Living with Metastatic Solitary Fibrous Tumor

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 appointment
• Why he’s turned his experience into advocacy for patients with rare cancers
• Building a “patient brand” to improve communication with care teams
• The creation of the Solitary Fibrous Tumor Foundation to unite patients, clinicians, and researchers worldwide

This 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.