LMC #44 | Living with Metastatic Solitary Fibrous Tumor with Steve McBee | Living with Metastatic Cancer Series

Steve McBee was on top of the world—literally—logging hundred-mile ultramarathons, running a successful marketing firm, and living life at full tilt. Then, a chance MRI after a minor accident revealed a tumor deep in his left temporal lobe.What followed was a series of surgeries, proton beam radiation, and 15 years of clean scans. Until, in 2021—just two days after standing on the podium at a three-day ultra—Steve learned his rare cancer had returned and spread to his pancreas, thigh, and liver.In this candid conversation with Dr. Peter Crane, Steve opens up about:The shock of moving from “cancer-free” to metastatic in a single appointmentWhy he’s turned his experience into advocacy for patients with rare cancersBuilding a “patient brand” to improve communication with care teamsThe creation of the Solitary Fibrous Tumor Foundation to unite patients, clinicians, and researchers worldwideThis is more than a story about a rare disease. It’s about refusing to be defined by it, finding purpose in the middle of uncertainty, and creating the community you wish you had when you started.Highlights include:Running a hundred miles days before a life-changing diagnosisTurning a rare, isolating condition into a connected global communityHow to prepare for medical appointments like a pro—even when you’re the patientLessons from 19 years of navigating a disease with no known cureWhy collaboration between patients and doctors is the future of rare disease careAbout the Guest:Steve McBee is a lifelong endurance athlete, entrepreneur, and rare cancer advocate. Diagnosed in 2006 with a then little-known tumor (hemangiopericytoma, now classified as Solitary Fibrous Tumor), he has undergone multiple complex surgeries—including brain, pancreatic, thigh, and liver resections—plus systemic therapy.Today, Steve is the driving force behind the Solitary Fibrous Tumor Foundation, a patient- and supporter-led nonprofit dedicated to:Connecting the global SFT communityBuilding a clinical registry and natural history studyDriving collaborative researchAdvocating for better treatments and awarenessWhen he’s not walking 5–10 miles a day in recovery, Steve is mentoring patients, building advocacy tools, and reminding the medical community that patients can—and should—help lead the way.🌐 Learn more: sftcommunity.com/newsletter💼 Connect on LinkedIn: linkedin.com/in/stevemcbeeTop 3 Key Takeaways:Build your patient brand. Clearly communicate who you are, what you value, and how you prefer to work with your medical team.Connection is treatment. Rare diseases demand collaboration—between patients, doctors, and researchers—across borders.Do hard things on purpose. Voluntarily facing challenges prepares you for life’s involuntary ones.About the Host:Dr. Peter Crane is a board-certified physician, educator, and storyteller with a heart for service and a calling to spotlight doctors who make a difference—in their communities, in medicine, and in the lives they touch.Through Doctors Making a Difference, he brings you into intimate conversations with physicians who have overcome challenges, redefined success, and found purpose in and beyond the clinic. His goal is simple: to help more doctors stay in medicine by showing them what's possible.About the Show:Doctors Making a Difference is more than a podcast—it’s a movement to highlight the good, the gritty, and the deeply human side of medicine.In every episode, Dr. Peter Crane interviews physicians whose stories defy the script. From burnout recovery to bold career pivots, health challenges to quiet leadership, this show honors the truth that healing begins with connection—and doctors, too, deserve to be whole.Visit: doctorsmakingadifference.com The Doctors Making a Difference Podcast is for informational purposes only and does not substitute for medical, legal, or professional advice. Always consult appropriate experts regarding your unique circumstances. Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.