry, Joe, you’ve got cancer.” The next 20 minutes is lost on you, really.  Whereas, the friend or the partner is very good at remembering that stuff because it’s not as personal to them.  Admittedly, if it was your spouse, they might freak out as well, but they’re usually a lot better at remembering stuff because the person that it’s affecting primarily, they really do shut down after that diagnosis.  We find the spouses are very good for that reason.  Absolutely.  You’ve got to remember, it’s up to the patient. As a doctor, my only responsibility is to the patient.  Now, if the patient says, “I don’t want my family here.” That’s fine.  If the patient says, “I would like to bring in half the football team.” I can say, “That’s going to be pretty inconvenient.” I’m happy to give it a go.  The patient shouldn’t feel, “I’m being pressured by my family to bring them along.” My only responsibility is to the patient.  That’s very important.  The importance of the patient-doctor relationship is the only thing that really matters in this whole thing.  Quite often, that will involve the patient saying, “I want you to keep my family involved.  Then that’s what we’ll do, because it’s their request. Joe:                 Yes, that is a great point, Joseph.  If someone has questions in between their appointments or after a procedure, is it okay to ask for a way to contact you, maybe an email address? Joseph:            Yes, email address is probably the best because as specialists, we are usually very busy.  In fact, we are usually seeing people, to answer a phone call, we’re usually having to stop what we’re doing for one patient to answer a phone call.  If that’s an emergency, that’s fine, but we don’t tend to answer our phones while we’re chatting, we’ll catch up in between patients or when we’ve got a break.  An email is the best way because we can get back in touch with that at a time that suits us and get the information to you.  The problem with the email is that you don’t want to get caught up in a long to and fro, because emails are very tough to get across information. They’re very impersonal and they can be misinterpreted.  It’s usually better.  If it’s just a, “Did you say I should start this antibiotic this afternoon?” Yes, that’s a good answer.   If it’s, “What were the side-effects of that treatment again?” That’s not a good email because that’s something you should have face-to-face, because I can say, “One side-effect is that you might become incontinent with this treatment.” You can’t just leave that hanging there.  That’s a big thing to have there.  This gives you a risk of getting cancer.  Well, how big is that risk?  If you’re doing it face-to-face, “That risk is very small.  In fact, the study that showed that risk is probably an artefact, not real.” You’ve got to be able to put things into context, you can’t do that, or you’d be writing ten-page emails every time to make sure you’ve got every nuance across.  Simple questions, yes, difficult ones, I’d make another appointment to come back and see them. Joe:                 That’s a great point.  I think the knowledge that you can actually make another appointment to follow-up and clear up any questions that you might have, I think that’s really important. Joseph:            Absolutely.  We strongly encourage that.  For example, we very rarely give you all the information in one sitting and then expect you to go off and have a big operation.  Mostly, we’d say, right, for example, let’s just go to prostate cancer.  Okay, you’ve got prostate cancer, it’s the sort of cancer that probably needs treatment because not every cancer needs treatment, but yours does.  Your treatment options are surgery or radiation.  Here is an information booklet.  I’ll tell you about surgery, about radiation, here’s an information booklet, I want you to come back in two weeks and see me. Now, if you’re interested in radiation, I would recommend you go and see a radiation doctor.  If you have decided that you think surgery is the right thing for you, then we can do that, but you don’t say to them, “You’ve got prostate cancer, I’m going to book you in for next week.” You’ve got to give people time to take in all of that information and make a decision that’s right for them.  You’ve got to remember, the decision, there are competition reasons, or there are competing facts or motives when people come and see you.  For me, my reason might be, I want you to have this treatment because it has been proven to extend your life as long as possible. Whereas, the patient will say, “That’s fine, but I don’t want to lose my sex life which might be part of that treatment that you’ve recommended.” You can actually sometimes have a bit of a disconnect because as a doctor, we do sometimes get caught up in survival and we can forget quality of life, which can be very important to patients.  That’s very important.  That’s why there’s not always a right answer.  Living is not all about just living as long as possible. Joe:                 You make a great point there, Joseph.  You mentioned other specialists.  When you refer someone, a patient to another specialist, maybe it’s an oncologist, how do you choose that person?  Is it a part of building up your network over the years, how does it work? Joseph:            It is.  I think that’s one of the advantages of working at a public hospital, it’s that you really have a very good network straight off the bat.  There are two advantages of that.  One is you get to know what they’re like.  You get to know, and you have people that you get on well with.  You know that they do a good job and look after patients well, you’ll refer them to that person.  The second issue is, you’ve got to find someone that’s convenient for the patient.  If the patient had driven 45 minutes to see you because of whatever reason, they got referred to me as a urologist, but they need some chemotherapy for example.  In fact, it would be far more convenient for them to have that closer to home. What we’ll often get is, say, patients that come from outside Melbourne or for whatever reason they think that coming to the city is the right thing to do.  There are incredibly good urologists in the country, there’s usually no reason to do that, but somethings you need to come in for.  For this stage of your treatment, you’re probably better served closer to home.  We will then get in contact or from our network, we’ll know, “That guy out in the country, he’s a great medical oncologist.  He can give you the chemotherapy.” There are two factors.  People that you know are good at what they do, and they need to be local to the patient. Joe:                 Yes, that’s a fantastic point.  What about the general practitioners, what is your relationship like?  Do you meet them?  Do you talk to them?  How would they, for example, recommend you? Joseph:            It’s one of the great questions, but I can’t fully answer it.  GPs have specialists that they refer to and you would like to, as a urologist, I’d love to become the specialist that certain GPs would recommend.  I do have GPs that refer to me and it’s because I’ve got the dad or one of my school friends is a GP that refers, another one, a couple who were residents when I was a resident, they know you.  They all refer to.  Then you start getting some that you don’t know how they heard about you, but often a patient will say, “I saw this guy, he was really good.” Then the GP will say, “I’ll put him on my roster and next time I might just send him something.” That’s how you build up is how GPs refer to. It’s a little bit of a black box, but I don’t think any specialist really knows how.  We go out and do sort of GP presentations, so they at least get to know you and go, “This guy is not an idiot” that’s what you want GPs to think of you, really.  As far as the role of the GP, there’s absolutely no doubt that, and this is for any person, that the GP is the most important person in their life regarding the medical treatments.  The GP is the quarterback, they coordinate everything that’s going on.  The patient that has a heart disease, prostate cancer, and needs a hip replacement, the GP says, “Right, I’m going to get you to see this orthopaedic surgeon, I’m going to get you to see this cardiologist, and this other surgeon.” They coordinate all of that for the patient.  If the GP is not on their game and good GPs are worth their weight in gold, then they will take very good care of their patients.  I’d always vote, if you don’t get on well, if you haven’t got a GP that you click well with, then you need to find another GP.  They are the most important person in the whole medical system, really. Joe:                 That’s a fantastic point you’re making.  What about, we touched on second opinions before, do folks come to you for second opinions, if so, how do you deal with that? Joseph:            Well, we strongly encourage second opinions, there are different specialists who have different attitudes to second opinions.  Some of them see it as this patient has come to see me, great, I’m going to take over their care.  That’s not unreasonable.  That’s how they want to run it.  I personally don’t do that.  I’m very much a, right, you’re treating specialist has said, “This is how I would treat it.” I write a letter including the first specialists and I say, often you’ll get to the end, “Yes, that’s what my first guy said.” I’ll say, great, go back and see them.  If you’ve got any more questions, I’m happy to see you again.  I don’t try to take over people’s care. As urologists, we’re all very reasonable and I don’t have any misconceptions that I’m any better than any of the other guys that are out there and they all do a very good job.  I’m very happy.  We have areas of specialty.  There are certain things that I can do that other guys don’t specialise in.  I did my fellowship in advanced prostate and bladder cancers.  I can do certain bladder cancer operations where it’s called neo-bladder, that other people don’t necessarily do.  Apart from that, we’re all very well-skilled, usually.  There are different types of urologists, as well. There’s oncology urologists, there are functionals, people that have trouble with their bladders.  There’s reconstructive urologists.  They do people who need repair of their urethras or spinal chord patients, these sorts of things.  They can look after that as well.  Then there’s fertility urologists.  We fall into broad groups that we have our areas of interest, as well.  To get back to your question, the second opinion, very happy to do them, but I’m not looking to take over anybody’s care.  If they get to you and they go, “I want to continue seeing you.” That’s fine.  That’s certainly not my intention. Joe:                 Cool.  There are obviously a lot of things changing in urology or any sub-field of urology, so how do you keep up with the latest research and how do you actually incorporate it into your daily practice? Joseph:            There are a few ways we keep up to date.  One, we are expected to keep reading the literature.  We will read the latest journal articles.  I’ve got things that I’ve flagged, that if an article comes out in a particular topic, say prostate cancer or testicular cancer, I’ll get an email list once a week saying: These are the latest articles in your area of interest.  I’ll usually click on those.  Then that’s a great advantage of wanting to be a part of a public urology unit, is that they’ll be a group of urologists and you’ll bring your interesting cases to the meeting and say, “Has anybody got any advice?” Someone will say, “I did that, and I had one of these a couple of years ago.  I found this useful, or look up this paper, that will help you.” “Okay, great.” Then the third way is we go to conferences.  We have to, well, you don’t have to go to conferences, but it’s certainly part of our continuing medical education.  We’ve got national conferences.  I go to at least one of those, usually two a year.  I’ll go to one or two international conferences a year.  It’s all with the purpose of, as any doctor now needs to, we’ve got what’s called: CME.  Which is our continuing medical education, where we have to do a certain number of things to get enough points to make sure that we’re staying up to date.  The college of surgeons, for me, I’m a urologist, are very particular on what I can and can’t claim. They’re very strict on making sure that I keep my education up to date.  I think it’s good.  It’s great for the community that you can rest assured that the college of surgeons is bastion of old men that are trying to keep it at closed shop.  I don’t think so at all.  I think the age of what people see and everything that’s happened over the last ten years, saying, in fact, you are a monopoly and you’ve got to work extraordinarily hard to maintain that.  Surgeons do an enormous amount of work to make sure that it’s not a monopoly, but that all the doctors, you can be sure that they’re held to a high standard. Joe:                 Yes, that’s fantastic, Joseph.  That’s obviously a part of learning.  Do you teach at the moment, as well? Joseph:            I do.  I’m a researcher as well.  I look at ischemia reinfusion injury, which is what happens with transplant.  If you, say, take out a kidney, it sits with no blood going through it for a while, then we plug it into someone else.  That’s the ischemia, that means no blood supply.  Then the reinfusion is when that blood comes back into that organ.  It actually causes some damage.  We’re looking at ways of preventing that using zinc, so I’m fascinated by that myself.  I do research and I do teach.  We have medical students that are attached with our unit.  They will take them through cases in out-patients, when we’re seeing patients.  We’ll ask them, “Are you happy a medical student sits in?” Everybody says, yes, that’s fine, and we’ll discuss different cases with them then.  We do teaching to mostly medical students.  We also have, the other teaching we do, is we have other doctors that are in the urology training program, training to be urologists, and will be in three/four years.  Some of them are almost fully through.  We are teaching them the operations.  It’s very much an apprenticeship surgery.  You have to teach the next generation how to do what you’ve done.  That’s how we’ve got to where we are over the last few hundred years of the guys older than you teaching the younger generation. Joe:                 Would you say that this field is almost – I guess I’ve been in IT for my whole life and I’ve seen this evolution of technology changing so rapidly, do you see this evolution happening around urology, around oncology, these sort of areas? Joseph:            Absolutely.  It’s almost unfathomable where medicine will be in ten years.  If you look back ten years ago and said, “You’ll be carrying around a little phone in your pocket that’s got the computing power to be able to surf the net and answer any medical problem you’ve got and probably make diagnosis very well.” You would have thought it was crazy.  That’s where we’ve come in ten years.  Can you imagine in ten years’ time what we’ll know about genetics of the disease will come on a lot?  The way of managing the disease.  I think these automated diagnosis, programs, are useful but not the be all and end all because this was one of the bit points, everyone thinks, “I can just plug my symptoms into Google and I’ll get an answer.” You’ve got to know what to type in.  That’s what medicine will be about.  I think medicine will be about guiding people through.  Look, I’ve got a cough, I think I’m dying of lung cancer.  No, you’ve actually got this, and I think this makes more sense.  You can get lost if you don’t understand the basics of what you’re trying to get into.  That’s where your GP and your specialists are really there to help.  I think we’re a long way off automating – good for me at least – I think we’re a long way off automating surgeries.  With automation coming, there will be parts of things in medicine that will be automated that are currently done by doctors. The classic examples would be stuff like radiology, like reading an x-ray.  Computers can do that very well now.  When the miss it, they really miss it big.  That’s why you still need urologists.  It’s a lot like planes could probably take off and land themselves, but if they don’t, you want a pilot. Joe:                 That’s a great point.  Thank you so much, Joseph.  I really appreciate your time. Joseph:            No trouble at all, Joe.  It was lovely to meet you and good luck with your podcast.

Right now we have a really special guest. His name is Michael Jefford, and Michael is not only an expert in oncology, but he’s also a passionate advocate for cancer survivors! In this episode, Michael shares some truly inspirational words of wisdom on how you can take control of your life during treatment, and what to do with this whole uncertainty and stress around cancer really gets to you.  Michael also has some tremendous insights on how you can deal with the challenges that come with rebuilding your life after cancer:  On dealing with fear of cancer coming back Understanding your preferences about decision making Trusting your specialist How hope sends people on the search for alternatives Building a better life after cancer Tougher journeys for different groups through cancer Powerful tools to help during a consultation with your specialist Understanding palliative care The importance of general practitioner during cancer and much, much more! Links Coping with the fear of cancer coming  back (fear of cancer recurrence) Questions you may wish to ask about the time after treatment How your general practice can support you to live well Healthy Living After Cancer Information for same-sex partners Gay and bisexual men diagnosed with prostate cancer Support in your own language (Cancer Council Victoria) SECOND Ears smartphone app Episode 009: Why The Oncologist Is Your Guide Through Cancer Full Transcript Joe:                 Michael, I know from experience that this fear of cancer coming back is very real, like it gets hold of you and much more after recurrence, if you get that.  What can be done with it to deal with it in a better way, both in a healthcare perspective, as well as from a perspective from a person who needs to deal with it right now? Michael:          Yes.  We know that the worry about cancer coming back or cancer growing or spreading is very common.  We know from a lot of work that’s been done in Australia and internationally, that Australia is really leading in this area, that the worry about cancer coming back is very common and it can last a long time.  People talk about learning strategies to deal with this.  There can be a number of different things.  For some people, it’s about acknowledging anxiety or distress and being able to recognise that and to have strategies to deal with it.  For some people, it’s useful to understand what their risk of recurrence might be and to put that into some perspective. For some people, the risk of recurrence might be quite low and that can be comforting.  We know, too, that for some people, being able to do all that they can to manage the risk of recurrence is useful.  Strategies like being as well as you can be, maintaining, exercising, healthy diet, participating in regular surveillance, where it’s recommend and evidence-based.  Also, I think talking to people about how you feel and recognising the stress that comes with having had cancer and follow-up and the like.  Sometimes that’s useful to talk to other people who have been in a similar experience. Perhaps for some people being connected to a support group or something like cancer connect, that the cancer counsel runs.  For some people, it’s useful to have the opportunity to talk to a professional.  That might be a counselor or psychologist or somebody else like that. Joe:                 Yes, that’s so true, Michael, because sometimes you really need someone with an outside perspective, someone who isn’t involved with you to listen to you and to perhaps give you advice, right? Michael:          Yes, I agree.  I think a lot of people, friends and family could be well-meaning, but potentially might not recognise the concerns that people have.  To have an attitude of: It’s being you, you’ll be fine, may not actually help people who are really worried about the possibility of cancer coming back.  Having the opportunity to talk to other people who either might have been in a similar experience, so a peer or a professional can be useful.  We know that there are a number of interventions that have been studied in very rigorous scientific research that have been shown to be effective in helping people to minimize or reduce that concern about cancer coming back. Joe:                 Yes, that is so true.  I know you touched on having some information around the facts.  I know that one of the things that really helped me was immersing myself in cancer, like becoming an expert in my own illness, so to speak.  It gave me a confidence in the treatment and the side-effects and understanding the chances of it coming back.  It also made me ask informed questions, as well.  Is this a good approach?  Is this something you would recommend to others? Michael:          Yes, I think that everybody’s different.  Certainly, in my own experience, you come across people who have very different styles and needs for information.  There are people who say, “Look, I want all of the information” and they come along, and they’ve researched their illness and treatments and know as much as the healthcare team.  There are other people who say, “Look, I trust you, I want you to give me the best advice.” Everyone’s a bit different.  I think that there are people who, I might provide written information and some people will say, “That’s great, I really want that.” Other people will say, “I don’t want to read it.” It’s handy to have at home in case they want some good evidence-based information. I don’t’ force a particular my own preference or my own belief on anybody, but I guess recognise that everybody has different information needs and different styles.  One of the things that I often talk about is that, for example, I go to see my accountant and I probably shouldn’t confess this, but I don’t know a lot about accountancy and tax, but I put my faith and trust in my accountant with the belief that he’s going to do the right thing by me.  I think that everyone is going to be different and we need to be able to fit in with people’s information and information preferences and their own preferences about decision-making. Joe:                 I know you just mentioned how people have different preferences, with respect to information.  Did you notice any patterns with regards to, for example, men and women having different preferences or maybe people of different ages?  What’s your take on that? Michael:          I think it’s pretty hard to generalise, so there’s probably a trend that younger people probably want to be more involved and often want to have more information.  I guess that we’ve come from a situation of let’s say 50 years ago, where it was more of a: Doctor knows best kind of a belief.  There’s less of that now.  At the same time, there are many people who almost feel burdened if you say, “Do you want chemotherapy A or chemotherapy B?” Some people will say, “I don’t know, you tell me.” Almost feel that it’s burdensome to be asked to make that decision.  I guess that we have to recognise that everyone’s different and we can’t assume that just because someone’s older or younger, that they’re going to have a particular preference for information or preference for decision-making.  I think the easiest thing is just to ask. Joe:                 Yes, absolutely.  I know when, for example, I was deciding between my treatments, I could go either the radiation or chemotherapy.  In the end, what really decided for me was the person on the other end, because I spoke to a radiation oncologist and a medical oncologist and really, without even talking about side-effects, different side-effects and treatment, my medical oncologist gave me all this confidence that things will be taken care of.  If any problems should arise, we can work around it.  It was ultimately having the person on the other end that you put your trust into. Michael:          Yes, look, I think that being in a situation where you trust the person that you’re working with is really important.  I think that’s true when I go to see my accountant.  I trust the accountant.  I think that’s really important in having a relationship with any professional, indeed with anyone, but you really want to find somebody that you can work with, who you trust and you’re going to be able to have that sustained relationship with. Joe:                 Absolutely.  Michael, I know that there are many alternative treatments that really have no evidence for treating cancer that can give false hope and take people off-track.  Can you talk about what some of these supposed treatments are? Michael:          Yes.  I think that you’re right.  I think that there are plenty of treatments that are recommended or that are promoted that may not be evidence-based.  There may actually be no information to support their use.  Some of these treatments that have been suggested as cancer treatments have been studied and have either been shown to have been not effective or toxic or both.  Many of them just simply haven’t been studied.  I guess we don’t know for many of the treatments. I guess that what we’d recommend is that people need to get information, try to find out whether there is data that supports this, and talk to people, talk to their family, talk to their GP, talk to their oncologists.  If there’s something that’s being suggested, then talk with people about that and try to get the information and be confident that they’re going down the right path. Joe:                 Absolutely.  Where do you think that stuff comes from?  Is it from conspiracy theories or is it some hopeful and magic cure?  What is it? Michael:          I think that a lot of circumstances we don’t have treatments that are good enough.  Many illnesses, particularly if cancer spread to somewhere else, in many circumstances the standard treatments that we have are unlikely to lead to cure.  For many people, that’s devastating, they want to find something that’s going to give them a better chance.  I think that most people are looking for other options with the hope of a better outcome.  That better outcome might be a better chance of cure or longer survival, fewer side-effects, those kinds of things.  I think that people have very legitimate reasons for looking for other options.  Unfortunately, sometimes I think people are misled and I think that there are people out there who are making money because people are desperate and they’re looking for something more than what can be offered by standard medicine. Joe:                 Yes, absolutely.  How do you know if this supposed treatment if it’s a myth or if it’s reality? Michael:          I think that, again, it’s probably trying to get information yourself, but also talking to people and looking for other sources of evidence.  The Cancer Council has an information service, so 131120, and people can call that service and speak to a cancer nurse and talk to them about treatment options.  They might say, “Look, I’ve been given some information about this type of chemotherapy or this putting a magnet on your head or something.” The nurses on the cancer helpline will be able to look up that information and they’ll be able to talk to somebody about the source of treatments that are being suggested. I have patients who will bring in information and sometimes I’ll be able to talk about that straight away.  Sometimes I’ll say, “I haven’t heard about that, can you let me look that up and then next time we catch up, we can talk some more about it.” I think it’s really important that people talk to their health practitioners but get information and feel confident that the treatment that they’re going to embark on is evidence-based. Joe:                 Yes, I think you brought up a fantastic point, that nurses are so underrated when we talk about cancer treatment.  I’ve heard so much fantastic advice from nurses, from oncology nurses over the phone, in-hospital, that I can’t say enough good things about thing. Michael:          I agree.  The nurses often sometimes have more time and can often help people with understanding the information they’ve been given, help people make a decision that sits with them, help people with a broad range of issues that might be health-related, it might be emotional, it might be social, it might be practical.  Those nurses might be in the hospital or the clinic, but they might also be in the community.  I guess that’s having a good team around you, which are your specialists, people in the hospital or the clinic, but also a GP, potentially a practice nurse, and then it’s about having other supports, as well, which might be through the cancer counsel, through a support group, friends, family, all of that.  A network of people around you. Joe:                 Yes, you’re exactly right.  It’s so important to have your supporters around you.  Your family, like you mentioned, your friends, and specialists.  If you flip out conversation to talk about complementary therapies.  What are some of the approaches that can help someone deal with cancer or having a better life after cancer? Michael:          As we were just discussing, making sure that you have support is an important component of getting through cancer treatment and life after treatment.  I think that supports are really important.  That could be through family and friends, but it could also be through support services.  There might be a support group, it might be an online forum, it might be a telephone-based support.  That’s important.  In terms of what else you can do to be well and get through treatment, it’s probably not a surprise, but exercise is really important.  There’s growing evidence that exercise helps people get through treatment, and probably reduces the chance of cancer coming back, but has broad benefits.  It helps people with mood, with sleep, with coping with treatment. Exercise is important.  It’s not always easy to incorporate exercise but we know that some is better than none and more is better than less.  Also, on that, a lot of hospitals don’t have a lot of exercise programs, but GPs can link you in with exercise programs through referral to an exercise physiologist or through a physiotherapist that’s Medicare reimbursed.  Then there are also exercise programs that are run by the, for example, Cancer Council.  They have a program called: Healthy Living After Cancer that you can, again, call: 131120.  I don’t work for the cancer counsel, but I do recommend them.  That’s a program that people can access at no charge.  Also, thinking about diet and alcohol, that will help people get through treatment. Minimizing alcohol, we know that alcohol can actually increase the risk of cancer coming back for some types of cancer types, including breast cancer.  It’s important to be aware of alcohol consumption.  Then there are other strategies that some people would call complementary, so Tai-chi and Chi-gong, we know can actually help with wellbeing and relaxation.  They are also strategies that we would consider to be very complementary that side aside standard therapies. Joe:                 Yes, that’s fantastic, Michael.  I should look into that.  Michael, if you’re gay or lesbian or transgender, you might really have special needs.  You might even have to deal with some prejudice when it comes to dealing with cancer.  What would you say to someone who’s having to deal with it right now?  What should you expect and where should you turn to if things aren’t going to plan? Michael:          Yes, I think you’re right.  I think there are a number of groups that probably feel that it’s a more difficult journey for one reason or another, it might be LGBT communities, it might be migrants, it might be aboriginal people.  A number of different groups that probably have a tougher journey.  I think that can be a part of a problem with having health professionals who don’t necessarily sit comfortably with different groups.  We know that there’s probably, to an extent, people perceive that there’s either more of a hetero-centric attitude or even homophobic attitude sometimes in health. Sometimes it’s hard for people know are gay or lesbian, transgendered people in the healthcare setting.  It might be important to therefore go and look for additional support services.  Of which there are services.  I know that BCNA, the Breast Cancer Network of Australia and PCFA, the Prostate Cancer Foundation of Australia, both have good links to information and support services.  Now, that’s not just for people who have breast cancer or prostate cancer.  If you had listeners who are gay or lesbian or who have partners or friends who needed extra information, then I’d suggest going to those websites, because they do list services that are not specific to particular cancer types. Again, the cancer counsel has resources, too, so sometimes it’s tough but to have that additional information and support and link to people who have been through similar circumstance could be useful. Joe:                 You make a great point, Michael, because there are a lot of things that those support services focused around breast cancer and prostate cancer, because they’re more prevalent, but a lot of those needs, like you mentioned, around it is universal.  If people can cancer, they should go into and look up some of these services. Michael:          Absolutely.  Breast cancer and prostate cancer aren’t the only cancers that people have.  They’re certainly not the only cancers that gay and lesbian people have.  If you have bowel cancer or if you have any other cancer type, it’s still worth contacting those sorts of resources, because most of these support groups aren’t cancer specific and many of the issues, if you’re a gay man or a lesbian woman, many of the issues that you might experience would be shared regardless of whether the type of cancer that you might have.  I think that support would still be useful regardless of the cancer type. Joe:                 Yes, exactly.  You touched on other underprivileged groups, like, for example, migrants who might not be heard because they might not have the language skills or maybe the cultural integration to speak up.  Folks like that can really fall through the cracks when it comes to healthcare.  That may make them feel misunderstood.  What can we do to make that better? Michael:          There’s the Australian research that shows that migrants to Australia that do have cancer do have worse outcomes.  They often report poorer quality of life and more anxiety, depression, etc.  Some of the recommendations from that work were that many people feel more comfortable with practitioners that speak their own language.  I think it’s useful to seek out people who speak their own language and understand their own culture, that might be useful.  There’s always the opportunity to use an interpreter, and I think that that’s important.  It’s better that we don’t have family members who have to act as interpreters.  Sometimes family members who might be well-meaning, might withhold some information from people, which isn’t always ideal. I think using an interpreter is a good strategy.  The cancer counsel does have a growing amount of information that’s available in other languages.  At the Survivorship Centre here at Peter Mac, we’ve developed information for people who have completed initial treatment for cancer in many different languages, which is being promoted through the cancer counsel nationwide.  I think that there are some strategies, we talked earlier about a telephone information service that’s run by Cancer Council at: 131120, but you can access that with an interpreter. That’s another avenue, as well.  At Peter Mac, we’re doing some work on audio recording consultations.  That can be useful, too, for people to have that consultation audio recorded with an interpreter.  Then it can be useful to go back and listen to that.  I guess we do need to think about what additional strategies we can do, so that people don’t fall through the gaps, like you said. Joe:                 Yes, exactly.  I think that recording the conversation would actually be fantastic, even from the perspective who don’t have a language barrier.  I know from personal experience and some research that I’ve read about, as well, that when people go through a cancer diagnosis, their first meeting, you’re just in a fog.  You walk out of the first appointment with an oncologist or a urologist and you remember nothing about what happened.  It would be really good to refer back to something that you can listen to and go, “Yes, so that’s what we were talking about.” Michael:          Yes.  There is actually good evidence that using audio recordings and also question prompt lists can help people to – question prompt lists are really just a list of questions that you might like to ask.  We’ve developed some questions prompt lists here, including for cancer survivors, so a list of questions that you might like to ask your health professional.  That can help be a note and be an aid when you go to a consultation, to go: Yes, I actually do want to ask these questions here.  That can help with questions asking and that you can ask the questions that might be difficult to raise.  That it might be about: I want to talk about the cost of treatment, or I want to talk about the impact on relationships or sexuality.  Some things that aren’t always asked in a consultation. That can be a useful way of helping people when they’re going to a consultation.  There’s also good evidence that recording a consultation helps people, too.  It’s an aid.  It means that they get a lot more out of the consultation.  Like you said, you go to a consultation and you’re stunned by bad news and then you just don’t hear anything more.  That’s why taking notes, having a friend there, having an audio recording can help.  We’ve known for a while that these sorts of things help, it’s about trying to make sure that they get implemented.  Colleagues at Peter Mac have an app that’s called: Second Ears.  Which will allow people to record the consultation on their phone, but also so that we get a copy that we can keep in the record, as well. Joe:                 I love it.  It wasn’t around for me.  Michael, that’s fantastic.  When it comes to, you mentioned, having those pre-prepared questions, I think that sounds like a fantastic resource.  Where would you go to get those questions?  Also, who would you take those questions to?  Is it a medical specialist?  Is it a general practitioner?  What are some of the questions that are you should ask? Michael:          That’s a big question.  It depends on that person’s individual circumstance.  If you’re newly diagnosed versus you’re finishing treatment, versus another setting, then you might have a different set of questions. Joe:                 Let’s say you’ve finished treatment, you had an all-clear, and you’re just going to deal with check-ups and you want to improve your life going forward? Michael:          Yes, so this question prompt list, we have a question prompt list on the Australian Cancer Survivorship website: www.petermac.org/cancersurvivorship.  There are a list of questions there.  Some of those question might be about, tell me about what kind of follow-up I might expect, or tell me what’s the purpose of the follow-up?  It might be a question you might want to ask about what sort of signs and symptoms should I look out for?  It might be about, well, what are the sorts of things that I can do to be as well as I can be, or to minimize the chance of the cancer coming back?  Some people might like to ask about: Are there effects that might happen to me down the track? We talk about late and long-term effects.  People might be curious about that, but they might also want to know: Are my family members at risk of cancer, or it might be about how do I get support, or can you recommend websites?  Everybody’s going to have a different set of questions.  Some people might feel more comfortable asking their cancer nurse some of the questions or their GP or their specialist.  I always say, if you’ve got questions, ask everybody until you get the answer.  The GP might say, “I don’t know what your risk of long-term effects are.  Chat to your oncologist.” You oncologist, you might say, well, put me in touch with a psychologist in my local area, they mightn’t know, but the GP might.  I think it’s important to have the questions and then see who you think might be the right person to ask them. If you’ve had a good relationship with the cancer nurse and the cancer nurse is great at putting you in touch with support services, you might say, “Well, I’m going to go and ask my cancer nurse about additional support now, because they might know.” I think it’s important to have those questions, write them down because it’s always difficult when you go to the consultation, you’re going, “I know I had a question and I can’t remember what it is.” Write it down.  The other thing is, if you’ve got questions, the cancer helpline can be useful, but other websites.  If you don’t feel like you’re getting the answers, then take it to your healthcare team. Joe:                 That makes so much sense, Michael.  I think that using every available tool at your disposal works.  Right? Michael:          Absolutely.  Sometimes it can be overwhelming.  I think that being able to go to someone who you trust and say, “I’m a bit overwhelmed, I keep reading all of this information, just give me the facts.  Where is something that I can look at that is going to be short and concise and evidence-based.” There’s so much stuff out there, you don’t want to be overwhelmed. Joe:                 Absolutely.  Michael, there was a time when I was in hospital and I was getting chemo, next to me, there was this man and I heard the doctor talk to him about palliative care.  The man was just freaking out, he was saying, no, I don’t want to go, they’re sending me to die.  I kept hearing about it for hours.  Is that a general perception of palliative care, do you think? Michael:          I think it’s a common perception.  I think that many people associate palliative care with end of life.  I guess that we think that palliative care is much more than that.  Palliative care is more about making people as well as they can be for as long as possible and looking after physical symptoms but emotional, psychological, spiritual health, but also seeing that person in the context of a family, or an extended group.  Often, palliative care is about trying to help everybody and to try and keep people as well and healthy for as long as possible.  We think that palliative care sits alongside active treatment, and often it’s good to engage palliative care at an early state when they can help with the whole person and the whole family issues and family needs. Although, palliative care might have particular assistance for people towards the end of life, palliative care, the whole team, that’s doctors, nurses, allied health etc, can be valuable for a much longer period of time.  Palliative care might come in, so we might have somebody with difficult symptom issues, and we might ask palliative care to be involved.  Then they might be involved for a period of time and then not be involved.  They might be involved a year or two later.  Palliative care can come in and out. Joe:                 You touched on spirituality and when it comes to, for example, cancer survivors, people who have beaten cancer and quite often have a complete shift in priorities and the way they look at life, what do you think is the role of spirituality and other psychological approaches to looking to the future and have a better perspective? Michael:          Yes, that’s a big question.  I think that what you’re touching on partly is that cancer is a life changing experience.  It’s not all over when it’s over and many people see life differently.  Often, people think about meaning and purpose and what’s going to be important for them for the rest of their life.  They also find meaning and connection in different ways.  I think that for a lot of people it is a time to reflect and also to see what gives them meaning and purpose and value.  For some people, religion or faith is important and strengthens them and allows them to be strong and get through life. That’s not for everybody.  Other people, it’s just resetting life and going, “These are the sorts of things that are important, these are the sorts of people who are important, these are the sorts of activities that are important to me.  This is who I want to live my life.” That’s, at the same time, survivors talk about an obligation to have an epiphany and an obligation to feel like, “Wow, my life has changed fundamentally.” For some people it is and for other people it’s just like, “Well, I’ll just get back onto life and it’s pretty similar to how it was before.” Life hasn’t changed fundamentally.  For some people, it is a shift.  I think for most people, there’s a degree of seeing life a little bit differently. Joe:                 In terms of cancer survivors, how does the doctor, the general practitioner, how do they stay in the loop with the cancer survivors?  I have a great relationship with my GP, but it doesn’t feel like there is a holistic integrated approach out there. Michael:          I think that we probably all recognise we could do a better job of providing a more integrated coordinated healthcare model.  We know that for many people, they have a very fragmentated healthcare system.  They might be seeing, even when we just think about cancer, they might be seeing a surgeon, they might be seeing a medical oncologist, a radiation oncologist.  They might perhaps also be seeing nursing allied health.  That’s just their cancer part of their health.  If people have other health conditions like diabetes or heart disease or lung disease, then they could be seeing other practitioners. Then the GP is supposed to bring it all together and see the whole person and coordinate all of this.  That’s pretty challenging and I don’t think we necessarily do a good job of that.  In the cancer world, people often talk about, and GPs talk about, the GP might make a diagnosis and then they go and see a specialist, they get stuck in the cancer world, and then at some stage, they pop out again and the GP often goes, “I don’t know what happened to you.” I haven’t had good information that can be a problem because often patients and survivors go, “I don’t know if I should be seeing my GP because they don’t seem to know what’s going on.”  That’s not the fault of the GP, it’s the fault of the system, and often cancer care, that we don’t do a good job of integrating the GP with the whole person care. We think that it’s important, though, because often people have other illnesses, often the GPs have had a long-standing relationship with that person.  They might have known them for decades.  They understand the whole person.  It’s really important that we don’t neglect the GP.  Now, the tricky thing is, obviously if you’re coming into hospital on a regular basis, it’s extra visits to say, “Well, you should be seeing your GP, as well.” Understandably, many patients would say, “But I’m seeing you.  I don’t want to have to see yet more appointments.” It’s challenging.  I think we need to be doing a better job of communication from the point of cancer diagnosis, through the cancer treatment, and beyond.  The GP has a really important role in managing other illnesses, in health promotion, in wellness, in trying to help people quit smoking, exercise, eating well, managing the whole person.  There’s a way to go in that.  I think we’re making progress but there’s still a way to go. Joe:                 Fantastic.  Thank you so much for sharing your perspective, Michael. Michael:          It’s a pleasure.  

