Talk IBC

In this episode, Terry Lynn Arnold, sits down with both Dr. Wendy Woodworth and Dr. Azadeh Nasrazadani.

Sarah Norton is a 32 year old mother who is living with Stage IV Inflammatory Breast Cancer for almost two years. She will share her journey, including the importance of advocating for proper care, raising young children in treatment, and strategies to balance planning for legacy work while remaining hopeful of maintaining her No Evidence of Disease status for a long time.  

In our latest podcast, Terry Arnold sits down with Dr. Wendy Woodward of MD Anderson, and Jennifer Heckert, IBC sister and IBC Network Foundation Board Member, to discuss the newly established medical code for inflammatory breast cancer—what it means for tracking patients, and the critical steps we need to take next. 

In this powerful episode, Terry Arnold sits down with Ashley Kinni as she shares her deeply personal story of becoming a first-time mom at 32—only to be diagnosed with Stage 3b Inflammatory Breast Cancer just one week later. Ashley opens up about the challenges of navigating new motherhood while undergoing chemotherapy, radiation, surgery, and ongoing post-surgical treatments. Her journey is still unfolding, but her resilience shines through: thankful for yesterday, grateful for today, and hopeful for tomorrow. Ashley Kinni, is a mother, wife, and pediatric speech language pathologist. A lover of cooking, cycling, and spending time with family.

Katy shared her personal journey with HER2-positive inflammatory breast cancer, including her treatment experiences and decision to pursue a chest tattoo instead of reconstruction. Through a discussion with Terry, they explored the impact of cancer on their identities and the challenges of balancing treatment with maintaining a sense of self. Both women discussed their experiences as cancer survivors and advocates, emphasizing the importance of creativity, self-compassion, and seeking support through resources like the IBC Network Foundation.About Katy:Katy Bowser Hutson is a writer and songwriter in Nashville, TN. She is the author of Now I Lay Me Down to Fight which chronicles her time with inflammatory breast cancer in poetry and essays. She is currently writing about play. Katy is married to Kenny and has a fourteen year old daughter and an eleven year old son. 

Dr. Nasrazadani (Dr. Ozy) shared her career journey from biochemistry to clinical oncology at MD Anderson, where she focuses on inflammatory breast cancer research and treatment. Terry and Dr. Ozy discussed the challenges of academic research, including financial struggles and the need to balance clinical obligations with research efforts. They explored the progress and future directions in IBC research, emphasizing the importance of patient involvement in studies and advocacy initiatives, including the MD Anderson Boot Walk.

Jane and Terry shared their experiences with inflammatory breast cancer, discussing their diagnoses, treatments, and the support they received during their journeys. They explored the physical and emotional challenges of cancer, including body image issues and the importance of self-advocacy and community support. The conversation also touched on organizations that provide support for breast cancer survivors and the importance of sharing both hopeful and difficult stories to help others in the IBC community.

Dr. Naoto discusses the challenges related to cancer health disparities and ongoing research into inflammatory breast cancer. The conversation covered funding uncertainties, including potential budget cuts and the changing landscape of biomedical research funding, as well as the importance of storytelling and community engagement in advocating for research. The discussion also touched on the potential of artificial intelligence in medical processes and the critical role of mixed funding sources in advancing academic research.

Julia shares her personal journey of being diagnosed with inflammatory breast cancer at age 32 while working as a travel nurse, detailing her treatment process over four years and eventual transition to patient advocacy work. She discussed her challenges returning to work after cancer treatment and her experience as a school nurse, highlighting the difficulties of balancing health and demanding professional responsibilities. Julia emphasized the importance of patient advocacy and participation in clinical trials, sharing her journey into advocacy work and her ongoing efforts to raise awareness and support others with similar experiences.

Dr. Bora Lim and Josh Newby discussing their work in inflammatory breast cancer research, the challenges of securing funding for rare diseases, and the importance of patient involvement in academic centers. They also discuss the evolution of breast cancer treatment and research, the need for seed funding for rare diseases, and the importance of collaboration and adaptability in advancing cancer research and care.

Terry Arnold and Rachel Ford discuss Rachel being diagnosed at age 37 with inflammatory breast cancer, and not getting the standard of care treatment.

