Living with Metastatic Solitary Fibrous Tumor

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

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