I’m really excited today because I get to talk to my new friend, Frances Goodhart who wrote this great book called “The cancer Survivor’s Companion: Practical ways to cope with feelings after cancer”.  Frances is a clinical psychologist and it’s a real privilege to hear from her because she genuinely cares about people like you and me who go through these tough times.  Today, Frances shares some fantastic insights and practical tools to tackle cancer that you can start applying right away: Why it’s hard to bounce back after cancer How to manage anxiety and conflicting emotions Finding emotional backup when the going gets rough On dealing with anger How to get relationship issues out of the way The importance of exercise after treatment How to manage your energy better Step by step relaxation technique you can apply anywhere Using visualisation to help you relax How to break the vicious cycle around lack of sleep Finding way back to sex and intimacy and much, much more! Links About Dr Frances Goodhart The Cancer Survivor’s Companion: Practical ways to cope with your feelings after cancer Episode 007: How To Use Your Inner Resources To Better Deal With Cancer Full Transcript Joe:                 Frances, first of all, what made you write a book on cancer? Frances:           I was working in a cancer psychological support service.  I was seeing a large number of people post-cancer treatment.  They were coming in for appointments.  They came in just incredibly apologetic.  It’s as if they felt embarrassed, guilty even about using up psychological resources for particularly at the end of treatment.  I would spend a lot of certainly the first session, and often many sessions, trying to reassure people that it was very natural, very appropriate for them to be coming to a psychological support service. What I wanted to do was to be able to add to my own voice by directing people to information that would illustrate that, that would reassure them that post-cancer treatment was valuable and important to address psychological issues.  I couldn’t find a book anywhere because I was particularly looking for a book because I feel that seeing things printed out on paper that have been published just adds a weight to that information.  I couldn’t find a book anywhere, so in the end I thought, it’s not there, there’s a gap in the market and I better fill it.  That’s how I came about the idea of writing. Joe:                 That’s fantastic.  I think I found the same.  I found that there’s really not that much out there at all, in terms of real practical advice.  One thing I want to come back to, Frances, one thing you said that really surprised me is that you said that the people you actually spoke to, that the people felt guilty about coming to you and asking for help.  What’s with that? Frances:           Well, it may be something about being British.  I think as a nation there’s somehow an element of stiff upper lip.  I think there’s still an element of just keep pushing on through.  I think it’s changing hugely now, but this was ten/fifteen years ago, and I think there was still a stigma actually about seeking psychological input, seeking emotional support.  I think that people were bringing that, in a sense, in the consulting room with me. Joe:                 Yes, absolutely.  I think there is definitely that.  I think people feel guilty in a way.  I think I certainly did at one point because you feel that you’re supposed to deal with it on your own.  If you don’t, it’s somehow like a weakness.  Does that make sense? Frances:           It makes total sense.  Again, I think this is changing now, but ten years ago, I don’t think all of the medical teams were perhaps as aware of the psychological impact of the cancer diagnosis and treatment and weren’t exploring with their patients how they were coping emotionally.  I think if you’re going to a cancer service and you’re being told you need chemo, you need radiotherapy, surgery, whatever it might be, I think the teams were addressing psychological issues, weren’t signposting people onto psychological support services. I think that was a real problem because if your medical team are talking to you from the start about both the physical and the psychological consequences of diagnosis and treatment, then it’s just a natural part of the process.  If you are having to bring up the fact that you’re struggling or anxious or finding the whole process difficult emotionally as well as physically, that’s a tough ask, really, I think.  I’m really pleased that within the NHS in Britain, we’re now routinely screening for and thinking much more holistically about cancer support. Joe:                 That’s fantastic, Frances.  One thing I want to touch on is, you mentioned that when it comes to writing the book, you felt that there was definitely a gap, in terms of the approach to the book and how you were thinking about it, did you find certain patterns that came up when you were talking to people?  Certain themes that would come up over and over again, that maybe made you think, “I need to write this down”? Frances:           Absolutely.  In a sense, I think the chapters in the book that I cover, in a sense, illustrate most of those areas.  The overarching issue, I think, for people was anxiety, was fear of recurrence.  There was a lot beyond that, as well.  I think that cancer diagnosis and treatment and then coming through the other side, it just inevitably makes the people who were coming to see me, I recognized that was a self-selecting group, and other people may be able to just put treatment behind them.  The people that I was seeing were acknowledging impact on mood. I think particularly at the end of treatment, there are huge expectations that you’re going to feel elated, excited that you’re going to get back to normal very quickly.  Actually, in my experience, that’s not what happens to people.  Then I think, again, that array of distress, guilt, shame, low mood, sometimes a clinical level of depression, impact on relationships, sex life, of course.  That was something that, again, being British, we’re not always comfortable in talking about.  Actually, it’s really key to look at and to acknowledge and to talk about.  I think that people’s self-image is often really profoundly altered by a cancer diagnosis and treatment. Then the interface between psychological and physical, I think people were often bringing issues around sleep, around fatigue, around some of the consequences of chemo brain and memory issues.  I suppose those were probably the key themes that struck me. Joe:                 That makes so much sense, Frances.  One of the things I really love about your book is that it’s so practical, it’s so heads on, it’s got so many things that you can apply today in real life.  Cancer is such a difficult place to be, right?  You’re constantly in between tests and treatment and visiting specialists.  How do you deal with worries, with stress, with anxiety? Frances:           Thank you, Joe.  Thank you for your comment about my book, but also for picking up the fact that it’s a practical book, because that was so important to me, to create this companion in a sense, that people can carry with them, can dip in and out of, and pick out practical techniques.  In terms of managing worry and anxiety and fears, I think the first thing I would say is you don’t go through cancer or beyond cancer without those emotions.  I just don’t believe anyone is super-human enough to face all of that without some level of anxiety.  I think that sometimes we put pressures on ourselves and we have expectations of ourselves that are super-human, that are beyond what any of us can manage. Partly, I think in terms of managing anxiety, one of the things is not to build it up into something greater than it is.  You just recognise, okay, today is a worry day, or actually I’m coming up to a check-up moment, my mind is going to be racing, I am going to be anxious.  Not building on that anxiety by feeling that somehow, you’re not coping, you’re not managing.  That’s the first thing.  I think just being able to acknowledge and at some level accept, okay, this is an anxious day for me today, that’s okay.  It’s not going to have any impact on me long-term.  That’s the starting point.  I think that there are also very practical things that one can do to stop those thoughts from dominating. I don’t think you can stop them from coming into your mind.  I hope that’s one of the themes that comes from my book, this isn’t about making you go through life without emotion, it’s just how do we manage it?  With worries, write them down.  If you put them onto paper, they’re out of your head.  I think our brain is this extraordinary organ that works once we’re anxious.  It seems to want to keep us anxious.  We will mull over, ruminate, repeat anxious thoughts.  Actually, if you can just write them down, that’s a starting point, that can help.  I think the other thing to do, another thing, is to try, I recognise it’s not easy, but try to give yourself a part of the day where you say, “Okay, now it’s my worry time.” You actually allow yourself to look at those thoughts, to let them come into your head, to explore them, to examine them.  You do that for a time limited period of time. I think sometimes this idea of just don’t think like that, push those thoughts away.  Sometimes when we’re strong, we can do that, but other times we can’t.  I think just saying, “Okay, I’m going to have ten minutes of worry time now and then I’m going to cook the kids supper or watch a TV program or call a friend”, so that it’s time limited.  I think that there are relaxation strategies that one can use.  Again, not to make the thoughts go away but just to help them feel like they’re more controlled.  Then I think the other thing is that worries, and anxieties sometimes need to be explored and verbalised, but also looked into. If you find a useful source of information, use that, look at that, but be very careful about Dr.  Google.  Sources of information that we don’t know how reputable they are, they can increase anxiety.  Actually, if you want to look at some of your concerns and you have a website or a book that you’ve been recommend or that you just feel instinctively has been helpful, use that. Joe:                 That’s fantastic, Frances.  I love it and I especially love the tool about worry time.  I haven’t obviously used it just yet, but it intuitively feels just right. Frances:           Thank you.   I think what intuitively feels uncomfortable to me is this idea that one simply pushes worries, distress away.  I think that can work for a while but actually, long-term, I have a concern that it actually over time allows the distress to build up.  I think that idea of just accepting, yes, I have some worries, let me look at them, but not look at it so that it’s disrupting your whole day. Joe:                 Absolutely.  You mentioned that it is incredible stressful.  That makes me start to think about the fact that many people don’t get the emotional support that they need from their friends, from their family, from their co-workers, is that something you come across?  If so, what should you do if you feel overwhelmed and when you feel alone? Frances:           Thank you.  Yes, of course, I come across people who feel incredibly alone.  I remember a very powerful session I had with a man who talked to me, he said, I went into this room full of family and friends, I think it was a party setup to celebrate his successful end of cancer treatment.  He said, “I was surrounded by my closest family and friends and I’ve never felt more alone.” That has stuck with me.  I also think that emotional support is an incredibly difficult thing for family and friends to provide.  I think that a lot of the time, people going through cancer and people after cancer treatment don’t always know for themselves what would be helpful.  One hour talking would be helpful. The last thing someone wants to do is to talk.  I do want to acknowledge that I think it’s a minefield.  Support from family and friends is really difficult to provide at times.  Of course, there are amazing intuitive, supportive family and friends who get it right, but I think a lot of the time, people get it wrong.  I don’t think they mean to, I’m quite sure they don’t.  I think people long to help and support, but they don’t always know how to best do that.  That’s where I really think finding a listening ear, finding whether it’s a psychologist, a counsellor, an online cancer support chat room. I just think that sometimes what people need is the chance to talk, to think, to reflect with someone who isn’t emotionally involved themselves.  I would encourage people to think about that, not to see seeking outside help as weakness.  Very far from it.  I see it as a very positive, proud step that’s part of the armoury of tackling cancer.  It doesn’t replace support from family and friends, it’s just a different way of seeking emotional backup, I guess. Joe:                 Absolutely, Frances.  I couldn’t agree more.  I also have a deep belief that if you’re going through cancer or after cancer, or wherever you may be, that you should use every available tool at your disposal to help you get through it. Frances:           I couldn’t agree with you more.  I’m quite sure that there are a whole raft of approaches and tools that I don’t know of.  I would say to people, follow your instincts.  If you think something would be helpful, try.  There’s no harm in trying things out. Joe:                 Absolutely, because you’re going through an incredibly rough time and you’re experiencing a whole range of emotions.  At times, you feel angry.  Speaking of angry, Frances, is it okay to be angry when you have cancer?  How does it work? Frances:           Not only is it okay, I think it’s completely natural.  At times, really helpful to acknowledge anger.  I think cancer is a threat.  Cancer is just the most enormous threat that most of us ever face and our natural instinctive response to threat is the fight/flight mechanism.  The fight bit is a very strong part of that.  I don’t think most people can go through cancer without experiencing and at times, expressing anger.  What I think is important is firstly that the anger doesn’t impact on your treatment. Secondly, that the anger doesn’t irreparably damage the relationships and the support around you.  Obviously, you need to be able to manage and control the anger, so that it’s not hurting either yourself of other people.  Actually, I would say beyond that, express it.  Find a place either with somebody that wants to come with you or on your own, shout, scream, let the anger out, punch a pillow, go for a run if you can.  Just never hurt anybody else or yourself but let it out and express it. Also, don’t forget, that you can also say sorry to someone.  If you’ve shouted at them or you’ve responded in an angry way that isn’t your usual style, just acknowledge that and acknowledge that this isn’t how things are always going to be, it’s just that you’re under threat and you’re angry. Joe:                 Absolutely.  That makes so much sense, Frances.  All the normal rules apply.  If you screwed up, it’s a good idea to say sorry. Frances:           I think sorry often seems to be quite a hard word for many of us, but it’s a good one. Joe:                 I wouldn’t really know because I’ve never been wrong in my life. Frances:           Of course, Joe, of course.  Should we discuss that with your friends and family? Joe:                 Yes, I’ll definitely call my wife over to talk about that.  Frances, speaking of that, from personal experience, I know that many relationships are tested during cancer.  We spoke about this earlier, about friends, about all this stuff.  What advice do you have in this area to avoid common pitfalls and misunderstandings and so on? Frances:           Thank you for asking that.  I completely agree with you.  I think the impact on relationships is one of the most profound impacts of going through cancer and treatment.  Again, I think saying sorry when one needs to, both sides, it is worth considering.  Actually, at a more practical level.  I think the advice I would give is to really try to listen to each other.  That’s an easy thing to say, how do you actually do that?  In the book, I talk about trying to bring, in your own personal relationships, to bring some of the structure of therapy sessions into that.  In a therapy session with a couple, I start by getting each member of that couple to talk about why they’re there and to talk about their concerns and their issues.  I don’t let the other person interrupt.  You’d be surprised, actually, how hard that is.  Actually, maybe you wouldn’t be surprised. Joe:                 I’ll take it as a compliment. Frances:           I think that thing of that actually in a relationship and friendship, often conversation is a rapid two-way process.  Actually, just when you’re dealing with such deep and profound emotions around cancer, try not to interrupt.  Listen to each other, let that person, that first person talks until they’re talked out.  Then the second person gets the chance to reply.  I think the other thing about therapy is that it’s time-limited.  I think a lot of times people are anxious about really talking or listening to each other, because they think, “We’re going to open this can of worms and we’re never going to be able to stop.” I think saying to each other and setting an alarm, saying, “We’ve got an hour, or half an hour” – I wouldn’t do more than an hour, really.  It might be 20 minutes, that you just – and then you set the alarm, then when it goes off, you draw it to a close and you stop.  I think having a way to bring these deeply, at times, distressing conversations to a close actually can help you start them.  The other thing is, try, if you can, not to have these conversations in the bedroom, in your kitchen, in your sitting room.  If you can, be somewhere outside of your home.  I think, again, in therapy you’re outside of your home, and I think that means that the home doesn’t get contaminated with all of those articulated expressed feelings. Joe:                 I love this advice, Frances.  Really, it’s another theme that I’ve just picked up on, this idea of time-boxing.  I think that’s really fantastic, like putting this time box around your worries, putting a time box around talking things through.  I think that these are fantastic tools.  Frances, what about fatigue?  It’s something that affects pretty much everyone going through treatment, how can you manage your energy better? Frances:           Again, I think at times I may sound a bit repetitive, but I think one of the things is look at the expectations of yourself and try to be kinder or simply more realistic to yourself.  Going through cancer treatment and coming through cancer treatment, your body has been through the most gruelling experience and you are simply not going to have the same energy levels.  Really try to prioritise things, work out what is the most important thing for you to be using your limited energy on and then let some of the other things go.  It doesn’t mean they’ve gone forever. It might be, you might decide, I never want to do the hoovering again.  More seriously, I think it’s about just prioritizing what you need to focus on.  I think the other thing is just building in planned, structured breaks or rests in your day, so that you’re not only resting when you’re exhausted.  You’re actually trying to give yourself some downtime before you’ve become worn out.  I think that’s something I would really recommend to people, try to rest before exhaustion has kicked in.  I recognise that for some people, even the term “rest” is an unforgettable one.  Change the language.  Talk to yourself.  Don’t say, “I’m going to have a rest”, say, “I’ve got some downtime, or I’m going to have some restoration time, or I’m going to take a break.” It doesn’t have to be rest, but it needs to be conserving your energy. Don’t look at is as self-indulgent or weak.  I sometimes prescribed it.  For my clients, and sometimes they needed me to do that, but I think it’s really important to – as part of your wellbeing – to look at your energy levels and conserve them, but, and this is a big but, I also think that counter-intuitively you also need to look at your exercise levels.  You need to look at your fitness levels.  I know for many people it’s very counter-intuitive, but our bodies decondition so quickly.  I think just having some advice from your medical team about how to exercise.  What’s safe?  What’s appropriate?  What’s comfortable?  How to build up your exercise and build exercise into your daily routine?  Actually, does start over time, in fact, rather than to tire you out, it helps to build up your energy reserves again. Joe:                 That’s fantastic advice, Frances.  I remember that when I was going through treatment, my oncologist recommended that I do walks every day.  I started doing it every night.  It was pretty tough sometimes, but it actually helped me to clear my head and I was actually incredibly grateful because it made me feel so much better and it became something that I’m doing to this day now, more than a year from treatment. Frances:           Yes, I’m so glad to hear that.  I can’t believe I’m saying this, I’m an old-fashioned type person, I grew up thinking if you feel ill, if you feel tired, rest, stop.  Actually, I hated sports at school and in university.  I didn’t have a physical routine in my life and actually in the last decade, I think because of being a psychologist and because the information was so profoundly changed, that everyone said exercise is vital for you both physically and psychologically.  I thought, I better check this out.  I now go for walks or occasionally a little job, but it’s a daily part of my routine now.  That’s without having gone through a cancer diagnosis and treatment myself.  I tell my children, I tell my friends, I think it’s the most important psychological tool that we have. Joe:                 Good on you, Frances, and good on you for following on your own advice. Frances:           I don’t always do that.  I try. Joe:                 I love what you said about managing your energy with respect to resting even when you’re not exhausted.  I know that when I was going through treatment, my first round of chemotherapy was again counter-intuitively a lot tougher for me because I was pushing myself through exhaustion, through feeling tired and for my second and third rounds, I understood there were peaks, there were ups and downs, and I would actually take rest before that.  It allowed me to take it in a much better way.  Even in terms of seeing people, I would have friends or family come to the hospital and I knew for a fact that in the evening I would be completely smashed.  I said, if you want to come in, come in the morning.  That really helped. Frances:           Exactly.  I love the fact, Joe, that you had worked that out, that you were also able having worked that out to express that.  Again, that’s not easy, you’ve got family, friends, people wanting to come see you.  Actually, you knew that you had to prioritise your own wellbeing, you had to prioritise and safeguard your energy levels and you were able to articulate that to them, and they were able to hear that and respect that, too.  It’s a complex process. Joe:                 It is, absolutely.  Another thing, of course, Frances, when people say to you, relax, take it easy, sometimes it’s actually not that easy to do.  How do you actually do it?  Can you give us some specific things to help you relax? Frances:           Thank you so much for asking that, Joe.  I happen to have to go for a few blood tests myself recently.  I may at some point actually talk to the nurses who were taking the bloods about that, because they all say, “Just relax”, but they don’t tell you what to do.  I happen to have some strategies up my sleeve, so I know how to relax.  I just keep thinking, if only the nurses, the phlebotomist, the doctors, whoever is doing the blood test or whatever intervention it is, could actually say to someone, “What I’d like you to do is make your out breath longer than your in breath.” That is a way of physically introducing relaxation. What you do, I tend to encourage people to count their breath in.  I say, “Take a breath in for four, hold it for two, and then breathe out for seven.” The out breath taking longer than the in breath, I don’t fully understand the physiology, and I probably ought to, but it induces relaxation.  I think that’s the first and, to me, the most practical relaxation skill.  Your out breath longer than your in breath.  Find your own root, find your own way of counting.  Some people like to think about it visually.  They like to imagine breathing out through a straw or trying to keep a feather up in the air. Anything that makes your out breath longer than your in breath.  That’s the first thing.  Secondly, there’s abdominal breathing, that’s where you put one hand on your chest, one hand on your tummy and you take a breath in.  A deep breath in.  You make your tummy, the hand on your tummy move out further than the hand on your chest.  Again, that introduces a deep level of abdominal breathing that induces relaxation.  Then the third thing, again, a practical strategy is something that I call muscle tense release.  Again, don’t get caught up in, “Have I clenched my fists and raised my shoulders?” It doesn’t matter how you do it, just tense your muscles, clench them up, talk yourself through it.  “Okay, my muscles are tight and tense, I’m holding them, I feel it, they’re hard”, then you very slowly and gradually release that muscle tension.  You let your fists gradually open.  You let your shoulders drop down.  You reveal the release.  You actually talk yourself through.  You say, “I can feel relaxation flowing through the muscle groups that I’ve tensed.  There are a lot of apps on the phone that you can use.  You can find scripts to help you with muscle tense release relaxation.  Again, as I say, don’t get caught up in how to do it, just find a way to tense some muscles and then release them.  Then focus your attention on the relaxation flowing through. Joe:                 That’s fantastic advice.  One of the things that helped me, Frances, especially, for example, when I was getting something in my hand, was to visualize something positive.  For me, it was an image of me playing with my son, for example.  That took my mind off whatever was happening.  It helped me relax.  What’s your take on that? Frances:           I think that’s great, and thank you, because the relaxation strategies that I was talking about are quite physical relaxation strategies.  Actually, thank you, because it’s really important to recognise that you can also relax your mind using visual imagery.  I really do try to imagine myself on a beach and I can tell you, in Britain in February, it’s quite a challenge of the imagination, but what it does, and what I think what I would say, and I don’t know whether you did this with your visualisation, Joe, but to actually with visualisation, try to build in some of the other senses, as well, so that you’re actually thinking about, okay, so I can feel myself kicking the ball to my son. Imagine the laughter that you’re hearing from him.  Think about what you can feel.  For me, with my imagery of the beach, I’m actually almost trying to feel the warmth of the sun on my skin, I can hear the lapping of the waves on the beach.  I can feel the sand between my toes.  I can smell the sea air.  Use your imagination and build in all of those senses.  Then you can really take yourself out of the horrible medical setting that you’re in, to a place that’s a better place for you. Joe:                 That’s fantastic, Frances.  I love your advice.  That’s a whole different level of sophistication to that visual imagery.  That’s great.  Frances, another thing I want to talk about is sleep because that’s a problem.  Sleeping, is it before, during, or after treatment?  Why does it happen and what are some of the steps that you can follow to have better sleep? Frances:           I think the diagnosis and then the treatment of cancer and, as I say, post-cancer treatment, sleep is incredibly disrupted for all sorts of reasons.  Obviously, I’m a psychologist, so mind racing is going to be the top of my list.  Your mind is going to be racing with all sorts of thoughts.  I think that the treatment that you go through has a gruelling affect on your body, that impacts on your body’s natural rhythms and sleep is such a habit.  Changes to the routine, cancer may disrupt your usual routines in a really profound way.  It’s not at all surprising that sleep is disrupted.  I think the other thing about sleep is that it’s at night time that I think the loneliness and the isolation, and the fears kick in again back to mind racing.  How do you manage that?  Well, in the research I did for my book, I was really interested to discover that even without a cancer diagnosis or treatment, people worry a huge amount about sleep. They think that we overestimate how much sleep we actually need to function.  The first thing I would say is, actually, if you’re having a bac night of sleep.  Again, try not to catastrophise the: My next day is going to be ruined, I’m not going to be able to manage the next round of chemo, whatever it might be that’s going through your head.  Just reassuring yourself that you can rest, letting your body just loosen and unwind and lie down.  That in itself has a deeper effect physiologically than we realize.  That’s the first thing.  I think the second thing I would say is, is really look at your sleep habits.  Try not to let cancer diagnosis and treatment disrupt those sleep patterns too profoundly.  Try to go to bed and get up at roughly the same time each day. If you have a disrupted night, it’s very natural to think, “I’m going to try and catch up during the day and I’ll have some naps and rests and sleep in the day.” Actually, if you can, rest but don’t sleep during the day, because then you won’t perhaps sleep or get off to sleep as well when you’re then trying to do so at night.  Look carefully at your bedtime, the time you get up, and this idea of compensating for lost sleep.  I think that can get one into unhelpful habits.  I think another thing I would say is, we can get into the habit of almost associating bed with lying awake and worrying.  If you’re aware that that’s something that you do, that you almost start to worry the minute your head hits the pillow, actually try to break that association. Look at finding a way to maybe just have a chair in your room, near your bed, so you that instead of lying in bed, you just get up and you’re warm and comfy, in a nice arm chair, then when you think you’re about to fall back to sleep, then get back into bed.  Try to have bed the place where you sleep and not the place where you lie awake worrying.  Then, at a practical level, have a notebook and bed by the bed.  I know I often have my thoughts about, “I need to order that, or get that for my daughter, or sort something out.” Actually, just being able to write it down helps to allow me to put my mind at rest.  I think those would be the things I would suggest. Joe:                 Yes, that’s great advice, Frances.  I definitely feel like I have to write something down or I’ll forget, and the world is going to end. Frances:           Exactly.  The middle of the night is such a tough moment for that – exactly. Joe:                 One thing you touched on, Frances, is cancer disrupts so many things in our lives, during treating and after treatment, as well.  That includes sex.  What would you say to someone?  How do you go about making that better?  How do you go about improving it?  You’ve got a lot to deal with but at the same time, you want this to be just a normal healthy part of your life? Frances:           Absolutely.  I think it comes back to actually talking as a couple together.  Acknowledging fears.  I worked with a woman who was really so distressed by the fact that she and her husband had stopped having sex and she felt all the insecurities associated with that.  Actually, what happened was that eventually she did agree to invite her husband to come in and meet with us jointly.  Actually, what it turned out was that he was deeply loving towards her, still very attracted to her.  She had thought that he no longer felt any physical attraction to her.  That wasn’t the case at all.  He was absolutely terrified of hurting her.  She’d had a mastectomy and he was really anxious about touching her. He also had found some really wrong site that said that after chemo, a woman’s risk of having a heart attack during sex could be increased.  There was no basis to this.  I don’t even know whether that was actually what he had properly read.  That’s what he had taken from this.  He was just really frightened about initiating physical contact at all, let alone sex with his wife.  We talked that through.  Then what we did, they hadn’t had sex for months, if not for a bit more than a year.  What we talked about what just not to go straight back into sexual intercourse, but to find a way just to resume intimacy together. I’m really conscious that people going through treatment, and some of the treatments, there’s no getting around, that some of the treatments do have an impact on sexual function.  As a couple, I think it’s about finding ways to talk about it and finding ways to maintain a loving, physical intimacy with each other without or despite the impact of the cancer. Joe:                 That makes so much sense, Frances, because ultimately, yes, like you say, intimacy is so much more than sex, and this is what we all think, this is what we’re all looking for to be understood, to be loved, to be cared for, and for our partner to show that in the right way. Frances:           Exactly.  I do think it is so hard for the partners who may have been with you through those most intimate but awful moments of treatment and side-effects.  It can, for some couples, change how they feel about each other’s bodies.  I think the point is, exactly as you’re saying, to look at the breadth of love and how one can express love and intimacy, and not to get caught up with it.  It has to be intercourse straight away. Joe:                 That’s right, not to get caught up in the mechanics or that it has to be a certain way. Frances:           Exactly. Joe:                 Fantastic, Frances.  I’m sure there are things that get overlooked by people when they’re going through cancer or after cancer.  What would you say are one of the biggest things that tend to get overlooked? Frances:           I think the biggest thing is actually being kind to yourself and really looking at the expectations that you have of yourself.  I think people expect themselves to be strong, skilled, competent, confident, not all the time, but a lot of the time through this whole process.  I think that there’s something about just recognising the inevitability of psychological ups and downs, in the same way that you will have physical highs and lows.  I think if I could train oncologists and oncology nurses, I just think, just talk to people about the fact that they are going to find this hard.  That they will go through it.  Those deep moments of doubt, anxiety, anger, fear, depression, and just acknowledging that, you don’t get caught up in it so much.  Nor do you start to add in self-punishment, guilt, all of those extra emotions on top of that. Joe:                 Absolutely.  That’s fantastic advice, Frances.  What would you say to someone, what is the best advice you can give to someone after cancer? Frances:           After cancer, I want to celebrate with someone, I want to join in with that excitement, that achievement involved with all of that.  I think that the thing that I would add to that wonderful news is that it’s the start of a new chapter rather than the end of the story.  I know that sounds a bit trite and not very practical.  I think it is really important.  From my experience, what a lot of people do is they actually, the treatment is so gruelling, and they just have to keep putting one foot forward.  They find a way to get through the treatment.  I think, for many people, it’s only after treatment and the successful complement of treatment, that they actually begin to process emotionally what they’ve been through.  I think not everybody does this, but I think the majority of people do.  I would just like that to be just acknowledged and highlighted for people at the end of treatment.  Celebrate but also be aware that there may be more complex emotions than you expected. Joe:                 Yes, that’s fantastic advice, Frances.  I know that with cancer, things will never be the same, but at the same time, like you just said, life after cancer is a new beginning and a chance to do things in a different way.  That, in many cases, is doing things in a better way and starting things that you may have missed out on.  Now, every day is really a present that you receive and it’s up to you with what you do with it, isn’t it? Frances:           Absolutely.  I think you described that perfectly, Joe.  The only little thing I would add in is that there will be days when you wake up and you don’t think it’s a present.  It’s a bad day.  You’re in a bad mood.  That’s okay, too.  I completely agree with you.  It’s about what you make of this new chapter in your story. Joe:                 Exactly.  If we are to take this present analogy even further, I would add to that that maybe those bad days is one of those times when you got a present you didn’t want, so maybe you can put that to the side. Frances:           Exactly.  Yes. Joe:                 We probably exhausted this analogy about the present.  Frances, I loved your book, I think it’s fantastic.  If someone wanted to check it out and check out your other books, what is the best way to go about it? Frances:           Thank you so much.  I really appreciate your kind words about the book.  Also, the chance to tell other people about it.  In Britain, I believe that the publisher, we sent a copy of the book to all of the public libraries in Britain.  Whether they’re still there, I don’t know.  Obviously, Amazon is probably the easiest place to get hold of the book.  What I would also say is, if people feel comfortable in talking about it with their medical team, if you can check whether the medical team have their own little library of resources for their patient group.  That would be a wonderful way of seeing if you mentioned it to them, if they have the funds to buy a couple of copies.  Then lend it out to people. That would be a great way of getting the book.  I think it is known about, but it’s a little bit haphazard.  Anything that tells people, look, there is this particular resource, I’m very appreciative of.  As I said, it’s on Amazon, it’s in paperback.  It’s not hugely expensive.  I think it’s about £8.00 in the UK.  I’m afraid I don’t know what it costs in the other countries. Joe:                 That’s nothing, Frances.  I liked what we talked about, you should use every tool that you can find.  This happens to be a fantastic tool.  Thank you so much for your time, Frances.  That’s been incredibly insightful.  Thank you for your practical advice and for the fact that you clearly still care about this area and you care about the outcomes for people. Frances:           Joe, I can’t thank you enough.  It’s been just a delight.  I was a little bit nervous at the start.  I just reminded myself, thank you.  I do feel very passionately about it.  I love the chance to talk, so thank you for that. Joe:                 Thank you, Frances.  I appreciate it.

