When you’re diagnosed with a cancer so rare there’s barely any research, you can wait for answers—or help create them. In this deeply personal episode of Doctors Making a Difference, host Dr. Peter Crane and guest Steve McBee share something few people in the world experience: living with metastatic Solitary Fibrous Tumor (SFT). Steve takes us through his 19-year journey—brain surgeries, pancreatic and liver resections, ultramarathons, and now leading the charge to unite the global SFT community through the Solitary Fibrous Tumor Foundation. Learn more about SFT Foundation: https://sftcommunity.com/newsletter Connect with Steve: https://www.linkedin.com/in/stevemcbee Timestamps: 00:00 – Introduction: Peter’s own metastatic SFT diagnosis 01:34 – Steve’s first symptoms after a 100-mile ultramarathon 03:45 – The MRI that changed everything 05:21 – Surgeries, proton beam radiation, and years of clean scans 07:05 – Metastatic diagnosis in 2021 after another ultramarathon 08:08 – Pancreatic tumor discovery and Whipple surgery 09:35 – Additional surgeries: thigh tumor and liver resection 11:13 – Understanding just how rare SFT really is 13:14 – Why Steve became an advocate for the SFT community 14:18 – Building the Solitary Fibrous Tumor Foundation 20:28 – The “patient brand” approach to medical appointments 25:11 – Advice for doctors treating rare cancer patients 30:23 – Advice for patients navigating rare disease care 34:12 – The power of connection in rare disease communities 36:48 – The “we effort” of building a foundation 38:06 – Advances in cancer treatment and hope for the future 40:46 – Finding resilience: doing hard things on purpose 44:00 – Closing thoughts and resources #SolitaryFibrousTumor #RareCancer #SFTFoundation #CancerSurvivor #PatientAdvocacy #DoctorsMakingADifference #SoftTissueSarcoma #RareDiseaseAwareness