John's daughter was misdiagnosed, then eventually diagnosed with inflammatory breast cancer. He has since wrote a guest bill called Marnie's Law for Legislature in Massachusetts which is now before the 194th Congress. The law states that inflammatory breast cancer shall become a part of the education component for all undergraduate nursing programs in the Commonwealth of Massachusetts.

Christine is an IBC sister who brought this approach of understanding the benefits of lymphatic massage to our attention. Chelsey Jean is a sports therapist, naturopathic practitioner, free thinker and creator of the Advanced Natural Health Clinic and the Chelsey Jean label.

Terry speaks with Dr. Daniel Stover, an Associate Professor of Internal Medicine in the Division of Medical Oncology and Department of Biomedical Informatics at Ohio State University Comprehensive Cancer Center.  They discuss new research and the processes for inflammatory breast cancer. 

In this episode, Dr. Kelsey Corrigan, who works in the lab with Dr. Wendy Woodward at  MD Anderson in Houston, TX, discusses how they are recruiting metastatic inflammatory breast cancer patients or survivors and their caregivers to complete a brief 5-minute survey assessing patient and caregiver perception of the disease and treatment options as well as preferences regarding treatment options.

Dr. Wendy Woodward is the Executive Director of the MD Anderson Cancer Center Inflammatory Breast Cancer Clinic and Program. Here she discusses inflammatory breast cancer and the need for dedicated centers and networking with other specialty centers.

In this episode of TalkIBC we are discussing lymphedema with certified specialist Dr. Marc Miller.

Ivy was diagnosed as Stage 3B IBC in November 2021. After 5 months of Doxorubicin+AC and Taksol, Double Mastectomy (have gene mutation called PALB2), and 30 radiation sessions, she is NED since August 2022. Professionally, Ivy is a chemist providing consulting in the chemistry and biology field to the U.S. Government. She lives in Maryland with her husband and 7 year old twin girls. 

Description of DiscussionSISU- A Finnish concept of strength of will, determination, perseverance, and acting rationally in the face of adversity. Sisu is not momentary courage, but the ability to sustain that courage. How has Robin applied sisu through the course of her IBC treatment from 2016 to recent developments of brain metastatic activity and stepping into whole brain radiation while still living with inflammatory breast cancer with quality of life and hope. BioMeet Robin Matrai, from Calgary, Alberta Canada, whose YES attitude may inspire you, cause you to scratch your head or call you to action. Her perspective of living a life with joy, grit and sisu, despite a double diagnosis of Lupus (1996) and Metastatic Inflammatory Breast Cancer (2016) has not stopped her from successfully parenting, operating her own company, painting, travelling, mentoring, speaking, writing, competing in fitness competitions and so much more.

Martha Van Dam, MS, LMHC, NCC tells her story of inflammatory breast cancer and offers advice based on her experience and her education as a licensed therapist.

Dr. Ueno gives a candid interview with Terry Arnold about leaving MD Anderson and the future of his research and team. 

In this episode of TalkIBC Terry Arnold sits down for a conversation with Nina Surden who was diagnosed with inflammatory breast cancer in 1996, making her currently a 26+ years survivor. She retired as a public school teacher after 35+ years in elementary and middle school teaching in 2009.  She lives in the Philly area, calls herself a fair weather Philly fan, loves to summer at the Jersey Shore and winter in Florida.   She is deeply committed to her synagogue and is an avid volunteer there. She also loves to read and play Maj Jong.   

Diane's daughter, Lindsay Thul,  was diagnosed with Inflammatory Breast Cancer at the young age of 28. She died just 10 short months later. She was was strong, brave, funny & fun, a loving daughter, sister, niece, cousin, granddaughter, auntie, and loyal friend.In this podcast, Diane tells the story of her daughter's diagnosis with inflammatory breast cancer and how it inspired her to start Lindsay's Legacy Fund to help provide financial assistance to families with financial issues get prompt, expert medical attention required to diagnose and treat IBC.

Terry interviews Drew DeMaree who will be hosting the Unicorn Ball as a fundraiser in honor of his wife Kimberley DeMaree who passed away from inflammatory breast cancer in 2022. Kimberely was only 42 years old.  This is her story.Event proceeds will go to The IBC Network Foundation and the Virginia Breast Cancer Foundation. 

Breast Medical Oncologist, MD AndersonExecutive Director of IBC Program

This is Terry Arnold's story, in her own words, of the struggle to get a correct diagnosis through founding the non-profit The IBC Network Foundation.