When it comes to cancer, we are so focused on the specialist who’s treating you, and rightly so because your oncologist or surgeon or your urologist is absolutely crucial in getting you through it. But what about the general practitioner, the family doctors, what role do they play and how can they help you in your fight against cancer?  Right now, you’re going to hear from Jon Emery, the professor of primary care cancer research at the University of Melbourne.  Jon will reveal why the GP is your best ally in your war on cancer and is going to set the record straight on cancer and how it relates to primary care, including: Proven online resources to find the right information on cancer The fear of cancer recurrence The role of GP as advisor and counsellor How primare care can help after cancer How can primary care physicians pick up cancer early Why Big Data and artificial intelligence can help GPs to detect cancer Why the GP is your best ally in your war on cancer Links Jon Emery Academic Profile Survivorship care in general practice: supporting patients to live well Australian Cancer Survivorship Centre Better Health Channel Cancer Council Victoria Episode 009: Why The Oncologist Is Your Guide Through Cancer Full Transcript Joe:                 Jon, first I really want to ask you, the family doctor, the general practitioner, this is really the first line of defence against cancer.  It’s up to him or her to understand what’s going on, to send you for tests, to forward you to the right specialists.  How can primary care physicians pick up cancer early? Jon:                 There are two ways, really, to think about earlier detection of cancer.  One is through screening tests.  These are tests that are offered to people without symptoms and then they are obviously trying to detect people when they present with symptoms that may be due to cancer and investigating those symptoms.  Maybe if we just start by thinking about screening tests.  There are three national screening programs.  They are the programs that the government funds because they’re very strongly based on evidence and they’re the screening programs for cervical, breast, and bowel cancer. The GP has an important role in ensuring people are up to date with their screening tests.  Particularly promoting some of the tests which are not being very well-used at the moment.  The bowel cancer screen test is probably the most relevant in that context.  At the moment, it’s sent in the post once you hit 50 and only 39 percent of people actually bother to do it. Joe:                 Wow, that’s pretty crazy. Jon:                 Yes.  GPs can play an important role in reminding patients that the test will be coming soon and encouraging them to do it.  It’s a very effective test and ensuring that your patients are up to date with those screening tests are an important strategy in early detection.  The bowel screening test is the one that’s least well-used, it’s probably got the strongest evidence for it in terms of detecting cancers early and preventing early deaths from those cancers.  If you think about symptoms, this is where it’s more challenging.  The majority of cancers, even for those where we have a screening test, they present with symptoms. Most of the patients, when they develop the symptoms, they go to see their GP.  It’s challenging because the symptoms of most common cancers are also symptoms of much more benign, non-cancerous conditions.  That’s where it becomes very difficult.  In medicine, we talk about something called, “Red flag symptoms”.  These are the symptoms that you really need to think about cancer is a possible cause of them.  Things like obviously a breast lump, rectal bleeding, coughing up blood, blood in your urine, losing weight is particularly in the context of other symptoms. Those are symptoms that should make you think about a possible cancer diagnosis and investigate.  In general practice, those symptoms are actually quite common, most of the time, they’re not going to be due to cancer, so if you cough up blood, then you have a less than five percent chance of that actually being due to lung cancer.  It’s much more likely to be an infection, but it’s a really important symptom to recognise.  That’s true for some cancers, but some cancers present with these red flag symptoms.  Other cancers present with much more subtle symptoms. If you think about pancreatic cancer, that presents often with a bit of indigestion, bit of back pain, a bit of tummy pain, but quite intermittent, so a loss of appetite.  As single symptoms, as a GP, you’re not immediately going to think about pancreatic cancer as a cause.  Most of the time, it’s going to be due to something completely different.  That’s why it’s the challenges of balancing out when to investigate somebody against waiting too long.  Obviously, perceive delays in diagnosis.  It’s difficult.  Some of it’s about ensuring that you have strategies that patients know to come back if their symptoms get worse or they develop new symptoms, that’s something called, “Safety netting.” Some of it’s around using some simple blood tests to begin with.  As it might, again, give you some clues that this is potentially a more serious cause for those symptoms.  Sometimes it’s about giving some initial treatment, again, ensuring that patients know to come back if their symptoms persist.  At that point, that might prompt you to think again and raise the likelihood that it might be actually this is an underlying cancer and therefore, you would go and investigate. We know some cancers are harder to recognise early than others.  They’re the ones that have these more non-specific symptoms signatures.  Things like pancreatic cancer, myeloma, ovarian cancer, these are the ones that are harder to pick up early because their symptoms are not quite such red flag symptoms. Joe:                 Yes, got you.  Absolutely.  That makes sense.  Jon, in terms of technology, can it help us to pick up things quicker and if so, how? Jon:                 Yes, there’s a lot of interest in new diagnostic tests that might allow us to investigate people with symptoms or as new screening tests, even.  If you think about there are different ways that this might be done, sometimes it will be a new blood test that’s picking up early markers of cancer in your blood and there’s a lot of research going on in these types of biomarker tests.  Not many yet have been shown to have been specific enough to actually use them in general practice. You get a lot of false positives.  There’s a lot of funding going into blood-based tests, then there are new imaging tests, so ultrasounds and CT scans, PET scans, and better uses of those tests might allow us to detect things.  Then there are even more interesting things, so there are these things called, “Volatile organic compounds”, these are things that you breathe in and out.  Some colleagues of mine are working with a group in Cambridge who are developing a breath test for cancer.  It picks up patterns of chemicals that come out in your breath that are potentially associated with a number of cancers in your lung but also in your digestive tract. There’s some really interesting work.  Still a bit early days’ yet to be using it in general practice.  That’s another test that’s not invasive but might actually be a really interesting way of picking up both gut cancers and lung cancers a bit earlier than currently. Joe:                 That’s fantastic.  What about things like artificial intelligence? Jon:                 Yes, that’s a really good question.  The other thing is looking at large data that exists already.  There’s been some early work around looking at large data sets from general practice, and electronic records in general practice and starting to mine those to look for patterns of symptoms, abnormal blood tests that might allow you to have recognised a cancer earlier on.  We’ve been doing some early work in that area of diagnostic algorithms based on patterns of these tests that might prompt a GP to consider a cancer diagnosis sooner than they would. Our brains are fallible, and we have various cognitive biases when we’re thinking about diagnosis.  We think that this approach to using computerised algorithms are rising from artificial intelligence mechanisms might in the longer term pick up earlier signals based on symptoms and blood tests, particularly in these cancers that are harder to diagnose because of their non-specific way that they present, that just might prompt GPs to think sooner that this is a possible cancer diagnosis, and somebody might need an earlier investigation. Joe:                 Absolutely.  You know, Jon, as somebody who was really going through cancer, myself, and as you can imagine, I’ve done a lot of tests, and so I always imagine that there is obviously a person on the other end who’s looking at those tests with blood markers.  Whether they are CT scans or x-rays or whatever it might be.  How does that process work, and can technology perhaps help in that as well to pick up certain patterns? Jon:                 Yes, again, that’s another big growth area in artificial intelligence, is automated image analysis in radiology.  There’s some interesting work, for example, in mammography, and using automated analysis to pick up early signs of breast cancer that might have been missed by a radiologist.  Again, another growth area of use of AI to more systematically analyse subtle changes on a CT scan or a mammogram or so on, that might detect early changes sooner than a radiologist might.  Thinking about from a GP’s point of view, that may eventually lead to some automated image analysis of low-cost ultrasound machines. A GP might have their own ultrasound machine and have automated analysis of that, as an example.  The other interesting area in automated analysis is in skin cancer, and automated analysis of images of the skin using things like a domestic scope or even a mobile phone.  AI is a really big growth area in terms of another key strategy to detect cancer earlier. Joe:                 Would that help, also, with going for periodic check-ups and notifying people earlier about things that could potentially could be red flags? Jon:                 Yes, so potentially, and there’s an interesting area in self-monitoring apps.  Again, we’ve been doing some work in skin cancer about using apps on the phone to monitor changes in your moles as an early marker of change for melanoma.  Similarly, there are these symptom check apps that you can use that, again, have symptom-based algorithms behind them to prompt patients to go and see their doctor if they have certain important symptoms. Joe:                 Yes, that’s fantastic, especially for a hypochondriac like myself. Jon:                 That’s the danger, of course, that they can cause too much anxiety and generate a lot of unnecessary worry, because we all have symptoms most days if we think about it. Joe:                 Yes, absolutely.  It makes it a really tough job for the GP, because how do you get the right balance between not jumping the gun and not leaving it late? Jon:                 That’s right and that’s part of the skill of being a GP and they take into account a lot of other factors.  Obviously, in the context of cancer, cancer is more common as you get older.  You count for certain risk factors, as well, that you know put people at a higher risk of cancer, whether it’s their family history or if they smoke and so on.  You use all of that information, obviously, the examination as well.  All of these factors are used to help a GP weight up whether they should be investigating somebody sooner than others.  It’s a difficult balance. Joe:                 Yes, absolutely, because I guess when you’re dealing with cancer, you’re also in between test results and treatment options and you’re working with different specialists.  What do you believe is the role of the GP, of the primary care physician in all of this? Jon:                 Once a patient has had a diagnosis of cancer and they’ve started what is often a complex series of treatments, seeing lots of different specialists, it can be very overwhelming.  Often, patients lose touch with their GP at that point.  Actually, there’s still an important role we think for the GP during cancer treatment.  They can help try and make sense of what is happening with that patient.  They can provide a lot of important psychological support during their treatment.  They’ll often be managing their other health conditions, a lot of patients with cancer will have other chronic conditions, as well. The GP needs to be kept informed of what’s happening from a cancer point of view, from a specialist team, and to be aware of the side-effects that the patients might be experiencing.  The impact that might have on some of their other chronic conditions, too.  GPs can play an important coordinating role in showing that you’re seeing the right specialists that are managing some of the common side-effects that people might be experiencing.  Providing that important support for both the patient and their family and then managing their other health problems at the same time. Joe:                 Absolutely, that makes so much sense.  We sort of touched on this, but many people go online to try to find answer when they’re in pain, maybe when they have side-effects from the treatment.  Is that a good idea and when should you go to the doctor? Jon:                 It’s difficult knowing when to go and see your doctor.  There are some very reputable sites that Cancer Council, for example, has some very useful information about common symptoms that might be due to cancer and therefore, should prompt you to go and talk to your doctor about that and have that checked out.  The Cancer Council websites are, from a cancer point of view, are very useful sources of information around both symptoms that are important.  Also, if you’re during treatment, they have a very useful helpline, as well, and you can actually phone up and talk to one of their nurse educators and get some very useful advice from them, if they’re worried about all sorts of things. The web is a difficult place because you can go searching and find yourself in areas where the information is not necessarily as accurate as you’d like it to be.  Going to a trusted source.  There are other trusted sources.  There’s something called: The Better Health Channel, which is a much broader health and information resource about health matters in general.  It can be useful to get a better understanding about existing health conditions.  During treatment, if you actually have cancer and your receiving treatment, then hopefully your cancer centre will actually provide you with some written information, so that you understand your treatment and the side-effects and reasons to phone up one of the cancer nurses or something, if you have problems. I think often it’s better to rely on some of the information that you’re provided with, or to contact the cancer centre that are treating you if you have concerns, rather than go Googling. Joe:                 Yes, absolutely.  That makes a lot of sense, Jon.  I feel like after my all-clear, any sign of trouble and I immediately think it could be cancer.  What do you think is the best way to deal with fear of cancer coming back? Jon:                 Fear of cancer coming back is a very common thing for a lot of cancer survivors.  We know that many people will struggle with this and particularly at times when coming up to a health check with their cancer specialist is a period when you’re obviously having tests to make sure you’re all okay.  That’s a very common period where, obviously, the fear that the cancer might have returned really starts to cause problems.  It is a difficult thing to manage.  For some patients, it can become very troubling. For a lot of patients, it’s about trying to ensure that patients are aware of the importance symptoms to look out for.  The fact that actually recurrence for many patients and cancer survivors, their risk of recurrence is quite small.  It’s partly trying to balance, so people aware that they often overestimate the risk that their cancer is going to come back.  Some of that, just better information around their actual risk and the sorts of important symptoms to look out for can be reassuring.  There have been a number of research studies that have looked at much more detailed psychological treatments.  Particularly for people who fear cancer recurring, it becomes very troubling. Group in Sydney, they’ve been running some trials of a course of psychological therapy for patients for whom fear of recurrence and become really very disabling.  They’ve got some early results showing that this very specific theoretically-based approach to fear of recurrence is an effective strategy.  Hopefully, that approach might gradually become available through psychologists more widely, as the results of that trial become more widely known.  For a lot of patients, it is just going to see their GP and talking to them about their symptoms.  GPs can often be quite reassuring, that actually the symptoms they’re experiencing are not an important sign of recurrence. Joe:                 That’s a great sign, Jon.  I guess a lot of the times, I never really thought about going to see my GP, even though she has been instrumental in terms of picking up cancer and supporting me through it.  That’s a great point.  Sometimes we don’t think of the general practitioner as someone who can really help get you through this. Jon:                 Yes, I think they play a very important role in that broader support and can be quite reassuring that you don’t necessarily need to be worried about a particular symptom. Joe:                 Yes, absolutely, continuing on the mental side of cancer, most folks go through fear and anxiety, maybe when they are going through treatment.  What’s your advice on dealing with that and if you think it might be all a bit too much, where do you turn to for help? Jon:                 A lot of cancer centres and all GPs, as well, will have access to psychologists who can be very helpful in providing strategies to help with anxiety and depression, which we know are quite common both during treatment and after treatment for cancer.  The GP alone, they’re very experienced with dealing with mental health issues.  Again, going to talk to your GP, if you’re beginning to experience signs of anxiety or low mood, they alone can be very helpful in both assisting how severe it’s got.  Whether psychological treatments might be helpful and therefore, referring you through Medicare to see a psychologist can be helpful.  They may just provide some counselling themselves and give you some other strategies to help with your mental health. There are some sort of broader lifestyle things you can do, physical activity is actually very helpful for a lot of reasons for cancer survivors.  Including in improving their mental health.  Getting into a regular physical activity regime can help with many of the side-effects of the fatigue, as well as the anxiety or the depression.  Meditation some people find very helpful, yoga, that sort of thing.  There are a whole range of different ways to help with some of those mental health issues.  For some, it’s about finding the ones that work well for the individual patients. Again, it depends on how severe things become.  There are obviously some drug therapies that some people may need to go on for a period of time, particularly for depression.  Often in combination with psychological therapies, as well.  Again, a lot of this can be access through your GP, but also the cancer centre will often have a team of psychologists and psychiatrists for people with some severe problems with their mental health during their treatment. Joe:                 Yes, that makes so much sense, Jon.  Is it common that some physicians are better than others?  Is that true and how do you find one which is suited to you and your needs? Jon:                 Yes, unfortunately, there probably is a variation in the healthcare system, a variation in personality type, quite apart from variation in quality in general of the delivery of care.  That’s one of the things, that as a medical researcher is one of the focuses of how you reduce some of that variation.  It is a fact that we do see variations in the quality of care sometimes.  I think the issue of finding a doctor who you get on well with and trust is really important.  Particularly, finding a GP who you develop a longer-term relationship with, who gets to know you over a period of time.  That continuity of care is one of the strengths of a good general practice. For a lot of reasons.  We know that actually that developing a trusted, long-term relationship is actually a marker of good long-term care and is associated with better outcomes.  Sometimes you do have to shop around a bit, unfortunately.  In Australia, general practice, of course, because you have the option to go and see any GP you like, recommendation is often good.  Personal recommendation.  Of course, there’s increasingly stuff on the web where you get reviews of practices, as well.  I think it is important to try and find a GP who you can talk to, who you think will listen to you, who will give you the time when you need it, and who you feel you want to develop that longer-term link with.  Sometimes it’s not always possible to see the same doctor every time. Actually, just even being in the same practice where they’ve got your records and all the information about you from your specialist, as well, all in one place is also important.  Going to see the same practice, even if you can’t always get to see the same doctor is also another way of trying to improve the quality of the care that you receive. Joe:                 Yes, that makes so much sense to me, Jon, that if you invest the time up front to find a good doctor and build up relationship with them.  Then it’s a preparation for eventually dealing with something like cancer.  It’s a really important investment.  I know I was lucky to have a fantastic GP and great specialists.  At the same time, Jon, I don’t think they said a word to each other.  I guess in my case, it worked out well, but I think sometimes that conversation might be needed.  How do general practitioners stay in the loop and how can we make that process work better? Jon:                 We know that communication between different doctors is often not ideal.  There are problems getting – with our current system – of sharing information that is often reliant on a still very old-fashioned systems of dictation.  Then the letter goes off to a secretarial pool and it might take weeks before it eventually gets typed.  It sounds extraordinary that hospital systems still rely on those rather old-fashioned methods of produced letters, even, let alone we have much better methods of communicating electronically in other businesses and so on.  It is recognized that there are structural problems in a lot of the healthcare system that rely on old-fashioned methods of communication. We know from a cancer survivorship point of view, there has been quite a lot of work around trying to improve communication between healthcare providers.  There’s been a lot of interest in what is called: Survivorship care plans.  Which are much more structured methods of communication, both to the patient and also to the GP.  The information that’s most relevant about providing care for that patient.  We’ve done some trials of providing that type of information to GPs in models where the care is more explicitly shared between the GP and the cancer specialist. We’ve shown that that is an effective way of improving communication.  Increasingly, cancer centres are thinking about how to implement this much more structured method of communicating between the specialist, the patient, and their GP, and other healthcare providers in that more structured way, and in a timely way.  There are well-recognised problems.  There are attempts to improve both the way the information is provider in a more structured and more useful way and ensuring that GPs are better kept in the loop.  In the longer-term, there is now something called: My Health Record, which is a federally funded approach to have a single core electronic health record. That will at least have a lot of the core information around health conditions, tests results and so on, that will be assessible to any healthcare provider.  Therefore, in a much timelier way.  That’s gradually being rolled out and from I think about August this year, the vast majority of the patients within the Australian healthcare system, even if they’re not aware of it, will actually have access to My Health Record, which is an electronic record, that will have information about the drugs they’re being prescribed, all the tests that they’ve had ordered on them and so on. GPs will have a core role in helping patients to ensure that that record is reasonable up-to-date about their various health conditions.  That, in the longer-term, we hope is a way of improving the communication around what’s happened to a patient between the different parts of the healthcare system.  It’s got a way to go still.  We think from a cancer survivor point of view, actually having an up to date My Health Record is a really important part of trying to improve that communication between different healthcare providers. Joe:                 Yes, that makes so much sense, Jon.  I know that medical experts can take a complicated case to a panel of experts to get their input, is there a process in place to allow a general practitioner to get a second opinion, like if they’re not sure about what is the best way to go? Jon:                 Yes, that’s interesting.  Obviously, in cancer care, there are these what are called: Multi-disciplinary meetings, where you have different specialists who will get together and discuss what the best treatment plan is for that individual patient.  Probably in cancer, that’s been the best developed model of really having good expert input from an oncologist, a radiologist, a surgeon, and a whole range of allied healthcare specialists, as well, to really plan what the best treatment is for that individual patient.  In general practice, obviously, it’s slightly different.  The GP is often seeing patients in quite an isolated way. Particularly in group practices, so where you have, increasingly doctors are not single-handed doctors, they work as part of a group of doctors in a practice with a whole team of nurses as well and other allied healthcare professionals.  That practice model, if we have a team of doctors, does actually allow better opportunities to seek a second opinion.  Whether it’s informally, just talking to one of your colleagues about a patient that you’re not quite sure what’s going on.  Sometimes it will be a more formal route, where there’s subspecialisation with a practice of GPs. You might find some GP saying, “Well, actually a colleague of mine has a particular interest in this area.” You might be offered that opportunity to see another GP in the practice because that’s their special interest.  I think as general practice becomes more complex and they take on a greater role in managing a lot of chronic diseases, then we might see a bit more of that subspecialisation within a general practice and within a team of GPs, so that different GPs have different areas of expertise, so you’ve got that potential for in-house second opinions. Joe:                 Yes, that makes a lot of sense, Jon, because I know from even personal experience that as we moved around and lived in different areas, you go and look at a website for a particular practice and you start to read about the doctors, and you can read about their different areas of interest and expertise, and you go, “Yes, that might be the person for me or for my son” or whatever.  That really makes a lot of sense to me.  Also, I know that survivorship is an area that’s really close to your heart.  What are some of the challenges that some folks have after treatment and what is the role of the general practitioner in all of this? Jon:                 Sure, I think increasingly the GP will have a growing role in cancer survivorship, as we move more toward what is called: Models of shared care between the hospital specialist and the GP, and in much more structured ways.  This comes back a bit to what we were talking about having better showing of information, with clearer guidance to the GP about their specific role in terms of caring for the cancer survivor, knowing which tests to order, in terms of monitoring a recurrence.  Knowing how to get rapid access back to see a specialist if they’re concerned.  In terms of the core cancer survivorship care, I think we will see a growing role for doing some of what would have been traditionally offered by the cancer specialists, but actually the GP will take on a greater role there.  As well, of course, as providing that much broader holistic care from a psychosocial point of view, and also managing other chronic conditions that cancer survivor may also have. Joe:                 Cool.  Thank you so much, Jon, for your insight and for your advice.  I really appreciate it. Jon:                 Well, thank you very much for asking me to.  Thanks, Joe.  

Listen, I think it’s fair to say that nutrition isn’t the first thing in mind when it comes to cancer but eating well can make a huge difference in dealing with cancer, during treatment and in recovery.  Today, I’m talking to Julie Lanford.  Julie is a cancer dietitian who is going to describe your nutrition needs during cancer.  Whether you find it difficult to eat at the moment, or you maybe you’re relying too much on comfort foods, or maybe you don’t really know much about eating well during cancer.  You’re going to get tons of fantastic in-depth practical advice from Julie that you can apply right now, including: Do we now have to give up bacon? What is evidence based advice and why it’s important Key myths and misconceptions about nutrition and cancer Dealing with taste changes during treatment Why plant based eating is important to you right now Simple rules of thumb for choosing good food sources The importance of exercise during cancer What is moderation when it comes to alcohol Great, healthy ideas for snacks What to do when you are not getting the results you want Links Cancer Dietician: Lifestyle tips for prevention and survivorship Episode 002: How Exercise Helps Crush Cancer Full Transcript Joe:                 Julie, thank you so much for doing this.  I really appreciate your time. Julie:              Sure, yes. Joe:                 Julie, I just heard that bacon and sausages are now considered to be on the grade on carcinogen by the world health organization.  That really ruined my week.  What’s with that?  Is that even true? Julie:                It is true, they were upgraded.  It’s been a couple of years, upgraded, whatever you want to call it.  It is a class one carcinogen, but I think it’s important to understand really what that means.  Just because something’s a class one carcinogen, you also have to have a lot of exposure before it will cause a problem.  Tobacco or cigarettes, they are also a class one carcinogen, but by smoking regularly, it increases your risk by double-digit percentages for cancer.  Eating things like bacon and processed foods, which is the sausages, they have the preservatives and additives.  It does increase your risk specifically for colon cancer, the increase in risk is small but it is something.  I always tell people, you know, I wouldn’t make a habit out of eating bacon right now.  It seems bacon is pretty popular.  I went to a restaurant the other day and it was like every other menu item had bacon on it.  I say somethings a habit if you do it three times a week or more, bacon is not something that I would make a habit out of, but if it’s something you eat once a month, I’m not too worried about it.  It comes down to how often or how much are you having at a time. Joe:                 That’s fantastic, Julie.  I think that makes me feel a whole world better. Julie:                Good. Joe:                 Julie, I know you’re big on providing information that is evidence-based, can you talk about what that is and why is that important? Julie:                Yes, so I think many people are confused about what evidence-based really means.  Just because a scientific study happened doesn’t make something evidence-based.  Evidence-based recommendations mean that there have been multiple well-designed studies showing the same results.  Enough to the point where we have consensus among scientists or medical professionals that there should be a recommendation around that particular issue.  I think where a lot of people get confused is just because a study was done, if that study was done in mice or rats or an animal model, or it’s only one study and there aren’t multiple studies going on about that topic. It doesn’t make it evidence-based.  It might make it interesting, but it doesn’t mean it’s something that we absolutely have to change our lifestyle around.  Evidence-based means that a body of experts have gotten together, and they rank the evidence.  If there is consensus that say something like fruits and vegetables are good for us, which generally everybody agrees upon.  There’s lots and lots of data on that. Joe:                 Yay. Julie:                Exactly.  There is an evidence around cancer and eating more fruits and vegetables and plant foods.  I think some of the other topics are interesting, but I think we should build our foundation around healthy eating on evidence-based recommendations from reputable medical bodies.  Then if you want to layer other things on top of that, that may have less evidence, but maybe it makes you feel good, or it makes you feel like you’re doing something additional, I think that’s fine.  We definitely want to focus on the things that have the strongest evidence. Joe:                 Yes, that makes so much sense, Julie.  How do you incorporate it into your daily practice?  Do you read research journals?  How does it work? Julie:                Well, there are way too many research studies for me to ever read them all, because I have to actually go out and educate people and not just sit in an office and read all day long.  What I do is rely on the strong science-backed evidence-based bodies.  In the U.S.  anyway, we have the U.S.  preventive taskforce for more screening type tests.  When it comes to nutrition and cancer, I spend a lot of time with the American Institute for Cancer research.  They have great information. Their website is: aicr.org.  They have actually an expert report where they rank evidence and they do updates, continuous update project is what they call it.  They have them around different types of cancer.  I tend to stay on top of what they are recommending and also, American Cancer Society has some good research, briefs and then the National Cancer Institute are also great places to go.  I tend to rely on people smarter than me to direct me in those things. Joe:                 As we all do.  Absolutely, because it’s so important to really look at the real data out there.  There are a lot of myths and misconceptions around nutrition and cancer.  What would you say are some of the biggest ones? Julie:                I would say the number one myth would be sugar feeds cancer.  People are constantly coming in asking me about that.  I call it a myth because there might be a little piece of truth that, yes, glucose is an energy source for cancer cells but it’s also an energy source for every cell in our body.  When you think about the term: Sugar feeds cancer, there’s nothing you would do about that.  It’s not like if you quit eating sugar, then the cancer cell will stop growing, it just doesn’t work that way. The way I describe it is that every cell in our body runs on glucose, or that building block of carbohydrates, which some people term sugar.  We don’t get to pick and choose which cell gets what fuel.  From a practical standpoint, it’s not helpful of a thing to say except to scare somebody and make them very anxious about the foods that they eat.  Of course, we want to use common sense, certainly we don’t want people to eat a whole lot of sugar-sweetened beverages and desserts all the time.  There is a common-sense balance.  That’s one of the top myths. More recently, I would say at least around the people that I see, some clients are a little bit afraid of eating meat or dairy products right now, based on some popular documentaries that are not sharing the strongest information.  I’m fine if somebody wants to not eat meat at all.  That’s a personal choice, but we don’t have good strong evidence that you shouldn’t eat meat.  You do have lots of evidence showing that you should eat lots of plants.  Whether you eat meat or not, you should still eat lots of plants. Joe:                 Okay, that’s great.  We know that the immune systems shuts off during chemo, is it a good idea to take vitamins or minerals that can boost your immune system? Julie:                Well, I would say there’s not good evidence to show that taking pill forms of nutrients actually does boost your immune system.  There is some evidence that shows that we don’t want people taking anti-oxidants supplements during treatment.  That it might counteract what we’re trying to do with cancer treatment.  There are mixed studies on anti-oxidants during treatment and so we air on the side of caution and we say, “If you want to eat food sources of anti-oxidants, or tea, like green tea, that’s perfectly fine.” We don’t want anyone to take really high doses of them in pill form. Joe:                 Yes, because chemotherapy is actually pretty good at changing your taste buds.  Sometimes you’re in treatment and sometimes beyond.  What advice do you have around managing that? Julie:                Yes.  Everybody’s experience is different, and it depends on what type of chemo and how your body reacts to it.  We do have strategies for all different types of issues that may come about when it comes to nutrition.  Specifically, around taste changes, a lot of times, we will have people, if you have a metal taste in your mouth from chemo, some people find it helpful to drink lemon water before they eat.  To not eat with metal silverware because that makes that metal taste worse.  You can use plastic silverware. For some people, their taste buds are real muted, so they don’t taste very well, so they need to use more spicy foods.  Some people have mouth sores and spicy foods bother them, so they need to eat bland foods.  There’s no one across the board recommendation.  It really depends on each individual and what they’re dealing with.  Then we troubleshoot based on that. Joe:                 Yes, right.  I remember there was a guy in my oncology ward who pretty much stopped drinking coffee, just because he had it during chemo and to him it was just disgusting.  Then I think he just stopped drinking it. Julie:                Yes, a lot of people, if it’s not a good habit, then it’s a positive thing that it forces them to change their habits.  Especially around those comfort foods that you’re really used to and then your chemo makes it, so they don’t taste good, that’s like adding insult to injury.  Well, I enjoyed drinking that coffee every day and now it doesn’t taste right.  That’s one more thing that I have to deal with.  When people lose their taste buds, they start coming back, I usually recommend that they try to optimize that and take advantage of that opportunity to train their new taste buds to really like healthy foods.  If they had habits that they’d been wanting to let fall away, they can train their taste buds to like better foods. Joe:                 Yes, that’s a great idea, Julie, because that could a conscious beginning of a new phase of life, where you eat better.  Absolutely.  What are some of the most important things to keep in mind when it comes to diet before and after treatment? Julie:                For most people who, let’s say, during treatment they didn’t have too many side-effects that prevented them from eating normal foods.  They’re looking at after treatment and the way I say it, how can they optimize their nutrition and optimize their survivorship.  I do programs here at the non-profit that I work for, and we focus on nutrition, exercise, stress management, and then medical management, which I think all are really important pieces of optimizing survivorship. From a nutrition standpoint, I really focus on the recommendation that cancer survivors follow the same things that we recommend for cancer risk reduction, which is essentially eating a plant-based diet, not eating too much of the sugar-sweetened beverages.  Not eating too much added salt and not eating too much of the red and processed meats.  I think what’s most important for people is to really focus on getting the nutrients that their body needs to function.  Especially as they’re healing up after treatment, where they might have had their treatment affected not just the cancer cells to get rid of those, but it also had effects on other parts of the body. There’s a lot of healing that’s going on.  Supporting that healing with good nutrition choices, good quality sources of nutrients that come mainly from food.  When you choose food sources of nutrients, you get a lot of variety of nutrients.  You choose lots of different colours in your foods, you’re getting a variety of nutrients and they’re all really important to promote good growth of healthy cells and also supporting the immune system.  We do promote a plant-based eating, whether that includes small portions of meat or not is a choose your own adventure.  Definitely focusing a lot on plant foods and making sure to get plenty of fruits and vegetables every day. Joe:                 Yes, also, Julie, you touched on colours and the fact that you should be mixing up foods of different colours, so how does that work? Julie:                By colours, I mean the colours in the foods as they’re grown, not like do you have Cool Aid there?  We’re not talking about fruit punch or colours like that.  What we want from the colours are things like red in the tomatoes, red in the watermelon, orange from sweet potatoes or carrots.  Oranges, yellow from a variety of things but squash.  When you eat all of those different colours, the colours really represent the type of plant nutrients that are in that food. You don’t have to have a degree in nutrition to figure out that when you eat a variety of foods, you get a variety of nutrients and your body will get what it needs.  We don’t want people eliminating all of one food group.  We want you to eat a little bit of every food group and we want you to eat a lot of fruits and vegetables. Joe:                 Yes, that makes a lot of sense, Julie.  Another area where we could open another can of worms here, but I know exercise is a good, and we could probably talk about that for hours.  It’s such a huge area and exercise and diet go hand-in-hand.  What is some of the advice that you would have on that front? Julie:                Exercise isn’t my speciality, but they do go hand-in-hand.  What I know is that people can eat all the right nutrients but if they’re not utilizing their body the way it needs to be used, your body won’t need all of those nutrients.  Especially when it comes to protein, people will say, well, should I take a protein drink, or should I use protein powder?  Well, at least in the U.S., most people eat more protein than they need anyway.  The reason you want protein is to rebuild your cells, to rebuild muscle, but a lot of people aren’t exercising and so exercise is what builds muscle. It’s a perfect complement but your nutrition plan is only going to go so far.  Especially after treatment, a lot of their body composition has changed as a result of treatment or the fact that they were less active during treatment.  To get their body composition back to a healthy balance where we have plenty of muscle tissue and lean body mass, it really is going to require – nutrition is never going to build muscle.  Nutrition can help to build the cells when you’re exercising. I focus a lot on helping people recognize their need for exercise.  I know exactly what types or how to do it, but especially weight bearing exercise can help build muscle.  It helps build bones, which can be a big side-effect for a lot certain types of chemotherapy are risk for bone loss.  It also just helps you feel better.  Fatigue is much better management when people are physically active.  All of those things, I think exercise is fun and also very much beneficial. Joe:                 Fantastic.  You spoke about plant-based eating, can you talk about why that’s important and why would you go incorporate this into your daily life?  What is the best way to do it in a practical way?  Many people, myself included, may not be used to that. Julie:                With the plant-based eating, I think that the most important thing is to think about every time you sit down to eat, that you have the opportunity to give your body some nutrients it needs to function.  For the most part, we need a lot of phytochemicals.  Phyto means plant.  These are just plant nutrients that our bodies need to function.  You need a lot of them every day.  When you sit down to eat, half of our plate should be covered in fruits and/or vegetables.  A quarter of our plate would be covered in some kind of whole grain, which is also a plant food, so that counts as part of your plant intake. Then you have a quarter of your plate that would be protein.  That’s where you get to choose.  Do you want to have meat or dairy products on your plate for protein?  Or do you want to have more plants, which is what vegetarians and vegans do.  They get their protein from beans and nuts and seeds.  What I encourage people to do is have one cup of fruit at breakfast because most people don’t want vegetables at breakfast.  A cup of fruit at breakfast.  A cup of vegetables at lunch.  A cup of vegetables at dinner and then most people enjoy fruits and they snack on them throughout the day. That will help add up your total and if you’re getting to four to five cups a day combined with fruits and vegetables, that’s what we’re aiming for.  The other key indicator of a plant-based diet is, are you having plant proteins every day?  Even if you’re a meat-eater, you should still be having beans, nuts and seeds at least one serving a day.  Then the other things will fall into place.  If you have fried foods occasionally or if you have desserts occasionally, that’s not a big deal as long as you’re still meeting the core of getting all of those plant nutrients, so that you can make sure that all of your cells have the tools that they need. Joe:                 That’s great, Julie.  What about the times when you’re in treatment and eating is physically difficult, what can you do? Julie:                When eating is hard, then we sometimes say, okay, maybe we should just find whatever we can.  Especially during treatment, if someone really cannot tolerate any of these healthy foods or plant foods, having something to eat and getting enough calories and protein is more important than anything else.  We need them to get those calories and protein in, if it’s a milkshake and that’s all that they can get in, if it’s one of those canned nutrition beverages, if that’s all they can get down, that is better than nothing.  The last thing we want is for somebody to not get enough food. If you’re not getting enough calories and you’re not getting enough protein and you have a diagnosis of cancer and you’re going under treatment, we have plenty of studies showing that that will lead to malnutrition and that malnutrition leads to poor outcomes.  We want to do whatever we can to make sure that people get enough food in.  If they can’t tolerate fruits and vegetables and all of the healthy things that we’re talking about, then it’s time to think about, well, can we add calories with healthy foods like nuts and avocados and olive oil and heathy fats?  If we can do that, great, if they can’t even tolerate that and all it is ice cream, then it’s just going to be ice cream for a little bit of time until they get through it. Joe:                 Absolutely.  Speaking of drinks, what’s your take on alcohol.  I know I’ve heard a lot about drinking in moderation and what is that and how can you apply it in practical terms? Julie:                Yes, so we know that alcohol increases risk for cancer, several different types of cancer.  It increases risk.  Again, it comes down to how often and how much are you having at a time.  That’s where moderation comes in.  I find a lot of people don’t know what moderation really is.  They can’t actually define it. Joe:                 Or can’t stop themselves. Julie:                Yes, or they start, and they can’t seem to stop at moderation.  The definition of moderation when it comes to alcohol is one drink a day for women, two drinks a day for men.  You don’t get to save those up for the weekend.  It’s once your day is over, that’s your drink or not.  I tend to think I would not have a drink every single day.  To me, that is a habit and that’s not a habit that I want to make every day.  A drink is considered 12 oz of been, 5 oz of wine, which is like not that much.  Or an oz and a half of liquor.  Really, finding that balance is important. Joe:                 Yes, that makes so much sense.  If we go back to food, I know you have so many great recipes on your website.  What was your favourite one when you don’t have much time? Julie:                Yes, so I – gosh, I have a lot of favourite recipes.  There are a couple of ones that I use all the time.  I have a smoothie recipe.  It’s a green smoothie with bananas and peanut butter and spinach and it’s delicious.  I use a cup of milk and two tablespoons of peanut butter and two teaspoons or dark coco powder, a cup of spinach, and a frozen banana is really important.  That blended up is delicious.  That would be a breakfast meal. Or if it’s a snack, I’d probably have half of it.  I also love making granola.  I have a granola recipe on my website I do a lot of crockpot recipes because that tends to be easy.  I do chilli, bean chilli, I don’t put meat in my chilli.  Bean chilies in a crockpot is something that I really like to do a lot.  I like to do curry recipes.  A lot of people ask about turmeric. All types of herbs and spices are good for us.  Curry is a great way to include that in your foods.  You don’t have to be fancy to eat healthy.  Sometimes I just go to the grocery store and I grab a piece of fruit, I grab some carrots, I grab hummus and crackers.  Maybe a little thing of yogurt.  That’s a lunch.  It doesn’t have to be fancy. Joe:                 That’s fantastic, Julie, because I think that’s actually misconception that it does have to be something really fancy and elaborate.  I think that puts a lot of people off, doesn’t it? Julie:                Yes, it puts me off.  It makes me feel like, never mind.  Forget it, I’ll just go to a drive-through and get whatever I feel like getting.  When you try to lower the bar and make it simple.  At least here, I live in the southern part of the U.S., and when I moved here, people would eat peanut butter and banana on a sandwich.  It was like peanut butter and jelly, only you put banana instead of jelly.  It’s really good.  Also, it’s cheap and it’s easy.  Most people like it.  Finding those really simple things I think is the key to making healthy eating fun and also simple. Joe:                 Yes, I think that’s an especially important point if someone’s dealing with treatment or after treatment, because you’ve got fatigue, you’ve got all of those things.  You’re really not in the mood to spend hours in the kitchen, right? Julie:                Unless someone really likes to cook.  That’s their hobby and that’s what gives them purpose and meaning, and they like it.  Life is too short to stress out and spend half of your day in the kitchen chopping things.  We’ve got to figure out how to nourish ourselves but also allow ourselves time to do other things. Joe:                 Yes, exactly.  There’s another stigma that comes with healthy eating, is that people think that it’s all about denying yourself food that you love?  Is that true? Julie:                Well, it’s definitely a stigma.  I think people have a hard time figuring out that, hey, a special treat is okay sometimes.  You should have a special treat sometimes.  It shouldn’t be like, oh, I do a really good job, but I never ever treat myself.  That’s not fair.  We should be able to find that balance, but I also know people who tend to fuel or feed their emotions with food.  That’s not healthy either.  They might be eating junk food too often, like every single day, or it becomes this habit where they cope emotionally with challenges by eating certain things.  It’s hard to figure out what that balance is, but certainly we should be able to enjoy desserts and special treats on occasion. Joe:                 Yes, exactly, it also comes together with having great intentions in mind.  Sometimes you want to do the right thing, but I guess we have trouble sticking with it.  That’s why most New Years’ resolutions go out the door a few months later.  Do you have some thoughts around how you can stay on track with and build on healthy habits? Julie:                Yes, for a lot of people, we’re not really aware of what our habits are.  The first thing, if somebody wants to come in and see me and get some nutrition advice, I say they have to show me the money.  That’s not dollar bills, the money that I ask for is they keep a food record for a whole week.  Where I don’t want them to just write down kind of what they ate.  I need them to specifically write down what exactly they ate and how much of it and what did they drink and how much of it did they drink?  We don’t have to memorize everything that we eat.  If we’re looking at wanting to make some healthy changes, we need to do an audit.  By writing down what we eat for a week, it shows us, I don’t want people to make changes before they write it down. I want them to write down what they’re actually doing, so that we can pick out what are the habits that maybe aren’t so good?  What are some things that we could make substitutions for or change up a little bit?  Or, maybe they have a habit, they’re eating treats too often and we just need to cut it back to a more reasonable amount.  Really, that’s the first thing I would do, is keep a record for a week, to figure out what they’re actually doing.  Then, to count up the number of fruits and vegetables they eat every day, that’s another simple place to figure out, maybe they actually need to eat more fruits and vegetables to improve their nutrition.  Those are the first things I start with, as I count up the fruits and vegetables when somebody brings me a week-long food log. Joe:                 Absolutely, Julie.  It makes so much sense because we’re really not honest with ourselves.  If you were to ask me on the spot, I would probably immediately, like what I had last week for example, I would immediately discount all the snacks that I had and would easily half the amount of alcohol that I had.  Yes, you really do have to have a log and keep yourself honest. Julie:                Yes, definitely. Joe:                 Is there something that people often miss when they try to have a healthy diet, but they aren’t really getting the results that they want? Julie:                Let’s see.  I think sometimes people skip meals or they don’t get a full meal, if that makes sense.  They would eat something at lunch, but it might not be the right combination of foods.  We want to make sure that at meal times we have fruits and/or vegetables.  We have wholegrains and we have protein.  A lot of times at breakfast, people hardly have any protein at all.  Then maybe at lunch they might have a salad, but they don’t have any carbohydrates.  They’re not balanced throughout the day.  We need them to eat consistent amounts throughout the day. The other thing that happens is, they often ignore their hunger and fullness ques which is a big problem.  If their body is actually hungry, we want them to eat.  We also want them to stop eating when they’re full.  A lot of people eat so fast that they get through their food before their body can even tell their brain that they’re full.  Slowing down meal times, tasting their food, making sure they have a variety of nutrients on their plate.  Then really paying attention to if they’re hungry, then they should probably have a snack.  Then do not skip meals.  That’s a red flag. Joe:                 Yes.  What are some of the books or other resources that you’d recommend for a person who’s dealing with cancer or maybe they want to build a healthy life after cancer? Julie:                Yes, there are a few.  I think there’s a lot of really not quality books on nutrition.  I’m always cautious about that.  There are some cook books that I think are really good.  One of my favourite cook books, it’s not specifically cancer-relate but it is called: Lickidy Split Meals.  It’s a dietitian here in the U.S.  that wrote it.  Very practical.  Lots of quick and easy healthy meals.  I think people need more of that.  There are some eating well through cancer cook books that I think are pretty good by Rebecca Cats.  It talks some about side-effects but also healthy eating.  Here at the non-profit that I work for, I host a mindful eating program.  We contract a dietitian to come teach that.  The books, her favourite ones to help people get more in touch with their hunger and fullness ques and to try to avoid emotional eating is called: Intuitive eating.  It even has a workbook with it now, which is really handy.  Those are things that I really think are great tools to help guide people. Joe:                 Yes, I love those PDFs that are very simple and clear on your website.  I’ve got one on my fridge right now that really helps guide you through making these decisions on what to eat better.  If somebody wanted to check out your products online or work with you individually, what would they do? Julie:                Yes, the website: cancerdietitian.com has lots of recipes.  I have all kinds of different things on there.  I do have some printable handouts on a variety of different topics.  Those are available.  Some of them are free some are for purchase.  They support the non-profit I work for.  I think that’s a nice thing.  People can email me.  I usually respond pretty well.  I don’t do online consultations, but I do know some dietitians who do that, some oncology dietitians.  On social media, I’m happy if somebody sees something on Facebook and they’re wondering, is that true or not?  I get a lot of followers who will send that to me or ask my opinion.  Those are easy things to do and to engage with some of my programs. Joe:                 Yes, that’s fantastic advice, Julie.  I think that nutrition during cancer is an area that really doesn’t get enough attention. Julie:                It’s true.  The interesting thing is, there’s just not a lot of us oncology dietitians compared to the number of people who are being treated.  At least in the U.S.  insurance coverage doesn’t pay for it.  A lot of cancer centres might have one or two dietitians if you’re lucky for a lot of patients.  Sometimes it falls on the healthcare providers that aren’t dietitians and they don’t always know how to respond.  I always encourage, when somebody emails me, I encourage them to at least ask their cancer centre for a referral to a dietitian.  The more they hear that, the more likely they are to start staffing someone on-site to help with that. Joe:                 Yes, absolutely, because I only found out about oncology dietitian pretty much after the fact.  I wish I found that earlier because I put on a whole lot of weight during treatment because I was on steroids.  It made me eat a lot of food and not necessarily the best food.  I think a lot of folks need advice around that.  I think it would be great to have a lot more awareness around it. Julie:                Yes, for sure. Joe:                 Thanks so much for your time, Julie.  I really appreciate it. Julie:                Yes, thanks for asking me to come on.  

If there one thing that I regret throughout my cancer adventure, it’s not being properly prepared.  There’s a lot going on and it’s easy to forget about your symptoms. You forget to tell your specialist what’s bothering, so to help you with that, in this episode you’re going to find out about Cancer Aid, a mobile application that helps you track your symptoms and so much more. I’m talking to Raghav Ganesh-Murali, COO of CancerAid and in this episode, we cover: The importance of logging and sharing your symptoms Being empowered and making better decisions Having the support of your champions through treatment Trends and symptom changes that integrate into patient’s medical record Online platform to share and connect via stories Links CancerAid CancerAid Wins $500,000 on Shark Tank (YouTube) Simplify Cancer First Visit Oncologist Checklist Full Transcript Joe:                 Raghav, how did Cancer Aid come about?  What problem were you guys trying to solve? Raghav:          Yes, so CancerAid is basically a solution to a problem that we save whilst working in clinical practice.  My background is as a radiation oncology specialist.  I trained here in Sydney.  Basically, when we saw patients, we often were able to see the same problems time and time again for each of these patients.  We did a survey of a few patients at the hospital we work at.  We work in Chris O’Brien Lifehouse.  We saw four main problems.  To start with cancer patients and some of their diagnosis, they were looking for the right information.  During treatment, they wanted tools to help them manage their illness. They wanted to be able to connect with other people, their family, their friends and share with them their experiences, so they didn’t have to repeat themselves.  Lastly, they wanted to connect with other patients that have gone through similar experiences and reduce the isolation that was perceived.  We took those problems onboard and came up with a solution to try and address some of those problems.  It took about a year to design it and Cancer Aid was released in August 2016.  To answer the four problems, we provide patients with the right information, peer-reviewed, medically reliable information. The second part, we give patients a personal journal and a symptom journal, so they can record their experiences and log their symptoms.  The logging of the symptoms was especially important because patients were better engaged for health with better outcomes.  Very recently, there has been some strong randomized evidence that has suggested that patients who logged symptoms share that with their clinicians, actually can potentially live longer, which is very exciting. The third solution, which was connecting family and friends, we’ve got a component inside the app called the Champion’s Feature, so a patient who we call the hero going through their treatment can nominate a friend or family, a caregiver through the app and they get a deep link.  They click on the deep link and they’re able to access the hero, which is a patient’s profile and can read what the journals they are logging are. That helps with motivating a patient who’s going through a tough time, so they can log their journal and then they can share with the people that they choose to read with them.  Lastly, the community, we’ve got a static community, not a dynamic community, which means patients can read about stories from other patients that have gone through similar experiences.  Eventually, this will become a more dynamic community, where they can track other patients, but right now, it’s simply reading stories.  There are a couple of reasons we haven’t done that yet, but it’s in our pipeline, we’ll get to it over 2018. Joe:                 That’s fantastic that it works on so many levels.  It benefits the patients, it benefits the doctors, it also benefits the community people who want to help out.  You guys have had quite a journal from being an oncologist here in Sydney in Australia, and you got the investment from Shark Tank, where you had to justify the value of your application and the value that it delivers.  Can you talk about that experience and what you got out of it? Raghav:          Yes, good questions, Joe.  Shark Tank was a really interesting experience.  For us, neither of us had really been on television before and it was an opportunity to basically share our message with the rest of Australia.  That was a great opportunity to do that.  Certainly, CancerAid is an innovation and for any innovation to succeed, it required funding.  Funding comes in two forms, whether it comes from a sustainable business model or grant funding.  CancerAid is a business model or had a sustainable business model where the app is free to patients, it will always remain free to patients. We license the technology to hospitals because we improve their costs.  Therefore, there’s a dollar cost there that will serve as a return on the investment from the hospital.  That was the idea.  We took it to Shark Tank and we said, we’re creating a socially responsible business, this app is free to patients and this is how we commercialise it by providing value to hospital, insurers, and pharmaceuticals.  At present, we only have a commercial business model that’s sitting with hospitals and insurers.  That was well received on Shark Tank.  It was actually quite nerve-racking, we were in the tank for about 15 minutes, so there were a lot of questions to and fro. It was actually a really nice experience, we got asked about the journey for how we developed it and what we were doing when we started the process and how we came up with the idea.  All the bits and pieces and the evolution.  We were actually lucky enough to get five offers from five of the sharks.  We ended up going with Andrew Banks, who’s been a really good asset to our business, going forward. Joe:                 Yes, I’ve seen that on YouTube.  It was pretty confronting, wasn’t it? Raghav:          Yes, it’s pretty confronting, you get quizzed, but then you forget where you are, and it becomes a conversation.  The it becomes a conversation about something that you’re deeply passionate about, which is CancerAid for both myself and Nick and Martin who was on the show, as well. Joe:                 Yes, absolutely.  Cancer covers a lot of ground, as you talked about, so can you talk about how the patient benefit from it can the most.  If you’re a person who just downloaded the app, what is the best way for you to use it. Raghav:          Thanks for asking that questions, Joe.  At the end of the day, Cancer Aid has to create some sort of clinical value.  The strongest aspect of the app, which there are many aspects of the app that are helpful.  The app that patients find very useful are the stories about other patients.  One of the key messages that I really wish to share with patients who I look after, or who might listen to this podcast is, those patients who are more interested in their health and take more engagement in their own disease and their illness and their symptoms have better outcomes. Last year, at the largest cancer conference in the world, there’s a randomized study that was presented, in terms of medical literature.  What is showed was a very simple thing.  Those patients that logged their symptoms regularly, like their pain, their nausea, their vomiting, and then shared that with their clinicians, had better outcomes.  Not only were they more satisfied, so it improved satisfaction, they reduced the risk of admission.  They had ten percent less risk of admission.  Really importantly, they actually lived longer, so that in that randomised study, they had a survival advantage over the patients who didn’t log their symptoms.  That’s a really strong metric and something I really wish I can convey to our patients, to try and take more engagement in your disease, certainly within the limits of how you can. Then if we can share that with our clinicians who are looking after you, the doctors and nurses, it’ll help them make decisions about the care together.  That’s one of the really strong messages I wish to send out. Joe:                 That’s a great benefit.  I know from personal experience that if I had a dollar every time I walked out of my oncologist office and gone, like, I should have asked him that.  It’s so important because you just forget, don’t you? Raghav:          100 percent.  Patients, in your recent memory of what you’re thinking you have to juggle and you go to the oncologist and you speak about those little problems, but if you have been tracking your symptoms over the last few weeks, and then when you go there, you say, “Hey, this is what I’ve been tracking over the last few weeks.” There’s a graph to say, “Hey, my pain is getting a bit worse, my pain is getting a bit better.” It’s really powerful in terms of how we can direct the discussions, both in the patient’s point of view because they feel like they’re empowered in their own care, and for the clinician because they have more points of data, objective data to make decisions.  That shared decision-making becomes really good and that improves the communication.  That’s one of the key aspects of what we’re trying to do.  Cancer Aid is launching an integration into the medical records, so it makes this process simple. Patients download the app, log their symptoms, and then they go to their clinic appointment, it’s already embedded within their electronic medical records.  The doctors or the nurses pick up the patient’s screen, open up the medical record, and they can see all the patient logs, which is pretty powerful. Joe:                 That is very powerful.  What happens when patient is dealing with a number of conditions?  Maybe they have other chronic diseases and they’re also managing those symptoms, how does Cancer Aid help with that?  Does that mean that the oncologist will have to redirect their queries?  How does it work? Raghav:          Good question.  The symptoms they’re going to log are 16 symptoms that are not unique to cancer but cover most cancer symptoms.  There’s also a space where you can add other symptoms and free text whichever symptom you wish to log.  Now, certainly, in my experience, most oncologists will be comfortable dealing with the symptoms that generally are due to the cancer or the treatments related to that cancer.  Yes, you’re right, lots of patients have other chronic illnesses. Care isn’t given in silos, care is given in a multi-disciplinary setting, where you have your family physician, your emergency physicians, your other specialists, allied health, nurses.  I think having the ability to log your symptoms in one place.  The patient has that record and they will just share that with the other people looking after that particular patient.  It’s pretty useful.  It’s hard to say that there are one or two specific examples of how an oncologist would manage non-cancer symptoms, but certainly within reason, most oncologists would try. At the same time, it’s important to have some expertise if it’s a specific symptom related to a specific condition.  Potentially, it might be better treated by the specialist or the general practitioner who’s looking after that condition.  There is that concept, as well. Joe:                 Yes, that’s great.  Have you had any feedback from oncologists, from medical specialists with patients share their symptoms through Cancer Aid? Raghav:          Yes, we spend a lot of time.  We’ve had over 300 clinicians, both doctors, nurses, allied health, give us feedback on the designs of our new clinician link, which allows patients to connect with the electronic medical record.  It’s been a really overwhelmingly positive response. I think doctors welcome better communication with their patients and things like that are easy and within their workflow.  Often, it’s time is a big pressure for the clinicians in the hospitals.  Anything that reduces their time taking to get the information, if they can get good information, good quality information and see that about their patients, there’s certainly a lot of use in that. Joe:                 That’s really important.  I know that tele-medicine is a big part of Cancer Aid, as well.  What is it and how can it help? Raghav:          Tele-medicine traditionally is a video consultation.  The current Cancer Aid app doesn’t have a video consultation with patients.  There are a lot of other technologies that have done that, and we don’t necessarily believe in redefining the wheel.  The way we do our tele-medicine is a slightly different tele-medicine.  It’s what we call the Champion’s feature, where patients can nominate friends or family.  The friends or family have the access to the patient’s profile in real-time.  It’s a bit like a Dropbox but patients can use it as a journal, so they can log their symptoms in their personal journal.  Then their friends and family can access it.  It’s a slightly different form of tele-medicine. Joe:                 Okay, got you.  It’s good to know that I got it completely wrong.  I know that cancer is a really tough time when you go into treatment or you’re waiting for results, so having your true supporters on side is hugely important.  Can you talk a little bit more about how Cancer Aid helps with that? Raghav:          It is a very isolating time.  It’s a time when patients who have a support mechanism, whether that’s a clinician or whether it’s the hospital provided support system, or it’s friends or family.  Those patients who have that support mechanism because you need to rely on someone else, is pretty important, pretty helpful/powerful.  With the Champion’s component, when we survey patients, a lot of what they didn’t want to do was go around to each one of their supporters and say, “I had pain, I had nausea, I had vomiting” and repeat themselves a multiple amount of times. They said, can you guys help us voice it, so we just invite people to view what we’re logging, then supporters of mine can come access it and see what I’m logging, and they can provide support.  I’ve got pain or nausea, they can say, “I can help you with my appointment, or I can drive you to the clinic, or I can cook diner for you.” Having the ability for a patient to log their feelings, their emotions, as well as their symptoms, and then sharing that with the people they choose the share it with.  It’s not that we choose them, we don’t get access to it.  They have to invite that person to view those logs.  That’s how we’ve created that supportive link. Joe:                 Yes, that’s fantastic.  What feedback do you see from people, people who are using it?  Do they see that friends and family are responding and helping them through it?  Is that important to them? Raghav:          100 percent.  We have thousands and thousands of reviews from our patients with comments.  Most of them are very positive, the striking majority.  There are some which are not so much negative, but they give us some feedback as to how we can improve the app.  Actually, those are as valuable as a positive feedback.  The positive feedback is great for us to know we’re doing the right thing and creating the right technology.  At the same time, the feedback people give us as to how we can constructively improve the app is very valuable to us and we really welcome that.  We do a lot of feedback mediation sessions.  Always welcome to those comments. Joe:                 It’s fantastic that you get feedback and you proactively working it into the app.  I think that’s really great.  Another question I want to ask you is, with Cancer Aid, really you are at this really interesting intersection between patients and caregivers, medical specialists and researchers.  What unique challenges do you see for all of these groups of folks coming together? Raghav:          Yes, so everyone’s challenges are slightly different.  Hospital providers have a different challenge to insurers, and even within hospitals, each of the different providers your name, the doctors, the nurses, the researches all have slightly different challenges.  Trying to find a solution that fits all of them is not always easy.  Personalising it does happen for us, so we try and create personalisation through it.  It really depends on what the clinical problem we’re trying to solve is.  How is this really going to affect the patient, how’s this going to improve the journey for the patient? At the same time, what is the commercial use case for doing this?  A lot of the time, we need to build a new technology, we have to answer those two questions.  Are we really improve the care journey for this patient?  Secondly, is this a sustainable model if we’re just doing one build for one person?  It doesn’t always make sense. Joe:                 Of course, what are some of the biggest challenges for cancer survivors?  Does CancerAid help with that side at all? Raghav:          Thankfully, I have not been a cancer survivor, so it’s hard for me to know exactly what the biggest challenges are.  From what I hear and from what I see in clinic, patients are often very fearful of recurrence and even after a diagnosis of cancer and finishing treatment, it’s something that is really in their mind.  Some patients are looking for clinical trials, some other patients are looking for other patients who have had similar experiences to share their experiences.  We provide that, so in our CancerAid community, we’ve got a survivorship page where we talk about nutrition, exercise, how patients can utilize the tools within CancerAid to aid in their recovery. One of the examples I’ll give you is that in the next few weeks, actually, we’re really excited to launch this, is integrating the step count.  Every Apple device counts how many steps you walk.  Integrating that into the symptom tracker.  When a patient is walking X number of steps, they actually can map that against their symptoms.  If they’ve got fatigue and you see the number of steps they’ve walked are lower, that really helps them because what they’ll then know is to understand that my step count is related to my symptoms, and can potentially can improve their step count, increase their activity, and reduce some of those symptoms.  Those are some of the tools that we use for survivors within the app that can give them some benefit. Joe:                 Yes, from experience, I know that this feature would also be helpful for patients.  I know that when I was going throughout chemotherapy, that my oncologist advised me that the best way to deal with fatigue is through exercise.  It actually really helped me a lot to build up that habit.  That would be helpful for patients, as well, hopefully. Raghav:          I agree, yes, 100 percent.  Also, about smaller things, about normalisation, as well.  We write articles, potentially about patients returning to work.  Not everyone returns to work, some do, some don’t.  There’s a difference and it’s not our job to tell people to do or not to, but what we can do is amplify the message with some patients who have chosen to return to work and have us help them, or some patients who have chosen to stay away from work and how they’re coping with that and amplify that story, and be a platform for other patients to resonate to those stories.  To say, “Actually, that normalises my experiences” and then they can potentially see that as beneficial to reducing anxiety or if they had any anxiety related to it. Joe:                 Yes, exactly.  One way or another, it’s the new normal.  You’re going back to a very different life to the one you had, that’s not always a bad thing.  I think in many cases, you find other benefits, you find a new appreciation for life.  I think it’s very important to see, inside Cancer Aid, it’s very important to see stories of people who have made it through to the other side and that they can share their experiences, right? Raghav:          I completely agree with you.  It allows patients to read those stories, unless you don’t get access to those stories, quite often.  A lot of patients want to share their stories, so we provide the channel to do that.  We get a lot of inbound requests from patients who want to write for us, which is really nice, and we love that, and we amplify those stories within our platform. Joe:                 In your opinion, what is the best thing about CancerAid? Raghav:          As a technology or as a whole?  What do you mean? Joe:                 I think about the technology and how it enables outcomes for people? Raghav:          Yes, you hit the nail on the head there.  Creating technology that’s scalable instead of just being the doctor in the clinic where I see maybe five or ten or fifteen patients, Cancer Aid is a way to scale better outcomes across the globe.  It’s a digital piece of technology, very important that symptom tracking.  One of the key messages for us is to get patients to track their symptoms, log their symptoms, understand the rate of change of those symptoms.  Then be able to have better communication with their clinicians and realise those improved outcomes. One of the things I keep saying to our team is, we are building technology that we are privileged to build, and that patients will be using.  By using this, we potentially could actually improve their lives and their length of survival.  It’s a really powerful position to be in.  It’s a really strong rationale as to why we do what we do.  We constantly remind ourselves that we’re doing this for those reasons.  Yes, we continue to try and create clinical value.  At the same time, underlining that by a sustainable business model. Joe:                 Yes, that’s great.  With all the exciting technology coming our way, like artificial intelligence, what does the future hold for us in your opinion when it comes to digital health? Raghav:          A lot of digital health requires engagement from people.  If I simply gave, for example, you or another patient technology, the technology needs to be engaging.  There are a lot of fancy words, AI, VR, AR, and so many acronyms.  I think they’re all great because they’re all an advance in technology and we embrace advances in technology, even AI, we’ve got plans for how we can utilize AI within Cancer Aid.  The key message has to be about how does this improve the engagement of the person using the technology.  How do we get them to do the activity that’s going to provide the best benefit? If you’re able to answer that question, the answer to that question is more sophisticated technology?  Then great.  If the answer is just having an acronym or one of these novel technologies inside the app just for the sake of it, I don’t think that’s quite the right answer.  It has to serve a purpose.  For us, that purpose is to really improve patient engagement of our technology. Joe:                 That makes a lot of sense.  When you talk about engagement, you mean engagement with the oncologist? Raghav:          I mean utilization of the app.  For example, symptom logging or personal journal logging requires input from the patient, it’s sometimes an onerous task.  Let’s say you have other things on your mind, you have treatment, or you’re not feeling well, the last thing you’re going to do is to feel like you have to log your symptoms.  There has to be feedback for the patient by logging, there’s going to be a material benefit to your care and creating those feedback loops and creating that value is challenging.  That’s our job. Joe:                 How does CancerAid work with those feedback loops at the moment?  How does it encourage someone to go in and put in their feedback? Raghav:          Yes, so if someone logs their symptoms with our clinician link, which is the electronic medical record integration.  The patient is at home, they log their symptoms, when they go to the clinic, the doctor and nurse have already got on their screen the symptoms that you have logged.  We have connected the patient to the doctor digitally, so that the patient can continue to log their symptoms.  When they go to clinic, they get to see a graph of those symptoms and how they’ve changed over time and therefore, improve their decision-making. What the feedback loop is that they log their symptoms, they get advice and management of their illness changes, so they’re more motivated to do it next time.  They’re like, “Okay, because I logged my pain, they were able to make a decision on what pain tablets to give me.  Let me do it again.” That continues and gives them benefit and gives the clinicians a benefit, too. Joe:                 Okay, that’s fantastic.  I hope that as many people as possible get to use this app and log their symptoms and hopefully get better outcomes. Raghav:          Yes, no, I agree.  Thank you. Joe:                 Thanks for your time. Raghav:          Thanks, Joe.    

In this episode, I’m talking to Bogda, medical oncologist who shares some great insights if you’re facing cancer right now, or if you’re building a life after cancer.  Bogda breaks down what to expect when you’re talking to your oncologist, advice on dealing with stress, why oncologists are here to guide through the tough times as well as closing the loop with your general practitioner, as well as other specialists you might be dealing with. In this episode, we cover: Dealing with cancer diagnosis How to prepare for your oncologist visit Why oncologists love informed patients Multi-disciplinary care and how it can help you Why oncologist is your guide and advisor through cancer Resources that support you on your terms When getting professional help to deal with cancer stress Bogda’s survivorship formula Links Finding My Way Bogda’s Academic Profile Simplify Cancer First Visit Oncologist Checklist Full Transcript Joe:                 Bogda, thanks very much for taking the time to do this, I really appreciate it. Bogda:            Sure. Joe:                 Bogda, as a medical oncologist, you often have to give people the bad news.  How do you do that?  How do you tell someone that they’ve got cancer? Bogda:            Sure.  The first thing to say, Joe, is actually medical oncologists don’t do that very often because we don’t diagnose cancer.  Very often surgeons do.  We tend to be the second person who raises the question of cancer, or we might be the person who might see the patient after someone might have said, “This is very likely cancer and you will to see somebody to see the final diagnosis.” Many of our patients are prepared for the bad news when they see us.  It’s not like we deal with issues in a completely unexpected scenario. What we do quite a lot of is we might be the people who talk to the patients that the status of the cancer has changed.  We might be seeing who we’re treating with the hope that we might cure the cancer and then it becomes apparent that the cancer is no longer curable and growing.  We may need to tell that news and that’s often a very distressing scenario for all involved.  How do you do that?  The first thing to say is that you have to be honest about what you’re trying to tell, and you have to be accurate about your information.  There’s no point talking about something where you really haven’t done your homework.  You need to get your facts right. You have to have all of your information available.  There’s no point starting the conversation and then saying, “Actually, I’m still waiting for one extra test” because that is really distressing and confusing.  What I tend to do is I tend to try to prepare patients that a difficult conversation is coming.  I will say, “Look, we need to talk about such and such, is it okay if we talk about it now?” That gives a person the option to say, “I really don’t want to talk about it now, or I want somebody else to be with me when we’re talking, or I’m finding it really surprising.” To give themselves some room to deal with things, preparing and warning that something is coming is important. Secondly, when I talk about what’s happening, I try to keep the language quite simple.  Sometimes in oncology we tend to use very misleading terms, like growth, condition, diseases changing, and you don’t know what that really means.  I think that if you’re really going to say something, try to keep it as accurate and as simple and as brief as you can.  I think cancer is growing is pretty unambiguous, but things are not looking so good could mean anything.  I think you need to be quite precise.  I tend to move onto what can be done quite quickly.  People are interested in not just what happens, but what can be done about it.  That allows them to focus on something positive. Usually, there is a lot that can be done.  I try to tell what their situation is, identify what can be done and I finish off by trying to draw on strengths of the person I’m dealing with.  Dealing with cancer is not the first stress that people experience.  They will have had lots of stressors and disappointments in their lifetime and they’ve gone through them and managed things.  It’s useful to say, “When you were in a very difficult situation before, how did you cope?  Did you rely on friends or family? Did you take some time to plan how you’re going to approach it?  Did you get professional help?  What helped you then, because we’re going to use those resources this time because we know they worked for you before and they should help again.” I think there are a number of steps to use, the key issue is honesty, simplicity, and focus on what can be done as opposed to what can’t be done. Joe:                 That makes so much sense, Bogda.  I’m so glad that you brought up the idea of not using the medical jargon.  I spent a lot of years working in IT and I know that I had to adjust my language when I’m talking to someone who isn’t a specialist in IT, in order for them to really speak the same language.  That’s really important.  Is there a way that you would recommend for people to prepare?  I know from experience that when you go to see your oncologist or another specialist, like you show up, you have no experience what to expect, you’re a wreck, you forget the stuff you wanted to ask, and the other half you forget the minute you walk out the door.  Is there anything people can do to prepare themselves? Bogda:            One of the very simple strategies is to bring somebody with you.  They know you and they recognize when you’re looking a little bit distressed and you may not necessarily have the courage to start the conversation yourself, but somebody sitting next to you will say, “Hang on a second, we really didn’t understand that bit.  Can we go back and talk about such and such?” Having a person to help you is often a useful idea.  A friend, a family member, somebody that you can bring with you is a useful strategy. The second thing is to think about what it is that matters to you, what sort of questions would you want to ask.  It’s often useful to have a list.  Many of my patients would have a conversation with me and would say, “Hang on a second, let me look at my list.” They will have a quick look and say, “Okay, we’ve covered everything, but we haven’t covered this, can we go back to that?” When you’re stressed, and your mind tends to wander, and you don’t know whether you’re going to cover everything, think about your list and check against it.  The other thing is don’t be afraid to ask to meet again.  It’s not that the conversation happens only once and it’s very useful to go back and ask, “Could we meet and discuss this again? Or is there anything I could read about what you’re just describing?  If you’re describing a particular cancer treatment, can I have any written information about it?  If it’s any types of supports, are there any written resources that I could look at in the comfort of my own home?” There are many ways of meeting people’s needs and that doesn’t have to happen in one encounter. Joe:                 That’s such a fantastic point, Bogda, because sometimes people can feel so powerless that they don’t really have any control and what you’re saying really puts the ball in your court when it comes to dealing with cancer. Bogda:            I think it’s worth remembering that for an oncologist, it’s helpful to have an informed patient.  It’s in the interest of the oncologist to keep you informed and content that you have all of your needs addressed appropriately, because when people feel like they’re not really well-understood, their needs are not met, they often are more distressed, they often don’t know how to manage the treatment and their condition and they’re more likely to have problems.  Nobody needs problems.  I think it’s in everyone’s interest to make sure that everybody is happy. Joe:                 Yes, absolutely.  Bogda, do you believe that people with cancer get the support that they need mentally, emotionally, socially? Bogda:            Not always.  I think that it depends on how good the process of identifying what the needs are.  Sometimes oncologists don’t ask, sometimes patients don’t tell, and sometimes a bit of both.  Oncologists tends to not ask about problems that they feel ill-equipped to manage.  For example, if they’re not very comfortable talking about emotional problems, they’re not going to go there.  Whereas, oncologists who are comfortable about talking about emotions are more likely to say, “How are you doing?” One example is that I have had stories of doctors, not necessarily oncologists, that would say if they patient is crying in my office, that means that they need to see a health professional because that’s an emergency.  Whereas, there are many of us, including myself, who think, well, my office is a very safe place, so if crying is what you need to do, that’s okay.  It’s not going to tip me off or get me to change the subject.  I think that’s relevant because we know that if we train oncologists to be more skilled in asking the right questions, and listening to the answers, then more issues are uncovered, and those issues are more likely to be addressed. Sometimes patients often don’t talk, sometimes they talk about things because they’re embarrassed.  For example, a female patient might be uneasy about talking about sexual difficulties with a male doctor and vice versa.  Sometimes patients feel that their concerns are really not on oncologist’s brains.  They might have financial difficulties and they may say it’s not the doctor’s job to fix it, so I’m just not going to mention, I’ll just grin and bear it.  Sometimes they have an inaccurate expectation of what their experience should be like.  50 years ago, having cancer treatment meant that you vomited non-stop. If a person believes that vomiting is your lot in life, you wouldn’t raise it as an issue, you would just keep on vomiting because that’s what you expect as normal.  Again, this is where preparing patients for what is considered normal and what is not normal can help.  I think that there are lots of reasons why people’s needs may not be met, but we know that they are not always met and there is certainly room to move for all of us. Joe:                 Absolutely, Bogda.  Is there something in the curriculum, like if you studied to become an oncologist, for want of a better word, is there a subject that you would take as part of your course that would be like emotional side of dealing with patients? Bogda:            Well, there are a number of curriculum items that relate to it.  The first one is that medical oncologists in Australia are expected to undertake mandatory communication skills training.  That includes breaking bad news and identifying issues and so on.  Oncologists are supposed to develop some skills in communication.  The second issue is that oncology training is a training on the job.  Which means that if your colleagues and your senior colleagues, in particular, notice that your communication skills or your awareness of patients’ needs is poor, then that will be identified as a specific topic to address. There is a not necessarily new but growing field of psycho-oncology, which allows oncologists to really get interesting and psychosocial needs of patients.  There are some very good training opportunities, as well as research opportunities in this area.  There is no doubt that different doctors have different affinity for the topic, but there is a certain minimum standard that is expected, where oncologists are supposed to develop skills or counter communicate with patients effectively. Joe:                 That’s great to know, Bogda.  That’s fantastic.  What I want to ask you, as well, when it comes to people who are underprivileged and in terms of the support that they get, again, socially, emotionally, and mentally, as well, what’s your take on that? Bogda:            I think that’s actually a very important issue because we tend to often talk about cancer care in Australia as this wonderful, high-quality service available to everybody with excellent outcomes.  The truth is that people who come from disadvantaged populations, whether this is socioeconomic, or a geographic disadvantage, their cancer outcomes are inferior, and their needs are more likely not to be met.  That is, again, for a variety of reasons, it is harder to access support in rural areas or in disadvantaged areas. It is harder to ask because people often feel less entitled.  Sometimes they don’t have the language skills.  Sometimes they don’t have the awareness that they can ask for support.  Clinicians may not necessarily customize the enquiry to those needs.  For example, the majority of patients, it might take 20 minutes to talk about patient’s needs.  For somebody who comes with a language barrier or a particular cultural background, they may need twice that time.  The oncologists need to be aware that that needs to be provided. In certain cultures, there are particular cultural expectations of how you communicate issues, there are language issues.  There are, again, skills required.  Those skills can be provided and there are ways of bridging the gap through, in particular, through a cancer care coordinator, and patient’s advocates who support patients.  There are ways of addressing this problem.  I think that we actually do have quite a long way to go in addressing the needs of patients from disadvantaged communities. Joe:                 Well, hopefully, we can do more on that front.  Bogda, if you’re someone with cancer, and I know you’ve obviously seen a lot of folks who go through it, how would someone go out finding better support?  Both from people in their life and from other channels, here in Australia and around the world, are there any resources that are overlooked that people might not know about? Bogda:            Well, I think that there are a number of resources and I think it’s worth starting by thinking about the fact that there are lots of resources within cancer, but there are also resources outside of the cancer field and are both irrelevant, depending on what the need is.  Within cancer, one of the nice resources that hails from Australia is findingmyway.org.au website.  It’s a very broad website that looks at the support of people who are cancer survivors.  That was developed here in Adelaide.  It provides a lot of information on various aspects of lifestyle. The Cancer Councils in each state provide excellent resources that are cancer-specific, and those resources are available both online, telephone, and in-person.  Most of the cancer facilities around the country have good awareness of what’s available, both locally and remotely for patients to access that is within cancer.  I also wouldn’t want to discount the non-cancer resources.  They include going to your local library, talking to your local GP, joining in a meditation or relaxation class, learning about journaling, connecting with your peers, meeting your friends for a coffee or going for a walk. Those are also very important.  Many people who deal with their own cancer journey, often don’t want to spend their entire time talking about cancer.  It’s often very nice to switch off and talk about something else.  I think that in cancer, as health professionals, we often tend to think about the resources available just within the cancer space, but there is a wealth of resources outside of cancer that are just as relevant and just as helpful that could be used, as well. Joe:                 Absolutely.  I think that a lot of people might be overlooking that.  Probably they’re not using it to the best of their abilities, in terms of being able to open up and talk about these issues.  I’m sure that there are many cancers that are hard to talk about.  Do you notice any patterns, any similarities?  What would you say to someone who is afraid to bring up something personal, something that they feel awkward about?  Whether that’s with a medical specialist, like yourself, or maybe with someone in their life, like a family member or friend? Bogda:            I think that when we’re talking about patterns, it’s worth remembering that we tend to operate within the patterns we always have.  That means that some of those are very helpful and they work very well, but we also tend to repeat not necessarily helpful patterns.  Examples of it are people who say, “The way I cope with stress is by keeping busy, so there are certain things that I’m just not going to deal with because I’ll just get busier and never go there.” I think it’s worth finding a little bit of time for a bit of self-reflection on how I am travelling on the regular basis. If you’re travelling great and all is fine with the patterns that you’re using, good for you and keep at it.  If you find that things are not so great, then perhaps the way you’re going about them requires some refreshing, and this is where getting some professional help is often useful because you can count on confidential advice.  You don’t have to feel that you owe the professional anything for providing a service, that’s what they’re there for.  Whereas, with a family member, you cannot be confident that they will always hold the information confidential and you may rely on their generosity to give you time. Their skills may be variable.  I actually think that when in doubt, seek some professional help.  There are a range of health professionals that could assist.  Many people tend to underestimate the expertise of their GPs and of nurses, both within cancer services as well as general practice nurses.  These are people who are often very happy to help and very astute with regards to what can be done.  They just may not be necessarily aware that there was a need.  Some of us come across as extremely capable and having no worry in the world, when in fact, internally, we might be suffering.  I think it’s worth flagging that there is a need in a trusting health professional.  You might be surprised at how much help you’ll get. Joe:                 Yes, you’re so right about that because so often we forget that people just can’t read your mind, unless you specifically tell someone what’s going on in your head, people just won’t know. Bogda:            Exactly.  Yes, sometimes you may wish to talk about issues that are difficult, so you may not necessarily want to spell out what the issue is, but it is worth saying, “Look, I’ve got some concerns that are confidential, could I could to you?” One thing that sometimes people do when they come to my office, they would have this consultation where everything is going really well, and they would reach for the door and say, “By the way, could I just ask you one thing…” and that’s when the interesting stuff really comes up.  It’s useful to ask, because, yes, the crystal ball is usually broken.  We can also look at a person and say, “Do tell.” Joe:                 Absolutely.  Bogda, you mentioned earlier that it’s okay to make another appointment, to ask more questions, to clarify things, which I think is fantastic because that’s really important.  What if someone has questions in between appointments, or after a procedure or after a treatment?  Is that okay to ask an oncologist, like yourself, for an email address, for example? Bogda:            Different oncologists have different preferences.   I give my email address to all of my patients, it’s on my business card.  My email address is commonly available because all you need to do is look up my name at Flinders University and it pops out.  That is the case for most oncologists in academic settings.  It’s perfectly reasonable to give patients your email address.  As long as you’re one of those people who access their emails.  I think if you’re one of those people who never answers emails, then you probably shouldn’t offer giving emails to patients because you’re creating an unrealistic expectation. I quite like responding by email because that allows me a chance to respond outside of my work hours.  Sometimes it’s very hard for me to stop my work to pick up a phone call, but it’s okay to answer emails at the end of the day.  However, not every question should be answered by email.  I’m very happy to receive the emails, but very often, my response to the email would be: We need to meet and talk about it, because certain complex issues are not very easily explained by two sentences in an email.  It’s actually much easier to meet and talk about it face-to-face.  An email is a very good way of organising an appointment, but it shouldn’t be a substitute for an appointment. Joe:                 That’s a great point.  If you refer your patient to another specialist, like, say, a surgeon, how do you choose that person?  Is that a part of building up your network for a period of time or is there some sort of an online forum?  How does it work? Bogda:            Cancer care is intrinsically multi-disciplinary, so every single one of us works as part of the broader team.  Most of this team is built within the institution we function in.  A medical oncologist would work within a team of medical oncologists and connect with a team of surgeons and team of radiation oncologists and supported by a team of nurses etc.  Within those teams, you get to recognise how people operate.  You would recognise their strengths and sometimes limitation and the best fit for the patient.  For example, I may look at a particular surgeon from the perspective of: Are they very direct and therefore, really a good fit for the patient who likes a lot of very direct information? Or would they be too blunt for somebody who’s a little bit more anxious and maybe there is a different fit, a better fit for somebody else?  Of course, I get very particular about the skill of the people I work with.  I’m very lucky to work in a wonderful institution where I genuinely trust the skills of the people that I work with and I’ve been doing this for more than 20 years, so I’ve had plenty of track record to learn about it.  I think I often reflect about how sometimes it is challenging for me to verify expertise of let’s say general practitioners that I haven’t worked with, let’s say in a different part of the country, south Australia, and how important it is to verify that they have the interest and the know-how and the dedication to support my patients. You gather that from telephone conversations, correspondence that you exchange with them, so there are ways of telling whether the person that you’re working with is the person you would want to entrust your patient to. Joe:                 That makes so much sense.  How often do you get complicated cases, where you perhaps want to take it to a group of experts to get their input, and how does that process work? Bogda:            Complicated cases happen all the time because every person is complicated and very often, the cancers are complicated.  We routinely review management plan for most of our patients as part of the multi-disciplinary meeting.  That’s often a routine, perhaps not 100 percent, but very close to it, that treatment plan would be reviewed as a group.  For example, in our department, all the new patient’s decisions are discussed once a week, where we say, “We’ve seen this patient, this is the story, this is our plan.” That allows other oncologists to say, “Have you thought of such and such?” It’s a way of ensuring that we really offer the best practice to every patient. Secondly, sometimes we will have a patient who might have a really complicated situation that required additional expertise and there are groups of clinicians, for example, in Adelaide, the breast oncologist work together as part of a state network.  Not only do I talk to my breast oncology colleagues at Flinders, I can talk to the breast oncologist for the entire state to get advice.  Sometimes there might be a really unusual situation where they’ll be a particular expert in the world for an unusual cancer and I might contact them specifically for a specific case. We always tell patients that we’ll make contact to discuss the situation of someone else, so they are not surprised.  Oncologists, in general, are very generous with advice and usually honoured to be able to contribute to someone else’s care and very happy to share their expertise.  There’s only a benefit from it, I can’t think of any downsides. Joe:                 That’s incredibly reassuring to know that there’s such a great process around it.  Bogda, I’m a big fan of self-help.  It’s been so fantastic to read about finding your way, your project that looks into resilience for cancer patients.  Can you talk about what that’s about and what have you discovered? Bogda:            Sure.  Our team at Flinders, led by Dr.  Lisa Beatty, had developed an online self-help and support resource called: Finding my Way.  It’s available on the website: Findingmyway.org.au.  It’s freely available and it’s a modular set of resources that support people who are dealing with cancer treated with curative intent.  In a number of areas that include emotional, physical, practical concerns to assist them in better functioning, less distress.  We had tested the website as part of the randomised study. We enrolled nearly 200 people in a randomised setting to either use the website with our content and sub-practical activities attached to it.  All to have access to the website in a just more limited, less hands-on way, so that you could read the content on the website but not necessarily do exercises that are attached with it.  Both groups had access to the website in some capacity, but we compared the full resource against the more limited resource.  What we had found was that those people who used the full resource had better emotional functioning.  Over time, everyone’s emotional functioning gets better, but those who used the resource actually functioned better in terms of their emotions. What was really a surprise to us, but a very pleasant surprise was that they needed less access to healthcare services elsewhere.  This resource, which you could use in the comfort of your own home for free, improved the wellbeing and allowed people to use less services elsewhere.  Which is very important, especially for those people who have difficulties accessing other services.  We’re very excited about these resources and as a result, it is now available freely in Australia and around the world.  It has been taken up by colleagues around the world in other countries, in the United States, in UK, in Germany, Romania, to adapt it to their local needs. Joe:                 Yes, that’s fantastic, Bogda.  It’s one of those things, like, for example, like Cancer Connect which I only found out about after my treatment, that I’m going, “Why didn’t I know about this earlier?  You know? Bogda:            Yes. Joe:                 Bogda, I know that survivorship is an area that is very close to your heart, so what are some of the challenges that folks typically have after treatment? Bogda:            It depends a little bit on what treatment and what cancer they had.  It depends on an individual, but broadly speaking, there is a variety of challenges that people face, including physical.  For example, fatigue is a very big problem for many cancer survivors, as well as side effects of various treatments.  That might be physical disability after surgery or heart problems as a result of chemotherapy treatments or others. There are emotional concerns and fear of cancer recurrence is probably the biggest there.  As well as anxiety, depression, grief.  As well as practical concerns.  Issues relating to return to work, managing financially, sometimes changing your employment status to something different for lots of reasons.  There are a number of issues.  The good news is that for the overwhelming majority of cancer survivors, their concerns diminish with time, and their quality of life improves.  There are many cancer survivors who do very well very early or straight away. There are plenty of cancer survivors who consider the cancer experience as something that while they would never had wished for it, it also had some enriching qualities to their life.  We do know that there are many needs that need to be addressed and we do need a structural way of addressing them. Joe:                 Is there such a way?  Is there an integrated way, do you think, that looks at addressing those needs? Bogda:            Yes, there is.  Clinical oncology society of Australia has issued a model of cancer survivorship.  It’s available on its website.  It outlines all the different elements of survivorship care and that includes assessing the needs, developing treatment summary and a care plan that identifies what the issues are and how best to address them through a variety of resources that might be available.  The next step is really ensuring that cancer services provide and deliver that type of needs assessment and a care plan.  That’s the implementation of it.  It’s really the work that we’re working on at the moment. Joe:                 Yes, that’s fantastic, Bogda.  I know that you are passionate about shared care.  Can you talk about what that model is like and what do you believe is the best approach? Bogda:            I believe that we need to start from the premise that it takes more than one person to support a person with cancer.  A person with cancer usually has other needs other than cancer.  Certainly, many people with cancer also have heart conditions, diabetes, lots of other health problems, that oncologists might not necessarily be very well skilled at managing.  It is a given that some of their care needs to be delivered by others, most notably, general practitioners.  If we were to deliver care through a variety of people, that that care needs to be shared somehow between all of those different individuals.  The bit that I am passionate about is that we are explicit about it. Meaning that we agree that it takes more than one individual to deliver care, and that we are very clear on who is responsible for what aspects of care.  Then that clarity of a plan is also clear to the patient and acceptable to the patient.  Sometimes I find it frustrating that the whole discussion about shared care is just a discussion between the oncologist and a GP, without any consultation with the patient.  Sometimes that there is an assumption that everybody knows what they’re supposed to be doing, but not explicit agreement.  I think shared care can be very useful, can save patients from unnecessary appointments, extra parking that costs them extra money.  I think that to deliver good shared care is a process that involves some investment of time to clarify roles and responsibilities. Joe:                 Absolutely.  What about integrated care?  Is that something different? Bogda:            I think integrated care has got a lot of definitions.  Many of us think that we know what integrated care is, but when you really get into the nitty-gritty, different people believe different things.  I think that the term “integrated care” refers to the quality of the overall care that the individual receives from the individual’s perspective.  Very often, what integration means to people is care that is connected and coordinated. An example of care that is not very well integrated is imagining that the person has got three specialists and a GP.  They see a specialist number one on Monday, specialist number two on Tuesday, specialist number three on Wednesday, the GP on Thursday.  Every single doctor asked the question about what did the other doctors say?  There’s no communication between them.  If you think that that sounds strange, I’m afraid that does happen. The healthcare providers should have a clear plan of how they work together, how they communicate their findings, who’s in charge for what, how do you tell that the care is simple, not excessive, flows smoothly and seamlessly, it’s not an easy task to achieve but I think it’s a very reasonable aspiration to have. Joe:                 Absolutely, and I think that really ties into what you mentioned earlier about defining roles and responsibilities.  What do you think is a practical way?  How do you define those responsibilities?  Is it like a centralised thing or is it down to each individual person, like yourself, talking to a general practitioner and having that two-way communication?  How would that work? Bogda:            Well, I think that this is where the patient is the key because ultimately, it has to be acceptable to them.  For example, I sometimes have patients who really need to share their care with the general practitioner.  The patient says, I don’t like my GP and I don’t have another one.  Well, I have to start by negotiating with the patient about getting a GP because it has to be acceptable to them.  I really see that empowering the patients to be a deal breaker with regards to what is acceptable to them is a very good start.  They will identify who their team is, and they will tell me who they see as the most relevant lead to lead the team for a particular purpose. I think that those basic building blocks and be started with.  We have figured out in oncology how to bring together medical oncologists, surgeons, radiation oncologists, and we do it quite smoothly.  I think we need to broaden our horizons and we need to start bringing in GPs and cardiologists and rehab specialists.  People who are just as important but often don’t sit at the table in cancer care.  They’re a little bit invisible these days.  I think that we need to make them a little bit more visible.  We can, again, draw from the experiences that we’ve had in doing that for the more traditional cancer disciplines 20 years ago. Joe:                 Absolutely.  I think that just needs to be in place.  I know that I was lucky that I had a fantastic GP and a fantastic urologist and really incredible oncologist, but I’m not sure that they ever really talked to each other. Bogda:            Yes, exactly.  I can tell you that one of the highlights of my last year of work was I convened a multi-disciplinary meeting between a cardiologist and an endocrinologist, palliative care physician and myself for a patient who had a lot of general medical problems, as well as cancer.  We needed to figure out a clear plan for her that actually was not terrible relevant to cancer, because cancer was the least of her problems, but it was very relevant to her wellbeing.  We basically organized a teleconference because we were all in a different part of the city. We talked for an hour about what we collectively can do and identified who would be responsible for what.  One of us met with the patient and said, collectively, this is what we can do, and this is that we can’t do.  That meant that she had one consultation and advice from all of us and we were very clear of our respective strengths and limitations.  I know that is can be done, it was me testing the waters and I’m certainly hoping to do more of it. Joe:                 Yes, that’s fantastic, Bogda.  I know you’re so passionate about finding better ways to do things and improve outcomes for people.  How hard is it to incorporate research that you do into your practice? Bogda:            It’s not very hard at all because my research originates from the clinical problems that I experience when I see patients.  The research needs and the need for research solutions are right there in my face every day of my working life.  At the same time, there’s not enough hours in the day.  There are just so many things that one could do and so little time.  It’s hard and easy all at the same time. Joe:                 Bogda, when it comes to someone who made it past cancer and now, if they want to move forward and have the life that they want, what advice can you give them? Bogda:            I actually think that the advice that you give to somebody that had survived cancer is the same as advice that you give to anybody for a rich and fulfilling life.  I have a little acronym called: READY, which stands for: Relationships, exercise, active mind, diet that’s healthy, and yearning.  What I mean by yearning is a passion and purpose in life.  I think that if you can focus on those five things in your life, we know that all of them have a role to play in keeping you well and cancer free.  They are also very important in general lifestyle, which really means that cancer is not that unique in the issues of health and wellbeing.  The directions for happy and healthy life are very much similar in cancer and life in general. Joe:                 Wow, READY, is a fantastic framework.  Thank you so much, Bogda.  This has been some great advice and thank you so much for your time.  I really appreciate it. Bogda:            It’s a pleasure.  Lovely talking with you.  

In this episode, I’m talking to Suzanne Chambers who has a fantastic book that helps men deal with prostate cancer. Filled with tremendous insights and practical advice, this book should be prescribed like medicine.  In this interview, Suzanne shares: How to use your inner resources to better deal with cancer The importance of recognising your own instinctive reactions Becoming the expert on your own illness Separating the dubious advice from the truth 3 types of coping Making big decisions under stress How to deal with intrusive thoughts around cancer Links Facing the Tiger: A Guide for Men with Prostate Cancer and the People Who Love Them Suzanne Chambers Academic Profile Full Transcript Joe:                 Hello, my friends.  This is Joe Bakhmoutski and welcome to Simplify Cancer Podcast.  Today, I’m talking to Suzanne Chambers.  Suzanne is a psychologist who has been helping folks with cancer for many years.  She took all that knowledge and all of that experience and put it into a fantastic book called: Facing the Tiger.  That is specifically aimed at men dealing with prostate cancer, but most of the insights shared in this book is universal.  Suzanne is practical, down to earth, and profound.  I promise you’re going to love it.  Suzanne, I know you’ve done so much more than writing this book, but please tell about yourself, about who you are, what you do and what you’re passionate about? Suzanne:         Sure.  My background is that I’m both a registered nurse and a registered psychologist.  I’ve done many things in my professional history.  I started out as a registered nurse in intensive care.  That was a very dramatic profession.  Then I ended up working for the Cancer Council in Queensland, working with people with cancer in the community and developing community-based support services.  It was really a journey of learning for me that started there. This was back in 1989 I started working with people with prostate cancer.  My best teachers were the ones who had had cancer themselves, who were very generous with sharing their stories with me.  How I got into it, was I would go away and learn what the professions and what the research had to say, come to some conclusions about what might help people, and then I would bring it back to my community of people who had experienced cancer, and share that with them.  I’d say, “What makes sense to you out of this and how would you use this information?” It was a really collaborative process that developed my way of thinking from all of those years ago.  Obviously, that’s a couple of decades ago, that informed how I think about coping with cancer and what I say to people with cancer when I’m trying to give assistance to them. Joe:                 That’s fantastic, Suzanne, that you talk about it as a learning experience.  When you looked at the research and you tried to bring it into practice and get feedback from real-life people, did you find that in terms of the research out, did it align with how people tried to deal with it in real-life, so to speak? Suzanne:         I think it did.  The way that I look at research is, having cancer is really confusing for most people because it’s a shocking experience for most of us.  Trying to make sense of it is really hard because you’re stressed and your anxious.  The point of psychological research in this area, I always say, is to help us with a map.  To help us go, ah-ha, that’s why I feel this way, that’s what this means, that’s what driving that, therefore, some ideas for how I can help myself might be this. From my point of view, if anyone is doing psychological-type research with people with cancer, they have to be very focused on being creative in finding solutions for people to help them in a difficult circumstance, manage the best they can.  Most people are doing the best they can, most people do well but sometimes you can get overwhelmed.  That’s when having somebody who’s used to putting a bit more of an analytical brain on it can give you tips that you can try out and experiment with, to see how you go and be open to that. Joe:                 Yes, absolutely.  It kind of sounds like your approach is you’re essentially guiding people to find solutions themselves, is that right? Suzanne:         Absolutely.  Well, I don’t know about you, but the last thing, mostly I need, is someone bossing me about.  I do think people can be their own best friend, have to draw on their own inner resources and no one knows you as good as yourself.  If you can have someone be a good sounding board for you, which can be a good friend, or it might be a health professional or a volunteer, who helps you understand yourself a bit better, find within yourself your own solutions.  People are more likely to stick to their own solutions.  That’s the fact of it, we know ourselves, we know what we like.  If someone can help us find what our strengths are, what our best coping resources are, I think that’s a great way to go. Joe:                 Yes, that’s incredible, Suzanne.  How would you suggest people go about doing that, perhaps on their own, or with their friends?  How would you go about tapping into your own resources and finding solutions that are unique to you? Suzanne:         I think there is some knowledge people can gain by getting information.  There is so much information available for people with cancer.  If they’re in Australia, they can ring the cancer counsels.  There’s a 13-11-20 toll-free number that people can phone.  There’s so much online that you can look up, as well.  The framework that I have learned from people with cancer, again, that I’ve worked with, that seems to be most helpful, is the stress and coping framework.  What that means is, when cancer happens to you, it’s a major life stress.  In some ways, it’s not that different to being in a car accident or having something really difficult happen to you, where suddenly you feel threatened and the world seems different and you’re not sure what to do. In the book, I discussed this, you will react in a way as if a tiger has just walked in front of you.  You’ll have the fight or fight response.  It’s hormonally driven and we’re built that way.  We’re built that way to help us survive.  A lot of our reactions to things are instinctive.  If you understand that and you can understand why your body is acting that way, then that gives you some tips about specific strategies that you can use that might be more helpful to you.  I use an analogy where I say, your approaches to coping are your toolbox and you need more than one tool to fix a car, usually, you might need one tool for yourself.  People have a tendency, we all do this, to have a particular way that we deal with difficulties.  Some of us like to chat a lot, some of us get emotional and express our emotions, some of us like to hide away. Nothing wrong with any of that, unless it’s not working for you or you’re overusing one strategy.  The real tips are to be flexible, to be prepared to think creatively and laterally about how you might cope with the situation.  To seek information so that you’re well-informed.  To be your own best friend in that sense.  To not be self-critical about how you’re doing.  In any difficult situation, we’re all doing our best.  We’re all trying hard.  We just might need a little extra help sometimes. Joe:                 That makes so much sense, Suzanne.  One of the things that’s really helped me was going on and learning as much as I could about my cancer, learning about all the different paths it can go, learning all about treatment.  Become an expert in it, if you will.  That gave me a lot of confidence to, first of all, feel comfortable about what’s happening.  Secondly, to ask informed questions when I was seeing a specialist.  Do you find that is a good way to go about, as well? Suzanne:         Absolutely.  I love the words you used because you are the expert in your own illness.  You have to really trust your own instincts on that.  I see so often people that I’m working with cancer who just know so much about their illness because they get informed.  It really helps.  It’s good if you can try and get informed before you talk to the doctor, if that’s possible.  It makes it more likely that you’re going to really understand what he’s talking about or what she is talking about and be able to ask informed questions.  There are lots of strategies that people will suggest, like write down questions before you go, take a buddy with you before you go to the doctor, so that you’ve got an extra pair of ears. I think all of those things are helpful.  Workout with the doctor.  When I need an extra question answered, who do I call for that?  Setting yourself up so that you get home and you go, “I should have asked this, I really need to know that” and know how you’re going to get that piece of information.  Again, as I said earlier, there are lots of services around now.  Much more so than when I first started working in cancer in the late 80s.  There was really nothing around then.  In fact, back in those early years, we started running a group educational programs over a six-week period, where we would get health professionals to come in and deliver talks for people.  We would have hundreds of people turning up, the room would fill out. There was not much online, there was not much on paper, there wasn’t a helpline, not really, back then.  Now, there are lots of places people can go.  There are people like yourself.  Good to know what’s out there, be a canny consumer, as well, though.  There are people out there suggesting things that are probably not helpful, so you’ve got to think, what’s the evidence for this?  What’s the likelihood that that really would be helpful.  You’ve got to be a bit discerning.  Again, that’s where often your doctor or a good friend can play a role in saying if that really is a sensible ideal or not. Joe:                 Yes, absolutely.  Do you see this dubious advice out there?  If so, in what areas, how do you separate the truth from something that simply isn’t true? Suzanne:         If it sounds too good to be true, it’s probably not true.  That’s what I think when I go to buy a cosmetic, is that really going to make me look ten years’ younger?  Not likely.  That’s not likely.  That’s a very girly example but that’s probably not going to be true.  Is that really going to make me lose five kilos in the next week?  Probably not.  It sounds too good to be true, probably not true.  Go to reputable websites, so Cancer Counsel Australia website, there’s the National Cancer Initiative in the U.S.  Good websites.  The back of my book has a list for prostate cancer and reputable websites.  Just put your sceptic hat on.  The same goes for a whole range of things.  As a person with cancer, the same as anyone else, your money is an important resource for you and so is your time.  You want to make sure you’re investing your time and your resources into something.  You want some good evidence that it’s going to be helpful. Joe:                 Absolutely.  Suzanne, I know that you spent a huge amount of time, obviously, working with prostate cancer patients and survivors.  What are some of the unique challenges for folks with prostate cancer and what are some of the things that we have in common universally, everyone who’s facing cancer in one shape or form? Suzanne:         Cancer is a really stressful event for anyone, regardless of what cancer it is, really.  No one wants to hear that word come out of their doctor.  It’s distressing and regardless of the types of cancer you worry about, what does this mean for my future?  What does this mean for my survival?  How is this going to change my relationships?  How is it going to change my ability to work, my ability to play?  All of these things will go through a person’s mind.  The world is changed from a diagnosis of cancer.  Everybody’s world is changed from a diagnosis of cancer. Some of the ways in which it changes will be the same in the sense that the world can somehow not seem like the safe place that it seemed before.  I think we all act as if nothing bad is ever really going to happen to us, and we’re not going to get cancer.  There’s nothing wrong with that.  That’s a normal unrealistic optimism, but the reality is, cancer is really common.  If we don’t get cancer, someone in our family is likely to get cancer.  For anyone, it’s a shock when that happens.  If you then start looking at what things make it harder or not so hard, it’s harder on you if you get cancer when you’re young because you’re less established in life, you less expect to get cancer when you’re young. If you’ve got dependent children, it’s tougher because you’ve got all of those financial responsibilities.  If you’re in a new relationship, it’s tougher.  If you don’t have a lot of resources, if you’re perhaps in a stage of life where you’re struggling a little bit financially or in other ways, the added weight of cancer is extra hard.  Having said that, regardless of your place in life, getting a cancer diagnosis is awful.  Even when you’re older, you don’t expect to see that coming around the corner, for most people.  Where it differentiates more about the cancer itself is if your cancer has been picked up very early.  Obviously, it’s easier to be optimistic about that than if your cancer was picked up at a late stage, even though there are wonderful treatments for advanced cancer now, as well.  Then the types of side-effects that you’ll experience and how it’s going to change your physical life, obviously, that’s going to be really dictated by where is your cancer and what sort of treatments do you have? Are you having radiation therapy?  Are you have chemotherapy or hormone therapy?  Each of those things will have particular side-effects that a person will have to cope with.  They vary by cancer type.  In prostate cancer, things that worry men are things like urinary incontinence, although, it’s much less common these days, problems with erections and sexual life.  If men have more advanced disease and they’re put on a hormone blocking therapy, then that causes problems with muscles and muscle wastage and a range of other things.  Of course, for every cancer it’s different. For some cancers like lung cancer, a particular issue that people with lung cancer and their carers face is stigma.  We think of cancer as not stigmatized anymore, but some cancers are.  People with lung cancer often feel like folks think they deserve it because perhaps they smoked, or even if they didn’t smoke, people assume they did.  Some cancers are hard to talk about because they’re so personal, so bowel cancer can be hard to talk about and that makes it a bit tougher.  There are all sorts of unique things that people might struggle with.  Although, the core issue is, being diagnosed with something that’s potentially life-threatening. Joe:                 That is so true, Suzanne.  Cancer diagnosis also changes your self-image, the way you see yourself.  Do you think that’s true? Suzanne:         I think so.  It probably varies amongst individuals.  I know when I talk to some people they say, “I feel like a stronger person than I was before.  I feel empowered in different ways because of what I’ve had to learn.” Other people don’t feel that.  They feel that this has left me in not such a good way, that I’ve learned to manage that.  Then some people will say, I’m just the same person that I always was.  It’s a pretty personal thing.  Perhaps we can think about this more broadly.  That in life, there are many difficult things that can befall us.  We can lose a loved-one, we could lose our job.  We might end up in jail, god forbid.  Difficult things happen to people. We might get divorced, we might lose a baby, all sorts of things might happen.  When these things happen to us, I guess I think that they leave us with a mark that we have to learn to adjust to and that can be really tough to learn to come to terms with that and come to terms with, do I feel different?  In what way?  How do I create my new self?  People talk sometimes about; do you create a new self, or do you become the same person.  I think it’s a personal journey.  We all do that differently.  Most of us strive to try and find a meaning and learning something and put ourselves back together and then we get on.  That’s the nature of humanity, isn’t it?  Humanist of us all, we’re all out there struggling with different things.  Sometimes that thing we’re struggling with is cancer. Joe:                 Absolutely, Suzanne.  That’s why I love your analogy of cancer because it makes this experience feel real, it makes you go through this physical fear, instead an anxious.  As you said, this way is very natural.  Having this range of emotions is really not helpful to you when it comes to trying to deal with this.  Could you talk about why that is and what are some of the key skills and strategies that someone can use to deal with cancer in a better way? Suzanne:         Sure thing.  The analogy of cancer is a title I got from a urologist that I work with, who used to say to me, “Some prostate cancers are pussy cats because they’re very low-grade and they’re not ever going to do much, and some are tigers.” They used to say to me, “We want to catch the tigers.” That stuck in my mind about that.  I thought, you know, it is like a tiger in many ways because it’s that physical threat.  The things to remember are there are two broad categories.  Well, the broad categories of coping with a major life stress and with cancer.  One of them is what we call emotion-focused coping.  That’s trying to deal with the sadness or the anxieties. That could be crying, talking and talking, running, trying to physically get that sense out of us.  More of the stuff that we do that’s aimed at trying to relieve that feeling of sadness and tension.  Then there is problem-focused coping.  Which is coping where we go, right, I’m going to get the information, I’m going to understand this and I’m going to find out what I’m going to do and I’m going to apply a plan.  Both are important, and you need a balance of both together.  The third type of coping that has been incorporated into this model is meaning-focused coping. That’s where we go, “I’ve got to find a way in my head to understand how I can fit this within my life story in a way that feels okay for me.  It doesn’t mean I have to say it was a good thing, I’m glad I had cancer.” Really, that’s not the goal because, of course, you don’t want to have cancer, but it’s trying to set it in a sense of coherence of your life, in a sense.  What I say to people, these are all the different ways that you can cope, and you’ll have your own preferences for coping.  For some people, crying and talking to friends might be so not on their list of things to do, they don’t want to do that.  That’s okay, what else can you do to get that emotion out.  It might be that you might go for a walk-in nature, or you might watch a movie or distract yourself.  A whole range of things.  You might learn stress management techniques and try those. I worked, many years ago, I worked on a program where I was doing therapy with women with genealogical cancer and their husbands.  Part of my bag of tricks, so to speak, was to teach people deep breathing and relaxation exercises as a way, as a motion-focused coping to try and reduce those feelings of stress.  As my first lesson about what blokes don’t generally like to do.  Often, the chaps would say, there is no way I’m going to do progressive relaxation, but what I will do is, I’ll go out and hose the garden and then be quiet for a while.  Finding different ways of distraction, of getting some peace, of trying to manage those emotions. While at the same time, knowing that getting information and making a plan and making informed decisions can be helpful, as well.  The key, again, is the flexibility, if you have one way of coping and that’s all you do, that’s probably not going to be that helpful in the sense.  My example there is, if you’re in the doctor’s office and he’s trying to do an unpleasant procedure to you, like take blood or something like that, closing your eyes and imagining you’re in Bali or somewhere else and fantasizing about something else is probably a good way to dissociate from the unpleasantness of someone sticking a needle into you. If you’re in the kitchen and a family member comes in and wants to talk about the cancer, closing your eyes and imagining yourself in Bali is not going to be helpful. Joe:                 That’s not going to work. Suzanne:         Well, it’ll get an outcome that might not be pleasant.  Try different things, be a bit playful sometimes.  Give yourself a break.  People are so judgmental about their own reactions and they’re thinking, “I should be stronger than this.  I shouldn’t be upset.” Well, stop doing that to yourself.  It’s okay to get upset sometimes.  You are doing the best you can, so don’t judge yourself, be kind and compassionate to yourself and be your own best friend. Joe:                 That is so true.  I guess we put so much pressure on ourselves to be this way or that.  You mentioned the third way, which is that way of coping, which is when you’re incorporating your cancer as part of how you see yourself, not necessarily in a way that you’re saying, it’s so great that it’s happened.  Could you talk about that a little bit?  Is there a way to incorporate that into your daily life? Suzanne:         I think it’s one of those things where psychologists have a fancy name for everything, so that you all think that we’re clever, cognitive processing.  The idea that when you have an experience at some level in your mind, you’re working it through in your head.  I’m sure many people will recognize this experience, where they’ve had something they can’t figure out the answer to and they go for a long walk and suddenly without any current stimuli, the answer pops into your head because at some level you’ve been processing it and working it out.  I think coming to the point where you’ve made some meaning out of this experience is a matter of cognitive processing. Things that help processing are allowing yourself to be sad, not insisting that you be upbeat all the time, giving yourself permission to be sad.  Talking it through every now and again.  You don’t have to talk about it all the time, but talking it through every now and again, you’ll come to that point eventually.  I know I had a very difficult experience for me last year when my mother was diagnosed with cancer, she had a very advanced oesophageal cancer, so she only lived for six months, because I was so busy looking after her for the six months, I couldn’t let myself process it because I would have had too much to do, to look after her and make things the best that I could. Then I think it took me a good six months after that until I finally had worked it through enough in my head to where I didn’t feel angry anymore and I could talk about it in a reasonable way.  I think I had come to a sense of peace about that.  the time-frame for coming to a sense of peace about what’s happened varies, but it’s important, we want to get to a sense of peace, we don’t want to have this chip on our shoulder or this monkey on our back forever.  I don’t have a recipe for that, other than allowing yourself to think, allowing yourself to be sad. Sometimes people find it helps to write stuff down, picking your mark for when you walk to talk it through with someone, test out ideas about what you think this is and allowing it to change.  I know people I know who early on for the first few years after their cancer felt very tied up in their cancer identity and really saw this as who I am, I’m a cancer survivor and I’m going to have a very high profile doing this.  Then after five years or ten years or whatever or one year, they decided, I’m done with that now and I’m moving onto a different primary identity.  No rules for what’s right and wrong, just finding your path. Joe:                 Yes, I’m sorry to hear about your mum, Suzanne. Suzanne:         Thank you. Joe:                 I know in the book, I think you talk in a very profound way about making decisions under stress, how does it work and what can someone do to make better decisions when they’re facing cancer? Suzanne:         One of the ways that I describe it in the book is that if you think of your brain as your cognitive, cognitive just means thinking, your thinking work space, it’s where you toss ideas around and you weigh them up.  When you’re anxious, when you’re very anxious, your cognitive works space or your thinking space becomes a bit more cluttered.  It’s harder to find things and it’s harder to move them around.  You’re more prone to making a decision that you might later regret, just because it’s hard to think it through.  Understanding that just means that you’re in an emotionally charged situation, like you’ve just been told that you’ve got cancer, most of the time, there’s no need to make an immediate decision. Remember that you’re in shock, that you’re trying to come – how has this happened, what does it mean to me?  There might be some circumstances where an immediate decision is needed but that’s not often the case.  Sometimes the best decision is, I’m not going to make a decision until I’ve had a chance to just settle down a little bit, talk to some friends, read some stuff, maybe get a second opinion and take some time with it.  You can go through some structured process of writing down the pros and the cons, it sounds really boring and mechanistic. I know, I had a friend whose partner was diagnosed with breast cancer and they were making a decision about chemotherapy and I said to her, “This is going to sound really boring but I want you to go to remember the choices you’ve been given and I want you to do the list of the pros and the cons and I want you to circle with red the things that you really want to avoid and then see how it looks.” These were very intelligent people, who looked at me a bit funny and went, okay, then later said, “Do you know what?  That actually really, really helped because the process of writing that down and really weighing it up, it suddenly became really clear to us what decisions we needed to make.” That’s a pretty straightforward process.  These days, I was pretty interested to read the other day, it’s got a fancy name, they even call it design thinking.  It’s true, it’s about being open to different solutions, thinking laterally, getting all of the information, then weighing up the pros and the cons.  Then your decision will emerge. Joe:                 That is so true.  It’s good to hear that I have intuitively figured out design thinking when I was going through treatment.  I actually wrote down these options on a piece of paper and I weighed it up with all the percentages of the likelihood.  I have to say, it really helped me because it put things into perspective, I go, so when I look at it like that on a piece of paper, it actually makes it real. Suzanne:         Yes, it’s a good process to do for anything, really.  If you’re going to make a hard decision, writing down the pros and cons of each possible option.  The trick is, too, to be really creative of the outset.  Don’t restrict yourself, brainstorm any possible solution.  There’s a step before that actually, I should say, is getting clear about what the problem really is.  Sometimes, you can think it’s all about choosing treatment but there may be something before that that’s bothering you.  Getting really clear about first of all, what is the problem, now, what are all the possible solutions to that, what would be the pros and cons of each, then highlight and put to yourself which one’s matter to you most. Values come into it, we’re not computers, our brains are not computers, people rarely make a decision based just on the data.  We’ll have personal preferences for things.  Some people will say, I’ve had men say to me, “I don’t care, I’m just never having radiation therapy, or I don’t care, I’m just never having surgery.” They’ll have personal reasons for that that often relate to other things that have happened in their lives.  If that really is their feeling and that’s what they want to go with, then they need to understand that.  It’s like when you think about – this is a bit of a bloke analogy – so when you buy a Holden, for example, did you buy a Holden because that was the best car, or did you buy a Holden because your dad always bought Holdens? Or anything that you buy, why did you make that choice to buy that brand?  Often, it’s because in your family that was the talk about what’s the best thing to buy.  It’s a shortcut decision making strategy.  We tend to do shortcut decision making, there’s nothing bad about that.  Sometimes we might just want to have a bit more of a process than just the shortcut. Joe:                 Exactly, because we think that we are so rational when we’re actually not. Suzanne:         That’s right.  I don’t think that’s a bad thing. Joe:                 Yes, but as you say, it’s important to acknowledge that some of those things are irrational and when you use a structured approach, it gives you some more confidence around what’s happening.  I guess that could also help with dealing with negative, intrusive thoughts that you get when you have cancer, that you can’t just get out of your head.  Is there anything we can do, Suzanne, to make that better, to make those thoughts go away or stop for a period of time?  What can we do? Suzanne:         It’s a really good point because it’s really common to have intrusive thoughts.  For people that don’t know what that means, it’s, for example, you’ve been told that you’ve got cancer and suddenly wherever you are, a thought, an unpleasant negative thought about the cancer just pops into your head and upsets you.  We hate them because people don’t like these intrusive things.  The trouble is, if you push it down and you suppress it, you make it stronger.  If you tell yourself, I’m not going to think about White Holdens, I’m sticking with the car thing, you’re still thinking about it. If you tell yourself, it’s just a weird thing that happens.  If when you get an intrusive thought, you go, “That’s terrible.  I must not think that, I must not think that, you will make it worse.” Okay?  The first thing I would say is, intrusive thoughts, like that popping into your head, it’s just normal when something like this happens.  Don’t say to yourself, I’m obviously not coping well, I shouldn’t be having those thoughts.  It’s normal to have those thoughts will be stronger if you’ve got an appointment with the doctor coming up, or if you put the TV on and someone’s talking about cancer, there are things that might trigger those.  It’s part of processing the cancer experience. If the intrusive thinking gets so bad though that you can’t sleep or it’s really making you anxious all the time, then you can go and see someone to help you with starting to challenge those intrusive thoughts.  In cognitive behavioural therapy, and I go through this in the book, there’s a process of saying, first of all, become aware of the thoughts that you’re having that are driving your distress, because sometimes you’re not even aware that they’re there.  First of all, if you suddenly find that you’re feeling distressed, check yourself, what’s in your head and write it down, so you keep a little bit of a diary about what your intrusive thoughts or your worries are that keep popping up. That way, then, you can look at them and you can see if there’s a pattern.  Now, it’s quite well-known that there are typical patterns that people will have.  There’s black and white thinking, it’s got to be all this way or it’s all terrible.  There’s this black and white or all or nothing catastrophizing.  If this has happened, therefore, everything is going to be terrible.  That’s another common pattern.  Self-blame, this has happened, now it’s my fault and everybody’s going to have a miserable life and it’s all down to me getting cancer.  There are a number of different patterns.  It’s normal, most of us do it, it’s like those of us, if you go to a car park and you can’t see the car, you immediately think it’s stolen or you think I must have left it on a different floor. The reality is the same for people who think either one, the person who think it’s stolen gets really upset and the person who thinks they put it on another floor just thinks that’s boring, I’ll have to go and look somewhere else.  Same objective thing happened, emotional reaction to the two things are very different.  How you think does influence how you feel.  Awareness of that and understanding your own personal patterns, so that you can then challenge that.  It’s a common thing that drives insomnia, for example, is people who can’t sleep will often put their head on the pillow, immediately their thoughts are full of negative worries about the cancer or about anything. Then they compound it by then negatively saying, “Now, I can’t sleep, and I won’t sleep.” They get more anxious and they’re less likely to sleep.  We can torture ourselves very well with our own thinking.  I do it, too.  It doesn’t mean you’re crazy.  I do it.  I usually would think the car was probably stolen, although, as I get older, I realize it’s more likely I left it on the wrong floor.  You can get a little bit of mastery with it.  A different approach to the thoughts that some people like is, mindfulness, which stems from what is tradition and meditation.  That doesn’t work for me very well, personally, but I know it works for other people. You can try different things, you can try challenging your thoughts and replacing them with a helpful thought.  No, I’m sure my car has not been stolen, I’m sure I’ve left it on another floor.  Immediately calm you down a bit.  Same sort of thing with cancer.  Or mindfulness is more about becoming aware of the negative thoughts and then seeing then justice of thought in the present moment and trying to separate yourself emotionally from the thought.  If you want to learn how to do that type of coping strategy, you can get self-help materials about mindfulness or you can get someone to teach it to you. Or you can do cognitive challenging, one that I’ve just talked about, or another approach is to try to distract yourself to be more focused on what you’re really trying to achieve what your goals are.  Most psychologists and nurse counsellors will have a range of different types of strategies that if a person feels like it’s getting on top of them a bit, and they want to feel differently, then get someone to teach it to you. Joe:                 Absolutely.  Suzanne, if you start writing things down and you notice a particular pattern that comes up, let’s say it’s self-blame or something else, how do you challenge it?  How do you turn it around? Suzanne:         You ask yourself a question?  Is this a realistic thought?  What is the evidence that this is a realistic thought?  I got a pain in my toe, I’m sure the cancer has moved there.  Okay, hold that, let me pull back for a minute, what is the realistic evidence that that is the case, so you can challenge that thought with fact and then you can ask yourself a secondary question to say, is this a helpful thought to have?  Is it helping me to think in this way?  What can I practically do about the thing that I’m worried about?  Is this helpful?  You’re challenging the veracity and the helpfulness of that thought. Then you say to yourself, what’s a better way to think?  Replace that thought with a more helpful thought.  It’s not all about, everything’s fine, I’m just going to think positive, not at all.  It’s about coming up with a way of answering yourself that helps you to feel better about the situation.  It might be, I’ve got that pain in my toe but it’s unlikely to be the cancer because I had my check-up last week and I was fine, and I’ll be seeing the doctor again.  It’s not helpful for me to think this way, what else can I focus on?  I probably kicked my toe or it’s a bit of gout or whatever.  Then focus, direct my attention to something else that is more helpful. Joe:                 Absolutely.  Suzanne, I know that cancer is incredibly hard for people who go through it themselves but also, for their families, like I know it’s been incredibly tough on my wife and my mum.  What would you say to someone who’s supporting their partner or someone who is close to them through cancer? Suzanne:         It’s really tough being a partner of the family member, because you have to put yourself second, there’s no question about that, the person with cancer has got the cancer, your job is to support them and look after them.  You have your own fears and worries and concerns and it’s going to be exhausting.  I think first of all, you’ve got to understand that as a partner, you’re doing the best you can.  I think carers, partners can feel negative about themselves if they’re not able to relieve their person’s fears and worries and can be unrealistic about what they can do. You do the best you can to look after the person that you love who has cancer.  You remember that they’re a person still, too, it doesn’t give them permission to just be awful all the time.  They can be awful occasionally, but they’re still a real person.  That’s what I say.  I remember many years ago, someone describing to me their relative who was being really difficult, their relative had cancer.  I listener to this tale and long story and I said, “What were they like before?” They said, “Just the same.” Cancer is not going to turn people into a better person overnight.  Let’s put it into context here and let’s work it through.  In the end, we’re all people.  We’ve got our own personalities. Partners need to self-care, they need to give themselves a break, they need to every now and again go, “No, I’m going out and I’m doing whatever.” I know in my own family, my family is full of people that’s gotten cancer and every now and again I’ve thought, “That’s a bit much.” You’ve just got to negotiate that.  Be prepared to say, “I can’t do it.  I’ve got to have a break.” It’s like a conversation, I suppose, it’s like any relationship in a family, where two different people, we’re doing our best to look after each other, we’ll have misunderstandings occasionally. You’ll need to talk it through, if you can.  I say this in my book, I say, you need to talk about the cancer every now and again, but you don’t have to talk about it all the time.  Negotiating those things in some way and working as a team.  The best thing that people can do is work together as a team within the family and within a relationship. Joe:                 Absolutely.  The one thing that surprised me was that when I had cancer and I had friends and people I knew would say, “Just let me know how I can help.” I found it to be the most useless thing you can say to someone, because the reality is that now you’re in fact asking me to come up with a way to ask you for a favour.  Do you think there are better ways, do you find, to ask for help that would actually encourage people to be more positive? Suzanne:         Yes, I suppose it’s a cultural thing, isn’t it?  A lot of us come from cultural backgrounds.  Where being stoic is the thing.  We don’t need help, we’re just going to get in and march on through.  I’m a bit like that myself.  I think part of that is our responsibility when we need help as a carer, as a patient, to know that there are people who are close to use who would love to help us but don’t know what to do.  Rather than feeling indebted to them, it’s like a gift to them, they’re watching you suffer, they want to help you, they don’t know what it is that would be helpful.  I guess what I do with my friends when they’re going through an experience like this, and we all are going to have these experiences, I will actually be explicit. I really want to do something to be helpful but I’m not sure what that would be.  Give me a hint and I’m proposing; would you like me to take the kids out for the night?  Would you like me to pop over for a coffee?  Can I cook you something?  Do you want me to just stop speaking?  To be explicit about what it is that I need you to do.  Similarly, when I was the person who needed help, when I was looking after my mother, I learnt to be very explicit about what it was that I needed.  This is happened right now, it would be great if you could do X.  I had to be explicit because people couldn’t read my mind, they didn’t know what it was, what was really happening with me. The sort of help that I needed was practical help.  I was very fortunate, I had some very good friends who were able to go, “Right, I can help your problem-solve that problem, Suzanne, and work that through.” I think sometimes the problem is within ourselves, in that we’re a bit of a stoic nation, in many ways.  Not everyone, of course, it differs.  The tendency to think you’ve got to be strong.  Sometimes being strong means being prepared to ask for help. Joe:                 Yes, that’s fantastic advice, Suzanne.  Sometimes you just need to be very straightforward and direct about what you need. Suzanne:         Well, that’s it.  Whether it’s saying, your neighbours are driving your crazy, can I drag them off for you?  What can I do?  They are very practical things.  Some of that as a carer and a friend and supporter is just being observant, notice what’s going on and see if you can notice what’s an external stressor affecting the person you care about and try and get that away from them if you can.  I always think practical help is a really good thing.  Can I come over and shall we go for a walk together?  What can I do? Joe:                 Absolutely.  As you point out in the book, it takes special courage to really deal with cancer.  What could someone do to be more resilient through these tough times? Suzanne:         I think everybody who is coping with cancer has courage because they get up the next morning and they face whatever is in front of them.  I think we probably don’t recognize our own courage often enough.  It’s really just all the things that I’m talking about.  When you need support, seek it.  When people offer you support and it would be helpful, take it.  Look around you at what is available for you, find things that give value and pleasure in your life and build them in.  Do those things, take time for yourself.  If you think of your energy as a bucket and difficult times leak water out of that bucket, you’ve got to put water back in.  Find ways to fill your bucket. Joe:                 Absolutely.  In your experience, what are some of the most common misconceptions that people have around cancer? Suzanne:         That’s a hard question, actually.  What would I think there?  I guess people fear cancer treatments, but cancer treatments can be difficult but there are good supportive care services and treatments around to help you get through that.  As a person with cancer, you should know that your opinion is important and what you want is important.  You have a right to a second opinion and to ask questions and if you doctor won’t do that for you, get another one.  You have a right to have care centred around your need, and you might need to be assertive around that.  We all know now cancer is not contagious. People used to shy away from people with cancer, that’s not so much the case anymore.  Try to find out information so that you can allay many of your fears and understand realistically what is ahead of you.  Know that most people cope with cancer pretty well.  They get through it.  They move through it.  The sky looks blue again.  You can feel like – I had a sister who had breast cancer when she was quite young and even I worked in the field, I was absolutely shocked.  I still have this memory where I’m a bit of a catastrophizer, you might have picked that up.  I just thought my job was to look after her and suddenly the world looked like the worst place for me, a dark place. Do you know, that one day, suddenly, I noticed that sky was blue again?  I was so sad, I felt like that sky was never going to be blue and beautiful again, but it was.  It took some time, but it got there.  It can be hard sometimes to know that there is a light at the end of the tunnel, but there usually is.  Sometimes we’ve just got to be a bit patient until we get there. Joe:                 Yes, Suzanne, you’ve met a lot of folks going through cancer.  Was there a moment that touched you the most? Suzanne:         Do you know what I think?  I think when I was first in the field and I was a mother of a young baby and I found if I was working with parents who had small children who had cancer, I think that’s because I could so imagine me in their place, that must be one of the hardest things to face.  Again, what I learned over time is how strong people really are, and how parents can band to get through that experience.  There’s difficulty in life that comes to us, no one cancer is better or worse, in a sense, really, to the person that’s experiencing that, it’s what matters to them right now.  Someone once said to me, you know, Suzanne, suffering is not a competition.  I thought that was a great thing when I heard that because I think at the time, I was going, “It could be worse.” They were saying, “What?  You want your leg broken, as well?” A competition.  People should remember that.  We have a tendency to go, “It could be worse, or it could be better.” It’s your experience that matters. Joe:                 That is so true.  Suzanne, as a researcher, did you ever stumble upon something that made you go, “Wow, this is really special, I’m onto something here.” Suzanne:         Do you know, the special things I have learnt had more been talking to people with cancer.  I’m a hard-working researcher, I work hard at trying to make things better for people with cancer, that’s the point of my research.  The most beautiful insights I get from people who have talked to me about what they’re going through, I suppose what that’s thought me is just how different everybody is, and how special people are in terms of their ability to look at what’s happening to them.  From my external point of view, I see people in very difficult circumstances who are doing such a great job, and I marvel at the ability of human beings to help each other and to look after their families.  That’s a special case. Joe:                 That’s really amazing.  Suzanne, thank you so much for your time and everything you’ve shared here.  This is really fantastic.  Suzanne, if someone wanted to find your book, how would they go about it? Suzanne:         Okay, so the book is called: Facing the Tiger.  A guide for men with prostate cancer and those who love them.  It is published by Australian Academic Press and so you can look them up online and buy a copy.  It is also listed in Amazon, in an electronic version that you can download to your Kindle or whatever.  If you Google Suzanne Chamber, Facing the Tiger, you should be able to find it, but Australian Academic Press will have copies and, as I said, Amazon sells it, as well. Joe:                 Thank you so much, Suzanne, it has been profound. Suzanne:         Thank you so much for your time, as well, Joe.  

In this episode, I’m talking to Karen Barrow, a New York Times journalist who has put together a truly unique and inspiring project to tell the story of what happens when the treatment ends. This book should be on every cancer patient’s coffee table for those dark times when you don’t know if there’s a light at the end of all this… Stay strong, you can get through it! Here’s what we talk about in this interview: Why survivor stories make you feel less alone The universal emotions through cancer we all can relate to The importance of seeing the light at the end of the tunnel How you deal with cancer is a choice Why some people reject the term “survivor” The naturally occurring shift in priorities when you get cancer Links Picture Your Life After Cancer (Amazon) Picture Your Life After Cancer (New York Times) Well Blog (New York Times) Karen’s Work at New York Times Full Transcript Joe:                 Hey, this is Joe Bakhmoutski and welcome to Simplify Cancer podcast.  Today, we’re going to hear from Karen Barrow, who’s put together this incredible, this inspiration books called: Picture Your Life After Cancer.  It’s really amazing and I hope you check it out.  Let’s get into it.  Karen, thank you so much for doing this.  I really appreciate your time. Karen:              No problem. Joe:                 Karen, your book puts cancer in a really different light.  I guess in many ways, people find positives, a new appreciation of life, is that something that you expected? Karen:              Just a little background, we stated Picture Your Life After Cancer online, as a digital project, in 2010.  It was primarily a way of collecting images of people who were dealing with cancer, who considered themselves after cancer.  After cancer for a lot of people could be after diagnosis, or after treatment, or after cure, or after accepting death or a relevant death.  I didn’t really know what I would get.  It was amazing to see the percentage of stories that came in, that were very positive and that were stories of people who found spins to put on their experiences that helped them appreciate life more, helped them appreciate friends and family more, and help them appreciate their own health more. Joe:                 Absolutely, because it’s given – I’ve seen a lot of books and I’ve tried to find a lot of resources online, offline and everywhere.  I think your book really captures a voice that is missing, a voice that hasn’t been heard before.  Do you feel that voice is heard out in the greater community, like do people have maybe a better sense of what cancer is about?  I know it started as an online project and turned into a book later, do you think people have a better sense of what it’s like? Karen:              I think within the book, people can find stories that they relate to, and that helps them feel less alone in the process of going through cancer, because if you’re going through treatment, it’s very individualized, it’s very specific to you, the kind of cancer you have, the treatments you’re choosing, how you’re choosing to deal with side-effects, but the impact it has on your mental psyche and your family and your friends is more universal than I think people realize.  If you go through the book and you read stories from other people, you’ll find some that you have nothing in common with, but you’ll find plenty that resonate with you and it makes your experience feel less unique and, in that way, easier to understand. Joe:                 Yes, absolutely, because I find when I was going through it, I remember that there wasn’t really much out there that is positive, because there is a lot of academic resources and there are a lot of biographies and things like that.  There really isn’t anything that is positive, that is in the title of your book, Picture Your Life After Cancer.  You can say, “Wow, I’m going through all of this horrible stuff right now, but there’s a light at the end of the tunnel and I know that there’s going to be a positive after that.” Karen:              Yes, well, I, personally, haven’t gone through a cancer experience, thank goodness.  I think that’s true.  I think it’s true of any chronic illness, when you’re dealing with it, it’s very easy to get stuck in the tunnel, like, this is my life, it’s never going to end, I don’t see what’s going to happen afterwards.  It’s helps to hear from other people, from regular people who don’t necessarily have a book deal and can get their biographic written or tell their stories about what it’s like on the other side.  I hope it gives people something to aim for in the process. Joe:                 Yes, absolutely.  In the introduction of the book, you say that the stories are told about new adventures, new milestones, the new-found happiness, but also loss and sadness and confusion.  Are these emotions, are they universal, do you think? Karen:              I think they’re very universal.  I think for all the people who tell the positive stories, they survived cancer and they went on a trip to Paris to celebrate or they got married, or they found some happiness in the end, I’m sure there was sadness also built into that.  It’s a very complicated, emotional thing to go through.  People can choose to take which side of it they want to, a lot of people told very positive stories, a lot of people told very sad stories, a lot of people lost their way as a result of cancer.  They were religious before and they just decided they didn’t believe in god anymore, because it just didn’t fit with their experiences anymore and they were sad as a result.  There was a depression as a result of cancer.  It’s a very multi-faceted outcome.  I think what I’ve learned is that a lot of it has to do with how you choose to perceive the experience. Joe:                 Yes, that’s pretty amazing, that you say it’s about a choice.  The choice that you can choose to be positive and that you can choose to aim for something better and be a better person.  You can choose to pull yourself out.  Did you have that feedback, that for most people, having that light at the end of the tunnel, having something to look forward to, is that something that would keep them going? Karen:              I think so.  A lot of people, if you flick through the book, you see pictures of friends and family, children, spouses, relatives and for a lot of people, it’s that that kept them going.  There are even a lot of pictures with people with their cats, dogs especially.  Just knowing that there was somebody or something to live for and to suffer through the hardships of treatment for made it worthwhile for them. Joe:                 Yes, absolutely, even personally, I used all of this visualization myself, just thinking about it, I had a picture of my son, and when I would be going through treatment, without physical, I would carry it in my hand and with the drip with the chemo stuff, that I would have this mental image of him.  That would really give me this positive rush to keep going.  I think that’s what a book like that does and that’s what positive stories do from your family, from friends, but also from people you don’t k now.   I had your book lying down there on my coffee table and there would be times when I would just pick it up and open it and look at it, at other people.  Even complete strangers gave me a sense of hey, I’m not alone here. Karen:              Yes, it could be nursing staff that helps you get through it, it could be a religious community or your neighbors.  It’s very easy to feel alone when you’re the one getting chemo therapy in the hospital and going all the time for that and just getting lost in the process.  Finding a human connection can help pull you out of that funk, too. Joe:                 Did you have a sense that people have met connections with medical staff, with oncologists, nurses, were those stories coming through? Karen:              Yes, there were a handful of people.  Those stories we selected for the book were just a small piece of the number we got online.  There were plenty of people writing thank you notes to their doctors, especially to their nurses and to the caregivers in their lives, whether their loved ones or hired help.  In times of need, those are the people who help lift you through it. Joe:                 Yes, absolutely.  Karen, I was really struck by a quote, that sharing stories is really a reminder that we’re not alone.  It’s simple but an elusive truth.  Was it something that you were thinking of when you started this project? Karen:              Yes, a lot of my work that I do, I started as a health reporter.  As a digital producer, I did a lot of work thinking about evergreen stories, because everything you put on the internet lasts forever.  I like the idea of telling stories, like you said, are just as relevant now as they could be in ten years.  Research studies are important, and the medical community are making great strides in finding new treatments and evolving medical care and cancer care.  The human stories don’t really change.  I’ve done several projects on chronic diseases and people telling stories of chronic diseases. I find that the themes aren’t very different from one disease to the other.  Sure, the hardships are different, whether you’re dealing with arthritis or you’re dealing with cancer or you’re dealing with Alzheimer’s, how you adapt is very different.  Underlying all of that, it comes down to how do you move from day-to-day with a chronic illness?  How do you mentally let yourself move past the fact that you’re sick and live life? Joe:                 Absolutely.  Karen, what were some of the things that people say that help them on this journey?  With dealing with chronic diseases, with cancer particularly, what were some of the things that helped them through the emotional journey? Karen:              A lot of it is really putting a positive attitude on, even when you’re upset and down in the dumps and feeling sorry for yourself, is finding a way to get out of that.  Even if it’s – some people have hobbies.  I’ve met a couple of younger people who would play video games and lose themselves in that when they’re feeling upset.  It’s wonderful, they have a place to forget for a few minutes that they’re not well.  A lot of people have hobbies and interests that they found ways of adapting their abilities to continue doing. I interviewed a few comedians who’ve had illnesses and they just find ways to make fun of themselves for what they’re going through.  That’s obviously not for everybody.  For them, laughing at themselves helps them get through it.  If you’re determined to find a coping mechanism, there are ways of putting positive spins on what you’re going through or merely putting aside the fact that you’re sick and trying to forget about it for a little while can help your psyche for a little while. Joe:                 Exactly.  It’s not really a glamorous experience.  It’s made up of all these little moments, like waiting for your next oncologist appointment, or not knowing how the treatments worked, or being around people who cared about you, playing video games, doing the new standup comedy routine.  People have an entirely different perception of it, just if you read blogs online or if people talk about this heroic survival, how do people reconcile the fact that it’s really not about that.  When people go through cancer, you don’t feel like a hero, you feel like a regular person who’s just trying to make it through to the next milestone. Karen:              Yes, a lot of people I’ve found reject the word “survivor”.  They feel like it’s too heroic of a title.  Nobody asks to have cancer, nobody chose to have cancer, they just got it and they figured out how to deal with it.  For a certain portion of the community, they appreciate the term survivor because they did go through it and come out the other side.  A lot of people, they don’t like that title because it’s just like, this was the hand I was dealt, and I figured out how to play the cards.  It’s not that I’m a survivor, hopefully anybody else given the same deck of cards would figure out how to get through it, as well. Joe:                 Also, survivor implies powerlessness in a way.  That also could have negative connotations, as well, for your self-image, right? Karen:              Yes, you’re in control to a degree but you’re not in control to a degree.  If you didn’t survive cancer, whose fault is it?  It’s not really your fault, right, because the cancer was too aggressive, or the treatments didn’t work, or it was caught too late.  It wasn’t as a result of something you personally did wrong.  That’s another good point, yes. Joe:                 Karen, there were so many amazing stories that went into the book.  You were selecting things from a myriad of stories that you had online.  That must have been a really difficult process.  How did you choose what goes in there? Karen:              It was very challenging, the book itself was photo-driven, we started with the best photos and the photos that captured the stories that were being told.  Then secondarily, I wanted to make sure there was a variety, so a variety of ages and races and genders and experiences and positive stories and negative stories and people who lived and people who didn’t live and people talking about relatives versus people talking about themselves.  It was important to me to show that range of people who told their stories and hope that it represented the range of reality of the people out there dealing with this. Joe:                 A bit of it goes back to the same theme that it’s universal, that everyone goes through it, no matter who you are, your age, where you live, your ethnicity, your religion, it’s down to human experience, it’s down to the individual. Karen:              Yes, and I wanted people to flick through the book and maybe see a face that looked familiar or maybe see a story that read familiar, or maybe saw a picture that appealed to them.  Everyone has different tastes and interests and diversity.  I wanted to make sure that that mix was included. Joe:                 Absolutely.  From personal experience, Karen, I can really say that life after cancer will never be the same.  That also makes me reassess my life before cancer and really start looking at things in a different light.  Is that something that is common, in your opinion? Karen:              Yes, a lot of people talk about a shift in priorities, and how things that were once so important to them just feel petty now.  Maybe they were caught up in work and they were busy all the time with work and they did their work to the sacrifice of their family.  Then they went through this experience and they realized that it just doesn’t matter at the end of the day and the loved ones are the ones that appreciate them.  Or vice versa, frankly, if you had a poor relationship with a spouse.  There were stories of people who said, “I went through cancer and I realized it’s not worth suffering with a spouse that doesn’t treat me appropriately. I ended the relationship and I wanted to concentrate on me and live a happy life.” It definitely, in many cases, it led to a shift in priorities and a shift in values.  Some people found religion, some people lost religion.  Some people had new motivation to run a marathon, run a triathlon, travel the world, climb a mountain, just to be able to check that off their box.  I think, in general, people just have a better appreciation for the days that they’re given.  They realize that time is fleeting. Joe:                 Yes, time is fleeting.  That’s a crucial thing, when we talk about fleeting time, do people talk about the fact that they need to do more with that time, how do people talk about time? Karen:              They want to appreciate it, they want to appreciate it more and they want to make sure that they’re spending their time on the things that are meaningful to them.  For some people, that’s lazing around on the couch with their family and just hanging out, for some people, that’s checking off their bucket list and making sure they accomplish everything they want to accomplish.  For some people, that’s training for marathons and running and getting in the best physical health and hopefully extend that life.  For some, it’s not.  Everybody values time a little differently.  Some people are just trying to figure out what to do with their time that they’re given now. Joe:                 Absolutely.  Karen, we touched on some stereotypes because there are so many stereotypes, like fighting cancer with your boxing gloves on, that survivors are heroes or that cancer is a death sentence.  A lot of these stereotypes are simplistic and, in many cases, they’re not true.  Fighting presumes, like what we just talked about, that fighting presumes that you can win just because of your mental toughness and willpower.  Do you think these attitudes are changing in the society, with all of your work at the New York Times, is that changing at all, do you think? Karen:              I think so, I think people are a little more sensitive to the fact that cancer to a degree feels random.  Obviously, there are things to raise your risk of various cancers but at the end of the day, who gets it and who doesn’t get it, it’s unclear why to a certain degree.  While treatments are getting better, they’re not perfect, there’s no cure, so you don’t want to blame the individual if they don’t successfully make it through treatment, because that’s not necessarily their fault.  If they follow their doctors’ orders and they get all the treatments that were prescribed for them, that’s not their fault if it didn’t work, it’s medicine’s fault. Joe:                 Yes, absolutely.  Is there a sense of the stories that people want to tell in the media, is there a difference in how people want to talk about cancer survivors?  Are people specifically going through treatment right now?  Do these stories, is that a voice that is heard enough in the greater community? Karen:              I don’t know, I think that people would want to be able to tell their stories.  I think people want to be able to tell stories that relate to them without being put in a box and without being lumped in with cancer survivors or they’re battling cancer, or they’ve failed treatment.  Everybody’s an individual and every story is unique.  I think the people who want to share their stories want to make sure that their voices are heard. Joe:                 Do you think that those voices, those stories, are they being heard by government organizations, medical specialists?  Are these stories something that gets incorporated into healthcare, into wellness, that side of things? Karen:              I think more and more so.  I think the medical community is realizing the importance of treating the whole person and not just the disease.  You can see that through support groups and the fact that doctors might connect somebody who’s newly diagnosed with somebody who has already had the diagnosis.  That’s happening more and more, so that they have a mentor or somebody to help steer them through the decisions that they’re going to have to make and the process. I think social workers, for sure, understand that concept, that we’re not treating a disease, we’re treating a person.  That person has a family and that person has a life, and those people want to do specific things.  Treatment decisions are made knowing that.  If something is going to effect you one way, but that way it’s going to effect you might hurt you emotionally more than some other thing, that might be part of the decision-making process for treatment. Joe:                 Absolutely.  Now, more people are living after cancer than ever before.  It’s great news.  Many folks have different needs in terms of adjusting to life and to hopefully avoid some late effects and some side-effects, as well.  When it comes to our media and our community at large, how do they see cancer survivors? Karen:              I think the people who know people who have gone through it are more sympathetic or more understanding than the people who don’t.  I think the stereotypes, unfortunately, still exist I think people who haven’t had to deal with the experience first-hand, like, the only thing they have to reference are those stereotypes, or the stories they’ve read of famous people dealing with their illnesses.  It’s a little bit like anything else, it’s hard to know what you don’t know.  People who just haven’t experienced it, I don’t think they can fully understand what the experience is like. Joe:                 Yes, it’s so difficult, isn’t it?  Yes, like you say, to relate to something you don’t know. Karen:              Yes. Joe:                 Karen, you have a blog on wellness, how did that come about?  What would you say are the three big takeaways about healthy living that you can share? Karen:              The blog is called: Well.  It’s a vertical of the New York Times, it’s certainly not my blog.  What Well focuses on is personal health.  We’ve broken personal health down into five pillars of mind, body, food, fitness, and family.  We consider those the five pillars of personal health.  The whole concept of the blog is the small changes that you can make in your life to improve it.  Whether that’s just knowing that drinking a glass of chocolate milk after a run is probably the best thing to do to prevent soreness versus how to deal with your spouse, versus finding somebody to relate to after a cancer experience, Well is devoted to helping people just live better lives day-to-day outside of the medical office. Joe:                 What were some of the specific takeaways that you found that could really help someone to help deal with cancer or to just live a healthier life? Karen:              I think some of the most surprising things for me are always the mental angle, because mind is so important in your health and the importance of whether it’s meditation or self-reflection or just sitting in a quiet room just taking a few moments and stopping and thinking and trying to change your attitude and things like that, like, how important the mind is to your body.  We keep saying, your cancer experience could be happy or sad and it’s just a matter of the spin you put on it.  The people who have a positive attitude, they’re making an effort to do that.  Just being able to do that is important to your health. Joe:                 Karen, I’m a big fan of self-help because I believe that this is one of the things that, in terms of mental health, that really doesn’t get as much attention that it actually deserves.  How much of the articles that you see and some of the things that you put together, how much of that is something that people can really put to practice in their daily life? Karen:              The majority of things that we put out on Well are things that you can put out into practice.  There are a lot of fitness tips, there are a lot of mental wellbeing tips, and there are a lot of food tips, and relationship tips.  That’s your everyday life.  You wake up, you say hi to your spouse, you say hi to your kids, you go to work, you have lunch, you come home and exercise or you don’t, and you come home grumpy, you come home happy.  Every day, these are these little small things that you decide to do that could affect your overall health.  Do you sit at your desk for five hours’ straight?  Or do you get up every 20 minutes and take a walk?  Very simple things that we can suggest for you to do to help improve your overall health. Joe:                 That’s fantastic.  Karen, if someone wanted to check out your book or your other work, like the Well blog or your articles, what would they do? Karen:              Picture Your Life After Cancer is available on Amazon.  You can also see it online if you go to newyorktimes.com/pictureyourlife.  That’s where the digital version of it is.  You can also just Google Karen Barrow.  You’ll see other work that I’ve done. Joe:                 Fantastic.  Thanks so much, Karen. Karen:              Thank you.  

In this episode, I’m talking to Darryl Mitteldorf who shares what is unique about men facing cancer and other insights and perspective from helping folks as the oncology social worker. Darryl goes above and beyond to help men who face cancer as well as the gay and lesbian community in dealing with cancer through many innovative projects delivered by Malecare, organisation founded by Darryl. Here’s what you going to find out in this interview: Crucial and unique challenges for men facing cancer How to work through your feelings when you are diagnosed Unveiling the biggest myth about men and cancer The voice for gay and lesbian and transgender and bisexual cancer survivors Why some folks run away when they found out about your cancer Overcoming dating challenges for cancer survivors A unique way to keep track of your symptoms and why that’s crucial for your specialist Why now is the perfect time to be selfish when you are dealing with cancer Links Malecare LGBT Cancer Project Cancer Match Cancer Graph Health Unlocked Full Transcript Joe:                 Hello, my friends.  This is Joe Bakhmoutski and welcome to Simplify Cancer Podcast.  Today, we’re going to hear from Darrel and his insights through the years he spent doing oncology social work.  He has done so much incredible stuff, with helping the gay and lesbian community deal with cancer, helping the underprivileged.  He created this amazing dating website for people who had cancer, and he’s had so many other great projects.  Truly, Darrel is a voice that needs to be heard, so check it out.  Darrel, thank you so much for doing this.  First, I want to start with, I want to really ask you, why did you become a social worker and how did you become involved in oncology? Darryl:              A thousand years’ ago, when I was younger, actually, I think about 34 years’ ago, I actually left college and started working in banking.  Made a lot of money in that, then took a year off, like a delayed gap year to travel around.  I volunteered in a couple of refugee resettlement camps and camp back to the States where I live.  I thought, what better way for me to spend my time?  A friend of mine clued me into social work as a profession.  Her husband was HIV positive and finally died from that.  She became a social worker and I just followed her to the university that she went to, NYU.  Yes, it all started from there.  A very gratifying career. Oncology, though, my dad was diagnosed with prostate cancer a few years after I had become a social worker.  I started looking into that.  There’s been a lot of unsettled work around psychosocial issues in oncology and cancer survivorship.  I thought, rather than focus on refugees or HIV or the old stuff, where it’s already overpopulated with social workers.  In the late 1990s, there were really very few American social workers looking at cancer survivorship, so I thought that could be a place I could be innovative and make a contribution to the field. Joe:                 Yes, absolutely.  That’s quite a change from banking into social work.  It definitely feels like it’s very personal, you’re so involved.  What drives you on, Darrel, what do you want to achieve in what you do? Darryl:              It’s partially revenge.  Cancer took my dad’s life and the lives of a lot of people in one sense.  It might even take mine one day, so far, I’m lucky, but who knows?  It’s a field where you can really see tangible results, with drug addiction or refugee resettlement, you never really know what’s going to happen with a patient after you’re through with them.  With cancer, they’re either happy or sad.  The work that I do has very little to do with helping people live longer, but it has everything to do with helping people to live better and be happier in spite of their diagnosis and in spite of all the stressors of the stating treatments that they have to undergo.  It’s a very warm and fuzzy feeling I have every day when I can see the work that I’m actually doing play a big part in people’s lives. Joe:                 Absolutely, Darrel, that’s fantastic.  You’re obviously doing some fantastic work, specifically working with men, Darrel, what’s different about men facing cancer?  Do we have different needs?  Do we express things differently? Darryl:              No and yes.  No, we don’t have different needs, in that, we want to not be diagnosed with cancer, that we want to not need to be treated and we want to live rather than die.  The differences are more in the realm of concrete stuff.  Like it or not, in 2018, men are still the primary income creators of a family or if they’re living by themselves, they’re taking care of themselves.  Most of society around the world is still patriarchal, there are very few matriarchal societies.  There’s a certain sense of: I have to take care of this, that women diagnosed with cancer don’t feel.  Then there are myths around this.  Like, men don’t speak about cancer or men have to be strong and not admit that they’re ill and such.  Over the 20 years that I’ve been working with men and cancer, I’ve just found that not to be true.  People talk about it a lot and people will use that as an excuse to not treat men equally, as well as they treat women with cancer.  In fact, men cry just as much as women do, men get depressed, men express themselves when they’re asked to.  The problem with me is, it’s not so much that it’s a man who has cancer, but it’s the way people react to a man with cancer.  It’s more likely that any male or female doctor will speak to a woman and ask her how she’s feeling.  It’s rare that a male or female doctor will ask a man diagnosed with cancer how he’s feeling.  That, I think, are some of the critical differences. Joe:                 Yes, definitely.  They always assume that you don’t want to talk about it. Darryl:              Yes, in fact, why am I sitting here if I don’t want to talk about it?  I’m in your office, I’m paying you an amazing amount of money, either through insurance or out of my pocket.  I’m here, you be here, too. Joe:                 Yes, absolutely.  I guess from experience, I can say that most people feel completely overwhelmed when they’re facing cancer.  What advice would you give to someone who’s going through it right now? Darryl:              You’re human, feel whatever you’re feeling.  It’s ridiculous to say to someone, “Feel better than you do or feel X, Y, or Z” because that’s your idea of the best thing to tell them, or the best thing for them to feel like.  Somebody just told you, you have a good chance of dying sooner rather than later.  Your reaction is just as valid as anyone else’s.  The second thing is, after you get through those feelings, then you have to figure out what you want to do about the cancer itself.  It’s a disease and it’s real. We’re still in medieval times when it comes to treatment.  There are no real cures for pretty much all of the cancers that are out there.  There are only things that we can do to delay the onset of death.  That’s really a good way to think about it, how to turn cancer into a chronic disease, rather than a deadly disease. Joe:                 Absolutely, Darrel.  One thing that’s helped me is going onto specific cancer forums.  I’ve been on testicular cancer forums a lot and I’ve been asking about symptoms and I’ve been asking all kinds of things about how this affects my sex-life, and everything else.  It’s been incredibly important.  I found that immersing myself in facts, immersing myself in information has tremendously helped me to deal with it better.  Do you notice, in the work that you do, that this kind of understanding, I think what you just mentioned, understanding the facts, understanding treatment, understanding what’s going on around you can help you to deal with it better? Darryl:              Completely.  When you’re in the dark, you stumble on things, when you’re in the light, you can find your way through things.  That sounds like a silly cliché, but I think it’s very truthful around understanding cancer.  Where is the person who really understands what cancer is about, unless you went to med school or something?  To know something that relaxes you, takes a lot of tension off.  Then that gives you the tools in order to talk to your doctors.  Like, when you had testicular cancer, I’m guessing you had more than one doctor.  I’m guessing you also had nurses and oncologists and all sorts of people playing out in your lives. Then you had people telling you, “Did you talk to this or that?” Then you had the online communities perhaps suggesting X, Y, or Z.  To be able to feel confident in your own treatment choice-making is really a big deal.  Also, it gives you the sense that you did the best you could, no matter what the outcome is.  When your head is on your pillow for the last time, you shouldn’t feel a sense of regret that you blew an opportunity or something, you should know you did the best you could, it’s unfortunate that we’re not in the year 3018 instead of 2018.  We just have the tools that are available for us today to fix ourselves.  They’re not all that great.  We do the best we can. Joe:                 Yes, absolutely.  You mentioned the pressure on the man to the primary welfare provider.  What advice do you have on dealing with that sort of pressure? Darryl:              It’s pressure.  There’s not really much you can do about it.  Cancer is expensive.  There’s no cheap way to deal with disease and cancer is one of the most expensive diseases to treat.  Financial toxicity is as much a side-effect from cancer as being bald or feeling fatigues.  When you don’t have the money to take care of yourself or your family, or when you’re put in a horrible position of having to choose, do I pay for this drug versus put food on the table?  That’s a stressor that there’s just no way around. Definitely here in the United States, where we don’t have national healthcare and such.  Where many people who are economically deprived or don’t have large incomes, that are really just dying sooner rather than later because they just don’t have the cash to pay for treatment.  With our current administration, obviously, it doesn’t look like that’s getting any better. Joe:                 Yes, absolutely.  What do you think about the support that folks expect to get from their family, their friends, from people around them, maybe their co-workers?  Do people generally get the support that they need?  Could they do something differently to maybe speak up, to get better support? Darryl:              Yes, certainly, pretty much everyone around you will either stick with you or they’ll run away.  It’s usually one or the other.  It’s rare that someone’s in the middle ground.  The ones that run away, don’t chase them.  They’re wherever they are and they’re not going to be helpful to you, they’re dealing with whatever’s going on for them, as a consequence to you being diagnosed with cancer.  The ones that are with you, they’re your friends, they’re your family, they’re not doctors. They’re not going to know what to say or how to make you feel better, except in the sense that they’ve done that well in the past.  If you had a friend who was soothing during a relationship that went wrong three years, or helped you through a broken leg, that’s probably a friend who will know how to talk with you around cancer.  If you have a family member who wakes up an extra hour early to help you get to the toilet or whatever, that’s somebody who’s useful.  No one is ever going to be perfect.  If you do ask somebody who absolutely knows the best things to say and is the most comforting creature on earth and all of that.  Either that’s your dog or that’s an extraordinary person in your life.  We’re all people and we all have human reactions to hear about cancer.  There’s no right or wrong about it, it’s just the way it is. A lot of people live alone.  In the United States, it’s like 49 percent of all adult males over the age of 40 live alone.  That’s extraordinary.  I didn’t know that until about two and a half/three years’ ago working on a research thing on being single and having cancer.  Loneliness is a consequence of cancer, as well.  Imagine living alone and then you have this disease that people say, “Who do you have to talk to?  Or who do you have to take care of you?” When you don’t have anyone. Joe:                 That’s a staggering number, Darrel.  It kind of wakes you up a little bit.  I remember when I was on the forums and I was going through treatment and there was a guy there saying, “Look, I’m just about to start chemo, I don’t know what to expect, should I be freezing meals and putting them in my freezer because I live by myself and I really don’t know whether I’ll be able to get out of bed and just buy basic groceries.” I remember that shocked me.  I thought, people are dealing with cancer and treatment on this level, where it’s loneliness. Darryl:              Yes. Joe:                 Darrel, when we flip that around and if we talk about the caregivers, like, I guess if you’re a partner or a close friend and it’s someone in your family, because it’s really tough for them, what can you do to make it easier for them?  How can you help them through this time which is incredibly stressful? Darryl:              There are two answers to that.  One is, so what?  It’s like, now’s your time to be selfish, at least for a small part of your diagnosis, certainly the early days you should be, or you have the permission to be selfish.  It’s a good question, especially for people with children.  I mean, young children, like, nine/ten-year-old’s, what do you say or not say?  There are no clear answers to that.  The thing to suggest to people is, what kind of situations did you have that were somewhat similar or were remotely similar and how did you behave with your kids or your family members then. Then just repeat that with a higher context of having cancer.  Really, there’s no clear answer to that.  Family members, the dynamics of your family and friends hasn’t changed from the day before your diagnosis, to the day after.  In the sense that, if you didn’t like them then, you’re not going to like them now.  If they didn’t like you, they’re not going to like you any better because you’re diagnosed with cancer.  Cancer diagnosis happens within the middle of many changing changes in relationships, both with kids, as well as adults. All of this returns to the fact that we’re human.  There’s a certain relaxation about that, that you’re not going to get this right or wrong.  You’re just going to flow through it.  The better posture is to understand you’re going to make mistakes with everyone, but that’s okay because there’s no rulebook around this. Joe:                 Yes, absolutely.  I love what you said about being selfish, I completely agree with that.  It’s something that I’m almost afraid to admit to myself, but this is a good thing to be. Darryl:              Yes.  Being selfish is also a way to being very clear as to what your needs are.  One of the problems that caregivers have is not knowing what the diagnosed person actually really wants or needs.  If you’re 100 percent selfish, you’re very clear as to what you need. Joe:                 Yes. Darryl:              That helps the other person, who will either decide, “Well, I’m going to help this person out or I’m going to think they’re an ass and walk away.” Clarity is a good thing.  In most cases. Joe:                 Yes, absolutely.  Darrel, what are some of the other challenges that typically get overlooked when we talk about cancer? Darryl:              Well, money we talked about, emotional life in terms of feeling loved, even if you live alone to know that you love yourself, that you didn’t cause your cancer.  I think one of the big things around cancer is that I make my own cancer.  That’s kind of rare.  If you live in a toxic wasteland or in Chernobyl, yes, you did screw yourself, sorry about that, but you did.  Rarely, somebody caused their cancer.  That’s important to know and to feel comforted by, that you didn’t do it to yourself.  Well, 20 years’ ago, I started the field of LGBT cycle oncology.  Nobody had been looking at gay and lesbian cancer survivors. Many doctors were asking, what did they do to cause their cancer?  As if gay and lesbian patients did something different than straight patients around cancer diagnosis.  The obvious thing around prostate cancer, did the anal receptive sex cause your prostate cancer.  I can point to half a dozen urologists today that believe it does, including a very well-known one in Washington.  That’s crazy but people will take their prejudices and insert it into their specialties around cancer.  The sense of blame or blaming is probably one of the least talked about and most-toxic aspects about being diagnosed, I think. Joe:                 Yes, absolutely.  What is the reality like, if you’re gay and lesbian, I guess if you’re a gay man and you have prostate cancer, what is that reality like and what would you say to that person? Darryl:              Well, it’s hard to talk to your doctor, basically, you have to find a way to either have a doctor that you’re very cool with or you have to find your own strength to say, “I enjoy sex with other men, what will my life be like after treatment?  What will my sense of identity be like?” Since most prostate cancer treatments cause impotence or remove sex drive.  What will that be like for me as a man who enjoy sex with other men, since I’ve basically been out as that identity?  One of the treatments for prostate cancer is quite similar to the punishment that gay men used to receive in the 40s/50s/60s, which is to take androgen deprivation therapy and to basically have your testosterone removed, so you’re basically chemically castrated. Now, it’s a treatment for advanced stage disease and pretty much everybody welcomes that because it seems to have a good effect and adds a couple of years to your life, but imagine being a gay man and saying, “Here’s this treatment that, if you were arrested in the 1960s, we’d offer it to you, as well”?  There are all sorts of weird things around that.  I fail to understand how in 2018 we can have so many doctors who a, don’t care enough to learn more about their gay patients, and two, are just afraid to speak to their gay patients and ask them, what do you need from me?  What kind of sensitivity or treatment or what better explanations for treatment do you need from me?  On one hand, it’s good that the field of LGBT oncology is growing. It’s big in Australia.  Prostate Cancer’s Foundation of Australia is very, very good around gay men.  There are a couple of universities that we hear male care work with that have fairly strong research.  We can tell gay and bisexual men and transgender women, that there’s science behind a lot of what we now know around gay and lesbian survivorship.  It’s still a decade or two away from being a fair and equitable medical treatment for LGBT cancer survivors. Joe:                 Yes, absolutely.  Darrel, please tell us about your LGBT cancer project, what’s that about and what are some of the issues that really need to be spoken about out loud? Darryl:              The LGBT cancer project started in late 2004.  It’s literally the world’s first non-national, non-profit organization or NGO focused on gay and lesbian and transgender and bisexual cancer survivors, from a patient’s point of view.  There are many cancer-focused organization, from Live Strong and Prostate Cancer UK.  You could name a thousand.  This was literally the first in the mid-2000s.  Imagine how long it took to get there.  That it took me, which, really, I’ve never been an activist in the gay community, it took me until my 30s to put that together.  It was something that people disliked me for initially.  Now, it’s been replicated in the UK and a number of other countries.  I think the value of it is obvious.  It’s necessary.  The LGBT cancer survivor community needs an organization that can provide both advocacy and the marketing of the idea that it’s this unique niche of people that have particular treatment needs. Joe:                 Yes, obviously, a lot of the folks you deal with, they feel that they’re in trouble.  Is there a story, Darrel, that has really hit home the most for you? Darryl:              They were all poignant.  I’m still flattered and like the idea of when somebody writes and email saying, “Thank you” and this and that.  That’s highly gratifying and encouraging.  Not just for me, but I don’t work alone, but a lot of people that work with me, not just in our organization, but there are lots of other organizations that have similar programs now.  Nothing really strikes home in the sense that I don’t want to say one person’s extraordinary story is more important than another person’s banal story. They’re all important because we’re all individuals that have stories.  They’re all worth hearing, whether it’s like, “Thank you.  I learned about a particular drug that was helpful.” Versus a story where a lesbian couple fighting their way through a hostile system, so that one could visit the other, in the same way that a heterosexual man and wife could visit.  We actually had a couple of them like that.  They’re all important stories.  That’s how it should be.  Stories are good for fundraising and good for media and this and that but, in fact, everybody, individually, has the same value and I think that in itself is the main story that we want to tell, is that everyone is important. Whether you’re going to die in three days in complete agony or you have a manageable disease that you’ll die from a heart attack when you’re 100.  If you’re diagnosed with cancer, you’re not in a good place.  That’s important for both ends of the spectrum. Joe:                 Yes, I guess the thing that rings through from what you’re saying is equality.  People want to be treated differently in all walks of life and that includes cancer, right? Darryl:              Yes, everyone is different.  Whether you’re in a refugee camp in Rwanda or in Syria, or you’re in the highest income neighborhood in New York City.  It’s not that you’re in a better situation or worse situation, it’s that you’re in a different situation, with different needs and different abilities to access healthcare, and a different understanding of what healthcare is.  Cancer is cancer for everybody.  It may be slightly understood better here or there and certainly there are different levels of intelligence among people.  Somebody who went to Harvard law school is probably going to be able to read stuff better than somebody with a third-grade education or something.  That obvious stuff aside, everybody is the same, you don’t want to hear that you got a disease that can kill you. Joe:                 Yes, absolutely.  Darrel, I don’t know if you also started Cancer Match, which is a dating site for cancer survivors.  It got me thinking that my partner was really incredibly supportive for me, but not everyone is so lucky.  Like we talked about, one way or another, folks end up in the position where they want to meet someone who really gets them, who they love.  You must have really also felt strongly about that, to start Cancer Match. Darryl:              Yes, it’s basically a dating site for cancer survivors.  Cancermatch.com.  Also, cancermatch.org goes there, as well.  The idea that when you’re dating, you sit down, and you tell the person opposite you, “I do this, I do that.” You tell them you have cancer, that’s like, “Where’s the check?  I got to go to the toilet and never see them again.” When you have two cancer survivors dating, you both know that when you say you’re feeling nauseous, it’s not because they look bad tonight, it’s because you’re feeling noxious, or you have a headache or something. Or, imagine a date where you go to the doctor together and you hang out in the waiting room.  You find different strategies to enjoy your lives together.  That was the original idea.  You know, that you don’t have to explain so many different things that are scary to people who are not diagnosed.  It’s worked out brilliantly.  We’ve had marriages out of that thing.  There are usually about 800/900 people that are active every day and every year, there are about 8,000, or 9,000 last year, new people signing on.  It’s not the largest dating site in the world. Joe:                 Thank god for that. Darryl:              Yes.  Nice to be here, sorry you’re here.  Yes, it’s super cool.  If that were the only thing I did in my life, I’d be very happy. Joe:                 That’s fantastic.  Darrel, tell me about Cancer Graph, how did this come about?  Why do we need it? Darryl:              Cancer Graph is a mobile app.  It’s 13 months’ old now, we launched it in January of last year.  It came from the idea that symptoms and side-effects are hard to keep track of.  There aren’t symptom and side-effect recording apps, in fact, predated ours.  None of them were very easy to use.  None of them created a graph that showed the progression of symptoms, so you could visually see, “I had a toothache on Wednesday, Thursday and Friday.  Or I was feeling nauseous three days in a row”, or whatever.  What it also does it, directly connect with your doctor.  If, indeed, you are nauseous three days in a row, your doctor can call you up and say, “You ought to drink some water because you’re at risk of dehydration.” Believe it or not, that kind of app didn’t exist until I came up with it, actually, and we developed it here.  Now, it’s been used for a while, it’s been written about in peer-reviewed journals.  The Landslide had a really favorable article about it.  It’s in China.  We have to translate it in Chinese, Italian, a couple of other languages and some more to come.  It’s remarkable how Cancer Graph has taken hold of the world of cancer survivors.  Doctors are recommending it to patients and such.  When you sit with your doctor, the doctor hasn’t seen you for a month or two months and they say, “How are you doing?” You’ve got 30 seconds to spiel out what it is you’ve been feeling. Instead, you can actually hand that doctor a piece of paper or have it sent directly to their office.  They can see, here are specific days, times, and locations where you’ve felt a very precise way.  I had a moderate sense of pain in my hip.  I had an extreme sense of neuropathy in my right hand.  My eyesight was fuzzy for three days in a row or something, three weeks’ ago.  You can’t remember that stuff.  Nobody is good at keeping diaries.  I have yet to meet anyone in my life that’s ever kept a diary. I’m sure there is someone, but I haven’t met them yet.  The nice thing about Cancer Graph is, it’s designed so well that it literally takes seconds to record anything that you’re experiencing.  Mobile phones are in our pockets or on our bed strands or laying by our side, everything can be recorded easily.  Even if you blow off a third of what your experience is, you have two thirds of recordings to show your doctor.  Those things can be life-saving because they can moderate treatment. You can change medications based on cancer prep.  Particularly around prostate cancer, we have urologists and oncologists telling us, they’ve modified treatment based on the findings from their patient’s cancer graph.  That’s super cool.  Yes, we’re happy about that.  Your audience can download it, it’s free.  It’s on iOS and Android.  It’s free for the world to use. Joe:                 Yes, that’s fantastic, Darrel.  I know that if I had dollar every time I walked out of an oncologist’s office and thought, “I should have asked him about that symptom that I was feeling three days ago, that I completely forgot about.” Yes, that definitely would be a huge help.  That’s actually another way for people to find out about yourself and what you do with male care.  I know that this is how I stumbled upon your good self.  I actually read about Cancer Graph in the Cure magazine.  I thought, I’ll Google this Darrel guy and yes, that’s how I found out about you.  I go, wow, you’re doing so much more than Cancer Graph alone. Darryl:              Yes, that’s interesting because I did not know it was written about in Cure Magazine.  We do get a lot of press on it.  I’m a social worker.  It’s not like we have a press office here, or anything.  I’ll look through that, or you could email it to me.  It’s good that you found it.  Finding information is so much better now than it was five or ten or 15 years ago.  Imagine being a cancer patient 20 years ago, before really most people had computers.  You’d have a book and brochure and that’s it.  Now, you have massive online communities. We run one on a platform called: Healthunlocked.com, which everybody is welcome to.  We run an anxiety support community that has over 31,000 people on it.  That’s incredible.  It’s a way for our doctors to learn about us as patients.  To be able to look and see what people are talking about.  It’s not just that the communities make better patients, it makes better doctors if they took the time to look. Joe:                 Yes, absolutely, Darrel.  I guess with all of this amazing work you did for male care and otherwise, all of these fantastic initiatives and projects.  It must cost a lot of energy and a lot of money.  How do you get funded?  Do you get sponsorships?  Do you partner up with people?  How does this work? Darryl:              Well, all of that, but it’s the generosity of strangers.  It’s, like, people will donate.  I encourage your audience, obviously, to go to malecare.org and make a donation, but by serving people, people who have the wherewithal to be grateful, usually are grateful.  We have the usual corporate sponsorships like any other non-profit.  There’s no surprise there.  I think people will be surprised with how little influence that actually causes.  There’s always this idea if you take money from McDonalds, you’ll start pushing hamburgers or something.                         Really, it doesn’t play out that way.  I used to joke, like, I can’t be bought by half a tuna sandwich.  I can’t even be bought by massive amounts of money because there’s really nothing to buy.  We don’t have really anything to sell.  It’s like when corporations offer us money, they like to be affiliated with an organization that does good things.  If it helps McDonalds to say, “We’re helping male care and look at how good our hamburgers are really good hamburgers.  Ronald McDonald is a really good guy or whatever.” Yes, there’s nothing you can do about that.  It doesn’t influence anything.  Happy to take your checks, but really, most of our money comes from individual donations.  Some of them are quite large but more are like two and three-figure checks or donations by PayPal or whatever.  It’s not just one or two, it’s many thousands of those and they add up.  Then it gives us the privilege and honor to do these really good, great innovative things that help even more thousands of people.  Especially people who can’t afford to make donations.  All of our work goes around the world.  Also, we could not do this 20 years ago, or even ten years ago, it’s all internet bonuses, so to speak. We can have free downloadable apps, like Cancer Graph, that all comes from individual donations from western countries or developed countries that are now benefitting patients in developed countries and underdeveloped countries, or undeveloped neighborhoods.  There’s plenty of poverty in Australia, United States, everywhere.  There’s a really good bonus to any donation done to an organization like Male Care.  We’re not the only one but I certainly think that we’re one of the better ones.  It’s an honor. When people write a check, it’s their vote of confidence in what we’ve done and/or, it’s their gratitude for what we’ve done for them.  That just makes us cry with gratitude.  It’s genuine.  It’s really great.  Things cost money.  Writing code, I mean, Cancer Graph took two and a half years to make.  I did 78 iterations of it and algorithms are all you need, which is why it works so quickly.  That didn’t happen overnight.  A lot of people put in a lot of hours into that product.  Cancer Match takes a lot of moderation.  There are spammers.  Stuff, to get Play Stations, that you can then convert into bombs or something. That’s another show and a different kind of show.  Being on the other side of a dating site or a community side.  It’s not just about Russian escort services.  It’s really like geopolitics and how to find romance.  A lot of these scammers are actually behind really bad organizations that are looking for funding to create products that kill other people.  There’s a lot of work involved in ferreting those guys in the now and protecting our genuine core community.  All of that stuff costs money.  Just because it’s time and then it’s electricity.  Our server stuff is one of our bigger expenses. Joe:                 Yes, absolutely, Darrel.  That’s fantastic.  If someone wanted to really find out more about the project you just mentioned, the ones we just talked about or even something that we missed, perhaps, or even to participate if someone wanted to be a part of it or maybe to help fundraise?  What would they do?  How would they get in touch with you?  What sort of websites would they visit? Darryl:              Malecare.org is a good starting point.  M-A-L-E-C-A-R-E.org.  It presents itself initially in English, but you can see at the top part of the screen that there are a lot of languages, I think eight or nine different languages that most everything is translated in.  Yes, however you got in touch with me, if you read about Male Care, you’re welcome.  We love email.  Being able to know what people want or what they’re suffering, helps us to figure out what to do next.  We’re not an insulated community or organization.  We actually reach out to people in focus group and make phone calls to people and say, “What do you need?” We don’t sit around waiting for people to tell us, but when people do tell us, that’s useful.  That’s helpful for everybody.  Yes, malecare.org.  M-A-L-E-C-A-R-E.org. Joe:                 Darrel, thank you so much.  You’re an inspiration. Darryl:              That’s very sweet of you to say.  Thank you.    

In this episode, I’m talking to Kate Williams, exercise physiologist who the creator of Movement Against Cancer program. Kate specialises in exercise oncology and gives some fantastic, real world advice on how you can use exercise to support you during and after cancer. In the interview with Kate we get to find out more about: how exercise helps crush cancer during treatment and recovery the importance of regular evidence-based prescriptive exercise how to find the sweet spot by pushing yourself far enough without exhaustion practical ideas on healthy habits including nutrition and mindfulness types of exercise that are most helpful when dealing with cancer Links Movement Against Cancer Exercise and Sports Science Australia Cancer Council Victoria Full Transcript Joe:                 Hey, Kate.  Thanks very much for taking the time to speak to me, I really appreciate it.  Can you please tell us a little bit about yourself, what you do and what are you passionate about? Kate:                Sure, well, thanks very much for having me on today, Joe.  The first thing is, I’m an accredited exercise physiologist.  I’ve been practicing for about eight years now, working with people with a whole range of different chronic medical issues.  At the moment, I work at DNA Health Group, which is a private practice based in Cheltenham, in the Bay Side Suburbs of Melbourne.  About four years ago, I realized that I had a bit of a passion and an interest in exercise oncology and co-founded the movement: Against Cancer Program around that time.  Yes, really specializing a bit more in that area.  In terms of work, that’s what keeps me ticking.  Personally, I like keeping active myself.  Lot of road cycling particularly.  I like taking my little dog down to the beach and having a bit of run around.  Other than that, what am I passionate about?  All the typical Melbourne things, food and coffee and my football team. Joe:                 Yes, which is? Kate:                Hawthorn.  Big Hawks fan. Joe:                 Fantastic, Kate.  In your experience, what are the most common misconceptions that people have around cancer?  Is it even a good idea to exercise when you have cancer?  If it is, what are some of the benefits of exercise during cancer? Kate:                The biggest misconception is probably a pretty obvious one, is that people feel that it’s not safe, which is understandable in a way, because historically cancer patients have been told to take it easy and rest.  Why would someone who feels sick, why would they feel like the best thing to do is a workout and spend what little energy they feel like they have right now.  The thing is, we certainly have plenty of evidence to say that exercise is perfectly safe.  In fact, to my knowledge, I’m yet to see a study that suggests exercise isn’t safe.  There are definitely very good arguments to suggest that anyone who is undergoing treatment for cancer or has undergone treatment for cancer in the past should be doing exercise.  The list is very long in terms of benefits.  I don’t know how much time we’ve got. Certainly, we know that it really helps people to cope better with treatments, particularly with things, common side effects, fatigue is a big one, pain and nausea.  It also can really help to stabilize some of the body composition changes that patients go through.  For example, a lot of men who undergo hormone treatment, they lose a lot of muscle mass and they gain a lot of body fat.  We know that exercise can help to basically reverse that process, or at least maintain it.  Bone density can be a big issue with these treatments, as well.  We know that exercise can help maintain bone density.  This obviously could increase strength and fitness and improve people’s everyday function.  All of those activities they do on a daily basis can become a bit easier with the right exercise program.  It also has a wonderful effect on mental health, and I think that’s a really important one to state. Obviously, depression and anxiety are quite common for people that are going through cancer or have been through cancer, and exercise has been proven to help keep these things at bay, or a release for these things.  It’s really important that we mention again that it can actually help to improve patient’s life expectancy, both in regard to the cancer itself but also through some of the other chronic issues that come from cancer treatments.  Unfortunately, cancer survivors are more prone to things like heart disease and diabetes.  We know that exercise can help keep those away, as well.  Really excitingly, perhaps, we need a bit more evidence around this, but that exercise can actually help the efficacy of cancer treatment, as well. Particularly with chemotherapy.  That’s a bit of a watch this space one, but yes, there’s some very exciting research happening in that field.  With all these long lists of benefits with exercise, I think the thing about it is, if it was a pill, if you could get exercise in a pill, pretty much every doctor, every oncologist would be prescribing it, if it was that easy.  Yes, we really think of it as medicine. Joe:                 Yes, that’s fantastic, Kate.  I know that when I was going through chemotherapy and my uncle had recommended me to do walking every single night, even though I was really down, really feeling really flat.  I know that that alone has helped me tremendously.  Like you mentioned, the mental side of this, but also physically.  It gave me more energy and I actually felt better over the long-term.  That’s really cool.  How do you know, Kate, you know, when you’ve pushed yourself far enough with exercise, but not too much?  How do you find that sweet spot? Kate:                That is a great question and it’s a really important one and one that I get asked quite often, actually.  Exercise intensity is really important because if you push yourself too much, you could leave yourself feeling sore and tired, which we don’t want, obviously, but if you don’t push yourself enough, then you’re potentially not going to get the benefits of what it is you’re trying to achieve.  It’s important we find that balance and that happy medium with intensity.  In the clinic here, we use tools like heartrate monitors and ratings of exertion to measure whether people are working at their right intensity.  When my clients are working out independently at home, I get them to use a really simple test called the Talk Test. Basically, what that means is, when you’re exercising, so whether you’d be going for a walk, or going for a swim or whatever it is that you’re doing, you should be able to, if you were with someone, hold a short conversation with them.  If you’re finding that you’re having to stop and take a breath and it’s becoming quite hard to hold that conversation, or if you could imagine that you were, you’re probably pushing too hard.  On the flipside to that, if you could breakout into a song, if you could sing, then you’re actually not working hard enough.  That’s a really good basic test that you can use to find the right level of intensity. Joe:                 That’s a great tool.  Is there any specific type of exercise that someone can do right now that will help them get better with treatment? Kate:                Look, it’s going to be different for everyone, that’s a really important thing to say.  As exercise physiologists, we’re very much focused on prescribing exercise for the individual.  Everyone’s situation will be different depending on the type of cancer that they have, the type of treatment that they’re going through or have been through, among lots of different things.  The exercise that they used to do previously and all of that stuff.  It’s important that I say that, as well, when we’re talking about the safety of exercise, that’s if it’s prescribed appropriately.  Certainly, one of the best things that people can do is just try and continue on with their day-to-day activities. A lot of people stop these when they’re going through treatment and that can really feed into the fatigue and actually make it worse.  It’s important that we try and keep those going.  Those things that keep you off the couch and just keep your moving, they’re what we call: Incidental physical activity.  That’s really important for keeping fatigue and also, depression and mental health in a good space.  A really great mantra that I use around this, as well, is something is better than nothing and more is better than less.  If you’re achieving those two things.  If you’re achieving those two things, then you’re probably in the right zone for yourself. Joe:                 Perfect, that makes sense.  Kate, many of us face challenges after treatment, like the lingering side effects, or things like cardiovascular disease and also, mental health and dealing with anxiety.  What if the cancer has come back?  That sort of thing?  What can a cancer survivor do to get into good shape physically? Kate:                Well, I think if we can break down the exercise a little bit further into some more specific guidelines.  It’s talking about keeping up your incidental physical activity, but there are three different kinds of main exercises that I get most of my patients to do.  I emphasize, again, that things need to be individual but when we talk about exercise, we often talk about cardiovascular exercise, which is what you’re doing with your walking, so it’s very important to get a form of that happening because that’s the one that, again, is very important for keeping your energy levels up, keeping heart disease away. The second type of exercise that we prescribe often, and this is one that a lot of people are often missing, which is resistance exercise or strengthening exercises, that’s to help you maintain a good muscle mass.  You won’t get that from walking, but you can get it, obviously, from doing things like lifting weights.  You don’t need to have any equipment, a lot of things you can do at home, you don’t need any equipment, or you can just use things around the house.  Things where you’re basically putting your muscles under a bit of stress, such that they’re forced to adapt and to grow to be able to manage that stress on a continuing basis.  We know, again, that those exercises are very effective for helping you stay in good shape but keeping those fatigue and those other side effects at bay.  The third type of exercise that we prescribe, as well, often is some flexibility-based exercises. They’re really good for keeping your joints nice and mobile, keeping the limberness in the muscles and reducing a lot of that stiffness that a lot of people tend to feel, as well.  A lot of people might already be doing this through things like yoga or Pilates.  It’s a fantastic form of exercise, as well, just for a bit of stress relief and good for mental health, as well.  They are three types of exercises that you should definitely try and include in your general routine for, as you say, maintaining shape. Joe:                 Is there any specific type of exercise that someone can do right now that will help them get more energy, maybe lose weight, or maybe they’re two separate things? Kate:                Yes, again, probably the main two that I would suggest from those two perspectives.  The combination of the cardiovascular and resistance exercise is going to be very important for both of those things.  If you’ve got more muscles there, your body is going to find it less taxing and not have to use as much energy to perform a task.  Whether that be picking up potted plants in the garden or carrying the groceries around, you’re not going to find that as tiring if you’ve got the muscles and the strength to be able to do that.  Likewise, if you’ve got more cardiovascular fitness from doing your walking, your swimming, your cycling, dancing, whatever it is, you’re going to find it easier to be able to things throughout your day, and that’s not going to drain your energy bank as much.  In regard to weight loss, which is a different aim, but the exercise modalities that we would prescribe for that are actually fairly similar. Obviously, diet needs to come into that side of things, as well, certainly, resistance training is actually very important for people trying to lose weight as well, because lean muscle tissue is what burns fat.  If you’ve got more of that, that’s going to raise your metabolism and actually make it easier for you to lose weight, or even it might be for some people just helping to maintain a healthy weight.  That’s a really important point, if you’re just doing some cardiovascular exercise and trying to lose weight, to make sure that you’re including some form of weight training in your week, that’s going to be more effective. Joe:                 Speaking of diet, I know it’s a completely different area and we could probably spend hours talking about that alone, but what in your opinion are some specific and also, realistic things that you could recommend to someone who is facing cancer? Kate:                In terms of diet? Joe:                 Yes, in terms of diet.  Yes, just broadly speaking. Kate:                Yes, that’s okay.  Look, I’m a really firm believer in utilizing food as medicine.  I think a really great place to start for a lot of cancer patients and people that have been through treatment is just with the food pyramid that we all probably would have seen, but whether we could name all of the sections of it.  It’s easy to look up.  The thing is, a balance diet, really, whichever stage of treatment you’re at I think is a good place to start.  In terms of helping your energy levels and whether you’re looking to maintain weight or lose weight.  I would like to highlight particularly that protein is very important.  Particularly if you are doing those strength training exercises and trying to build a little bit of lean muscle mass, whether that be for weight loss or to maintain bone density or strength, the amino acids that protein contains are the building blocks to helping you build that muscle or maintain that muscle.  It’s very important that you consume different sources of protein throughout the day. I think that’s an important point.  Obviously, it can be a little bit tricky for some people with different medication that can affect appetite.  There can be a few other issues in there, as well.  I think if it’s something you want a little bit more help with, exercise physiologists can give you some general guidelines, but certainly I’d recommend getting some guidance of a current practicing dietitian, when you want a bit more guidance or struggling with weight in some form.  They’re the experts in their field.  It’s relatively easy to find one on the DAA website.  They’re a great place to find that information. Joe:                 Okay, that’s great.  Many of us would also benefit from changes in our lifestyle.  What would you say would be some of the habits that you could put in place to make your life better, but in a way that is sustainable, that really isn’t torture, for want of a better word? Kate:                I love that word, “Torture.” Joe:                 You must get that a lot. Kate:                Sometimes.  I think the first one to outline is particularly for people who haven’t really done much exercise in the past, or they’re just starting out after a long break, is not to think to put too much pressure on yourself and that it’s not going to be really hard slope to start out with.  If someone’s getting you to do that right off the bat, then you’re probably not quite in the right place.  It should just be starting with moving more.  I think that’s a good way to think about it initially.  It doesn’t have to necessarily be structured sessions, but just if you’re not really doing a lot right now, consider that if you’ve got some shops that are ten minutes away and you need to get some milk, maybe that’s a great place to start, with just walking there. For some people, even just going to the letterbox might be enough.  It might be just getting off the tram line one station earlier and including movement in your day that way or taking the stairs.  All of that counts towards that incidental physical activity that I was talking about.  I think another one that’s really important is prior planning, particularly if you are suffering from a bit of fatigue, and a bit of a lack of motivation, as well, just planning some steps through your day can really help.  Even in the exercise physiology world, this is what we often term as pacing.  If you’re having a busy day doing something and it might be you’ve got some family stuff on, and you’re already on your feet a lot, that might not be the day to do a big exercise session or go for a longer walk that day.  Or you might be looking at that day thinking, “I’m probably not going to feel like cooking a healthy meal that night.” Maybe you’ll put your exercise off until the next day or maybe the day before, you’ll have prepared some sort of meal and you can pop that in the freezer so that’s ready to go for that night. I think that’s where keeping a diary can be quite useful for a lot of people.  We do that with a lot of our patients here.  They can put those steps in place to help manage life, as a whole, better.  The other thing I was going to mention, actually, in regard to physical activity.  Something that can be quite useful for people, pedometers or Fit Bits.  They’re really good.  If you’re lacking a bit of motivation because they’ll show you if you’re hitting targets and they give you something to work towards, but at your own pace, as well, which is very important. Joe:                 Yes, because it’s really important to see progress, right? Kate:                Yes, absolutely.  They give you that measurement, they show you how you’re going, which is if you’re not really motivated, that can really help when you see that in front of you. Joe:                 That makes a lot of sense.  Is there anything else, Kate, that you would recommend to someone to stay in good shape, physically but also mentally and socially, as well? Kate:                Diet is a really big one, obviously.  We already touched on that.  Got a lot to do with energy levels and that holistic health.  Staying in contact with family and friends, absolutely, and letting them in with what’s going on as much as you can, if you feel comfortable.  A support network is very important, I think.  Having those people around you.  If you don’t have a lot of those people around you, you may find – I know in talking to David, he mentioned a couple of times the Cancer Council and they have some fantastic resources that you can use if you don’t have those people to call on immediately around you. Psychologists are fantastic if you’re not coping, as well.  I can’t recommend their services highly enough.  The other thing that I think is coming to the fore more recently is mindfulness, which I think maybe you touched on with David, as well.  I haven’t seen a lot of research specifically on mindfulness and cancer, but I do have a few patients that have been certainly practicing it.  I’m an advocate of it myself, a practicing advocate.  Certainly, they report very positive benefits out of it, in terms of managing anxiety and particularly around times of treatment or when they’re coming up to scans, it can really help them cope.  The research that I have seen, does show that it helps slow aging down.  That’s got to be a benefit for anyone, right? Joe:                 Yes, absolutely. Kate:                That’s a winner.  I think, again, watch this space, I think this is something that will come more to the fore in some research about cancer.  If you’re interested in it, there are some great apps out there that you can just simply download to your phone for free, which you can pick it up from those. Joe:                 That’s fantastic.  When it comes to exercise and also, creating healthy habits in general, is there something that people tend to overlook or perhaps it’s something that people are not doing right? Kate:                I think just on a general level, I think often people just don’t seek the advice that they perhaps need, or they’re too afraid to seek the advice from different people.  Whether that be about exercise.  I know a lot of people often they’ll come in and say, “I wish I did this earlier.” That’s a really common one.  I’m sure that’s not just about exercise but also, diet.  If they’re struggling emotionally or with mental health, to find that support because there are so many sources out there.  I think that’s why it’s great that you’re doing this service for people because sometimes it’s just that people aren’t aware of them.  Certainly, again, the Cancer Counsel is a great place to start in seeking support for whichever types of these issues that you feel need addressing. There’s an expert in essentially everything today, they’re out there and they’re willing to assist, but it’s just finding the right one for you, but certainly don’t be afraid to start with your oncologist as a starting point for asking those questions, if you’re wanting to get started with exercise, you can always bridge that with them and say, “Well, who should I see?” Put in place some steps to find an exercise physiologist. Joe:                 Absolutely.  Speaking of that, I know you’ve started your own program called: Movement Against Cancer, can you please tell us a bit more about that? Kate:                Yes, sure.  Movement Against Cancer, or MAC as we call it for short, is the program that we developed here at DNA Health Group.  Completely developed and run by our own accredited exercise physiologists.  Basically, it was coming to fruition because we were seeing a lot of people with cancer and we just saw this gap.  We knew that there were so many benefits for cancer patients, for them to undertake exercise.  We didn’t really have any programs for that, that we knew of.   We thought the process should be fairly similar or my philosophy is that there’s stage one, two, and three programs for people that have heart disease or heart issues.  The benefits are similar if not stronger for cancer patients, so why should there not be a program the same, when there are one in two people now being diagnosed with cancer. We feel like this is something we really need.  That’s how MAC came about, and obviously through my own interest in oncology, we see people through any real stage of their cancer journey, I suppose.  Whether they’ve just been diagnosed, if they’re currently undergoing treatment or a couple of years after treatment.  The sooner the better, though.  Our practitioners basically work to determine with these people, what do you want to get out of the program.  Do they just want to feel better?  Do they want to get back to running 5km for some people?  Depending on what those goals are and what their condition is, we can put together and individualized program to help them achieve this.  That can be an involvement in one or a combination or different streams.  We have one-on-one sessions with an exercise physiologist. We have supervised group classes, where the exercise physiologist is in the room with the participants the whole time.  In those group classes, these people still perform their own exercise program but they’re in there with other people.  That’s a fantastic social environment, a lot of people enjoy that one.  We also can devise home programs or programs for other gym facilities, if people are already enrolled with other gym facilities.  We can even take our services to home.  It’s a very flexible broad program.  We’ve had great success with it so far, which is good. Joe:                 That’s fantastic, Kate.  Good on you.  I know you’re big on having an exercise program that is evidence based.  Can you tell us a little bit more about what that is and how that’s important? Kate:                Definitely.  As accredited EPs, we’re working under a code of conduct when we do our accreditation each year and this code of conduct states that we must keep up to date with the most current research.  We do that to prescribe what is essentially optimal for the individual person.  If it’s not proven safe by research, basically, we won’t do it.  It’s really important that we state that because it’s a good thing, but the research particularly based around cancer is constantly being updated.  There’s new stuff happening all the time, which is fantastic.  It very much means that we need to keep abreast of it, so that whenever we see a person, we can definitely say, “We can show that this works, and we can tell you that this doesn’t.  We’re going to only give you what works.” Yes, it just means that it’s a sound program all the time.  Yes, that’s how it works pretty much. Joe:                 If someone wanted to be a part of the program, or to work with your individually, what would they do to get in touch or find out more information about you? Kate:                Yes, the best thing to do is probably jump onto our website which is: www.movementagainstcancer.com.au.  Our contact number and emails are in there.  There’s also, obviously, a fair bit of information about the MAC program on the website.  We have Facebook and Instagram accounts, which are constantly being updated with research articles in relation to exercise oncology.  They’re well worth a look, if you’re interested.  The other thing I’ll just mention is, because hopefully, presumably, you have listeners from all over the place and they’re not necessarily all close to us here, that if you’re interested in getting in touch with an accredited exercise physiologist, you can of course ask your oncologist. The other thing you can do is jump onto the ESSA website.  ESSA.org.au.  That’s our national accrediting body.  On there, there’s actually a search engine for exercise physiologists, so you can pop in your postcode.  You even have the ability to search EPs who specialize in cancer and find one that is close to you.  It’s got to be convenient, right?  Yes, that’s a really good thing to do, as well, if you’re not Melbourne based. Joe:                 Cool, fantastic.  Well, thank you so much, Kate.  It’s been fantastic.  I really appreciate your time. Kate:                Pleasure.  Thanks for having me, Joe.  

In this episode, I’m talking to medical oncologist David Pook from Melbourne, Australia. David treated my cancer and he has been incredibly positive and supportive throughout. In the interview with David we get to find out more about: the biggest development in cancer treatment this decade one of the most common misconceptions that people have around cancer DNA testing and ethical challenges moving forward psychological fallout from cancer diagnosis the importance of regular exercise during treatment when do get a second opinion how cancer awareness eradicates guilt Full Transcript Joe:                 Hi, Dave.  Thank you so much for doing this.  I’ve been really looking forward to this.  Please tell me about yourself.  What do you do?  What are you passionate about? David:              Well, thanks for inviting me on, Joe.  I’m a medical oncologist with a special interest in GU cancers.  That’s kidney, bladder, prostate and testicular cancers.  I trained and obviously did a medical degree and then I did physician training, specialising in medical oncology.  I actually went off and did a higher degree, actually, in colon cancer, different area.  Still, learnt some skills about clinical trials and at the moment, I’ve got a mixed practice.  I do roughly half private work, the other half public, working at Monash and I also spend a little bit of time at the university, as well, and I do a lot of clinical trials.  My passion is probably looking at new treatments for cancers, trying to push the field forward and improve on where we are now. Joe:                 Fantastic.  What are some of the developments that are happening right now? David:              Well, I think the biggest development that most people would say of this decade is the immune therapies.  The immune therapies, they give us huge possibilities and we’ve seen amazing results in cancers, like, melanomas.  Like most things, they provide big challenges, as well, so there’s that potential to have amazing responses, and we’re seeing really nice responses in kidney cancers and in bladder cancers.  The toxicity is hard to manage.  We’re dealing with a whole load of new toxicities.  This is a whole new way of treating cancer.  It’s completely different to chemotherapy and to other treatments that we currently use. Joe:                 If we think about opinions on cancer, and you mentioned the result is the different treatments and they’ve got new research coming out, in your experience, what are the most common misconceptions that people have around cancer? David:              I think the most common misconception is that it’s always preventable.  A lot of people seem to come with a little sense of guilt, like, what have I done?  What did I do wrong to get the cancer?  Often, actually, in nearly all cases there’s no blame for a cancer.  Some things you can do can increase the risk of cancer, for example, if you smoke, you’re going to increase the risk of certain cancers.  A lot of cancers just come through pure bad luck.  I think some people find that hard to deal with because it seems very unfair. Joe:                 What about DNA and in terms of hereditary cancer, is there anything on that front, do you think, that people should be concerned about? David:              Not so much concerned about but I think we’re going to see huge changes in that area.  I don’t now over which time period, I assume within the next one to two decades.  The biggest thing we’ve seen is in the area of prostate cancer, where it turns out that maybe one in ten men diagnosed with prostate cancer have an underlying problem with DNA repair.  That was a finding that was really unexpected.  What’s made that possible, or that result possible is the fact that we are much better able to interrogate DNA now, looking for mutations.  The first DNA repair defect was called BRCA-1.  B-R-C-A.  It stands for breast cancer, BRCA-1.  Soon after that, came BRCA-2.  Up until pretty recently, it cost you a couple of thousand dollars to test for one of those mutations.  Then really within a few years, we can now test for 14 mutations at a cost of about $600. Joe:                 That’s amazing. David:              I think it’s a bit like computing.  As we see the ability, or the power of computers increase, at the same time, the cost goes down.  We’re seeing the same sort of phenomenon with some of these DNA testing techniques.  I don’t think it’s beyond the realm that DNA testing is going to become a lot more common.  It might be common for everyone.  Everyone might be tested.  From that, we might be able to design a better risk profile.  Rather than trying to screen everyone for a particular cancer, we might be able to group people a little better and say, “What you need more intensive screening for prostate cancer, whereas, you might not.” Again, that’s going to provide a whole load of challenges, as well.  You’re walking around knowing that you might have some sort of genetic defect.  There’s always that downside as well as the positive. Joe:                 Yes, because I guess it weighs heavy on your mind. David:              Yes, you’ve got to get life insurance.  At the moment, we have genetic counsellors who have to talk to people about things like that.  If we find a gene, you’ve got to disclose that to a life insurance company.  You can’t just pretend you don’t know, you have to actually tell them.  Them what’s the law around, are they allowed to discriminate against you based on that?  If you’ve got a certain gene, can they refuse to offer you insurance?  There are all of these factors and issues that need to be thought about before doing this sort of testing.  I think it’s going to change a lot.  I think that’ll be one area where, even cancers now, where when we say, “Look, there’s no genetic link…” I’m not sure that ten/twenty years from now, as we test more and more genes, we don’t start to find some of these links. Joe:                 Of course.  You’ve talked about immunotherapy and in terms of other areas, what are some of the biggest changes that are happening in the medical world, in the world of all the senses, supporting oncology?  What are some of the biggest changes that are happening in terms of dealing with cancer? David:              I think the big thing now is that the pharmaceutical companies are better able to design drugs.  The biggest change we’ve had this century, probably pre-2000, say, was that the way to discover a drug was to dig around and discover a chemical and then try and find a use for that chemical.  A lot of those chemotherapy drugs are really natural type products.  They’re isolated from bacteria or leaves or certain organisms, and they’ve been modified by the companies, but a lot of those chemotherapy agents were naturally occurring substances to begin with.  Whereas, now, it’s changed, what the whole thing is done in a completely different way. Which is probably more rational, which is to try and understand what drives the cancer and then find out which protein, what’s the defect?  What’s pushing this cancer along?  Then asking a pharmaceutical company to design a drug to block that particular protein.  We’ve seen that, we’ve seen designer drugs, like a drug called Enzalutamide, for example, in prostate cancer.  They knew that they needed to block something called the androgen receptor, which is where testosterone signals, in prostate cancer and drives the cancer.  They designed a drug to block that cancer better than it had every been blocked before.  That drug makes a huge difference in prostate cancer. Joe:                 It’s fascinating the research that you do.  Researchers, like yourself, work closely with pharmaceutical companies, is that what happens? David:              Yes, a lot of what we do are clinical trials.  Now, some of those are designed and funding by pharmaceutical companies.  Some of them are funded by clinicians with the support of companies.  We do both.  I’m also a member of an Australian trial group, ANSUP, which is an Australian trials group, which will do both.  Which will help design non-pharma studies.  There’s a testicular study, looking at how to deal with the anxiety of the diagnosis, which is completely non-pharma.  There are also large prostate studies that are run through a trial group like that, it’s an independent group.  At the same time, pharmaceutical companies will approach the hospitals directly and then will run pharmaceutical trials, as well.  the advantage of that, though, is that we can give, or we can gain access to new drugs for patients before they’re approved. Joe:                 Yes, that’s fantastic.  Speaking on the mental side of cancer, you obviously deal with many patients who are facing cancer right now, what do you think are the biggest challenges for someone who has just found out they’ve got cancer?  Who is facing the diagnosis?  What are they going through, in terms of their everyday life? David:              I sometimes think you could answer this better than me, because you’ve been there. Joe:                 Absolutely. David:              From my point of view, I think you’ve got to deal with the psychological effects.  I think you’ve got to be aware that a cancer diagnosis is like a death in the family.  It’s going to have the same psychological fallout.  You’re going to go through those stages of grief.  It takes time to deal with it.  I think some people just need time to come to terms with what’s going on.  Then the next thing is health.  Then, you know, the therapies we use are toxic therapies.  How do you maintain your health dealing with the side-effects of what we do to your body to treat your cancer? I think that’s a challenge, as well.  With those toxic therapies, there’s obviously the challenge of work.  How do you work through this?  Then the other aspect would be your relationships with your partner, your children, while you’re going through all of this stress, how do you make time to work on your relationships and make sure you’ve got that support around you, as well?  It’s a big challenge. Joe:                 Absolutely.  Do you think that most people are open about having those challenges?  Do they talk to their friends?  Do they talk to their family?  Are they open to talking about cancer and how it just plays on your mind and everything to do with that? David:              I think it’s improving.  I think the work done by the prostate cancer foundation of Australia and Movember, I think have improved things.  I think initially women and men dealt with cancers quite differently.  I think breast cancer, people really did talk about breast cancer all of the time.  Yet, we had prostate cancer, which is a similar number of people diagnosed, similar effect on people’s health.  It wasn’t really talked about as much.  I think that has been a difference between men and women.  I think it’s improving.  I think that men feel they can talk about this stuff a little bit more.  I think people vary a lot.  Some people really are very private, they’re very worried about the outward signs of being diagnosed. Give chemotherapy and you lose your hair, that tells everyone what’s going on.  Some people, that’s a big problem.  Especially people that are working or they’re in management roles, that can be hard.  Some people just don’t want to deal with the hassle of telling everyone they know.  if you don’t have any hair, then you’re going to get questions, people are going to say, “What’s going on?” Some people don’t want to deal with that, they find that difficult.  Most people I see, they seem pretty open with their partners.  If they come in with their partners, they are normally pretty open with them.  Sometimes, the intimacy stuff and other things, I think some people find really difficult. Joe:                 Yes, absolutely.  What about survivorships, because I guess it’s a very different reality?  I know that getting regular check-ups, especially when you get closer to the appointment and you’re doing your tests, and you’re thinking, and you’re worried about whether the cancer is going to come back.  Do you think that presents a completely different challenge for people, as well? David:              Yes, and a lot of research has been done into survivorship.  How to live post-diagnosis and treatment of cancer?  It’s well-known that’s it’s hugely stressful.  I probably didn’t realise that when I first started.  Chatting about the weather and stuff with a testicular cancer patient, who’s waiting for their results isn’t a good idea.  I think it’s sometimes the awareness on behalf of the doctor, that how stressful it actually is.  You’re normally opening with, it’s fine, the tests are fine.  Just having that awareness that people really are – it’s obviously going to provoke a lot of anxiety.  There are huge implications based upon one little line of a test result.  It’s normal, it seems to improve with time.  ANSUP did do a study looking at anxiety levels in testicular cancer patients, after they’ve had treatment and when they were being followed.  You did see those anxiety levels improve. Joe:                 Yes, absolutely.  Yes, because cancer is tough to deal with mentally because you’re constantly between your treatments or you’re waiting for results and word from your specialist.  Do you think it’s okay for people to just get angry, get frustrated, get pissed off, because they don’t know how to deal with it all, mentally?  I guess, how can you turn that around to be more positive? David:              I think so, I think – I’m not a psychologist – but I think that most experts will say that you actually need to experience emotions.  I don’t think you can try to be relentlessly positive when you’re not feeling positive, I don’t think’s going to work.  I know there’s always that image of the positive person fighting the cancer with their boxing gloves on. Joe:                 It’s not real. David:              I don’t think the reality is like that at all.  I don’t think people die of cancers because they didn’t fight hard enough, or they weren’t positive enough.  I think a lot of this is out of our control, the clinicians, as well as the patients.  I think sometimes despite the fact that everything’s done properly, the cancer doesn’t respond to the treatment the way we would have hoped.  I think these emotions are all normal.  I think that emotions have to be experienced.  I suppose it’s just knowing that there’s a lot of support out there, if required.  If you are feeling angry or frustrated, that’s okay.  if you’re really feeling depressed and really concerned that these emotions are becoming too much, or something that you can’t handle, that there’s a whole support network out there. The Cancer Counsel is a good start.  They can get you to talk with people who have been through cancer treatments and cancer diagnosis and just talking to someone that’s been through it can be helpful.  Or, you may need professional help.  Psychologists can talk about mindfulness and other techniques to deal with these strong feelings.  Occasionally, some people need the anti-depressants and other medications if they really become depressed because of the strain. Joe:                 Yes, you mentioned stereotypes.  That’s definitely still there, but hopefully that’s changing.  The stereotypes, like you mentioned, about fighting the cancer, or that people who are survivors, they’re portrayed as heroes.  I guess some of those stereotypes are changing, aren’t they? David:              Yes.  I don’t know, I think it’s probably like that a lot in life.  I think that there are things that we can control and then there are things that are just completely beyond your control.  I think that if you’ve been diagnosed with cancer, you’ve got control over some of it.  You can keep fit and you can try and eat well and get enough sleep, everything that you’ve been advised to do.  You can turn up to the hospital if you get a fever, like you’ve been asked.  You’ve got control over those things, but there are other aspects where you don’t have any control over it.  Yes, I think some people seem to really portray – I don’t like that.  I’m not sure I’m thrilled with that fighting cancer with the boxing gloves-type analogy.  I just don’t think it’s like that, because the connotation then is that if you die from cancer, you just didn’t fight hard enough.  It’s just not true. Joe:                 It’s not fair. David:              It’s not fair, it’s not true and there’s guilt involved, as well.  The people that I’ve seen who have died of cancer, it’s not through lack of will. Joe:                 Absolutely.  Is there anything that you recommend for someone to stay in good shape, mentally, physically, what would someone do? David:              Look, I think exercise is really important.  Especially people who are going through chemotherapy, or hormone therapies for the cancers, it seems to really help the fatigue.  We’re lucky enough to have experts now who can design or tailor exercise programs for people with cancer.  They’re called exercise physiologists and they’re university trained, and they also often have done further degrees or further training with cancer.  I’ve seen amazing results, especially with men who are having hormone therapy for prostate cancer, for example.  I’ve seen huge differences in how people feel, just by attending regular exercise.  There’s even some evidence that maybe it’s got an effect on the cancer.  It’s too early to say, but there are a few downsides.  It seems like a very positive thing that people can do, and it’s something where you feel like you’re doing something positive. Joe:                 Yes.  You definitely have given me advice to do daily walks.  I have to say, it’s been fantastic for me during chemo, and I’ve keep this habit up until now.  I hope I keep doing it.  It’s really helped me, even when my head was in a fog and I was just feeling really crap.  I still would go, and do it and it made me feel better.  Definitely, I can’t say enough good things about it. David:              Well, I think it’s also go mental effects, as well, maybe you don’t feel the same as me, but if you do some exercise, that’s often when you go through things in your head and just doing that, I seem to get rid of feelings of anxiety and frustration and other things by doing something physical.  I think it’s got mental effects, as well, I’m sure it has. Joe:                 I can’t believe, looking at you, Dave, I can’t believe that you have anxiety.  We’ve talked about that you’ve seen a lot of people who are battling cancer, is there something that people tend to overlook, something that could help them deal with it better? David:              Yes, we talked a bit about that it’s not a fight and being out of control, some things you can control, some things you can’t.  I suppose the other aspect is just being aware of anxiety, being aware of what it is.  It’s not obvious sometimes.  Through people that you’ve met, anxiety comes out in different ways.  People express anxiety in different ways.  I suppose it’s just being aware of anxiety and what you’re like when you’re anxious.  Do you sweat?  Does your heartrate go up?  Do you shout at people?  Calling it what it is, and if it’s anxiety, looking at ways to manage that.  Obviously, cancer treatment, cancer diagnosis is a huge source of anxiety.  I think managing that anxiety is incredibly important and can often be overlooked. Joe:                 I guess what really helped me was really talking to my wife, talking to my family, talking to my friends about it.  It wasn’t easy at first but as I started to open up and talk about being angry or scared, I realised that it’s okay and it really helped me to deal with it myself.  If that makes sense? David:              Yes, it seems to be, I don’t know why, if you name an emotion, it seems to help.  If you can actually work out what the emotion is, “I’m anxious”, it actually seems to help because you’re like, “Is that what it is?” That’s something, obviously, as a psychologist, my wife’s a psychologist, so she knows a lot more about it than I do.  That’s something that psychologists are very good with this mindfulness that they talk about.  It’s just that ability to recognise feelings and thoughts and let them out.  Not try and bottle them up, not try and supress them or fight them. Joe:                 Has there been any research done that you know of in terms of mindfulness and cancer? David:              Not that I know of, I’m sure that there has, not that I know of.   I know there’s been research done into trauma, other types of trauma, so war veterans and other groups.  I’m sure that they’ll be similar types of trauma experience by people who have been through medical diagnosis and medical treatment.  I know that there are mindfulness techniques that are shown to be very effective in those groups. Joe:                 Yes, that’s really interesting.  That’s something that’s definitely worth looking into.  I guess with anxiety, if sometimes people feel that they want to get a second opinion, do you think that they should do that to seek advice of someone else?  If so, what is the best way to go about it? David:              I think you can always ask for a second opinion, if you want.  Most medical oncologists in Australia, anyway, are very well-trained.  You should be getting pretty consistent messages across different groups.  It’d be interesting to ask whether or not your case had been discussed in a multi-disciplinary meeting.  That means that each case is put in front of a panel, so a number of medical oncologists, surgeons, radiation oncologists, the radiology is check, the pathology is checked.  Most large, definitely large teaching hospitals, large private hospitals, will have meetings like this, where each case is discussed.  I think that’s probably useful to know whether that’s happened.  Then you know that your doctor already has got the opinion of a panel. If that hasn’t happened in a smaller hospital or it hasn’t happened, I don’t think most doctors would be too upset with you saying, “Look, I would just like to ask for a second opinion” and I’d be upfront about it.  It’s not a massive community, obviously.  We all know each other.  Most doctors I don’t think will be particularly upset, if you said, “Look, I’d just like to get a second opinion, just to check.” You should be getting consistency across the two.  That’s what you want to get.  You don’t want to get a radically different second opinion.  Otherwise, you’re left saying, “Well, what’s going on here?” The idea of getting one is that you get the second doctor to say exactly the same as the first.  You go, “Great.  Okay.  This is the right treatment.” Joe:                 Yes, because I’ve that, in terms of other communities that perhaps people are not exploring enough, for online communities, I’ve seen people who frequently show up and put up a topic that says, “I’m scared that I may not be getting the right answers.  Who can I talk to?” I’ve definitely seen online that some people have those concerns.  It’s great that the people can ask for that second opinion and just know that they can get it confirmed and they don’t have to worry about it.  Absolutely.  If someone wanted to reach out and get in touch with the services that you provide, or just wanted to get help, what would you recommend? David:              I think the first step would be the cancer counsel, you know, there are cancer counsels in each state.  They’ve got an excellent website and they’ve normally got links to a whole load of different resources.  There are also some disease-specific groups.  If you have prostate cancer, for example, the prostate cancer foundation of Australia is on Movember.  Movember now is also starting to provide support for men with testicular cancer.  Kidney cancer, looking at kidney health Australia.  Yes, there are a number of places where you can seek help.  Obviously, your treating doctor through the hospital should have access to psychology, dietitians, exercise, physiology.  All of these should be available through most health services, as well. Joe:                 Cool, fantastic.  Thank you so much for your time today.  It was a real pleasure. David:              Pleasure.  Thank you very much.