In early December, I was diagnosed with a synovial sarcoma in my mediastinum (the area between the lungs). Sarcomas in general make up less than 1% of all adult cancers with synovial sarcomas accounting for roughly 0.05% to 0.1% of all cancers. Because our family doesn’t half-ass anything, most synovial sarcomas present in the extremities with tumors in the central body areas (like the mediastinum) being considered exceptionally rare with most doctors never encountering a case like mine in their careers.

It sounds bad but there is a lot to how this story unfolded that matters. For starters, the mass was found entirely by accident. After losing my dad unexpectedly to a heart attack in 2024, I had a baseline cardiology workup. A calcium score test showed my heart was perfect but revealed a 3cm mass. Most cases in the central body have a poor prognosis because the mass can grow to be exceptionally large before it is discovered. Fortunately, mine was found incredibly early at a really small size (which is why doctors were comfortable not adding a systemic approach to treatment, this meant no chemo and a much better starting point).

It also matters that we live in an area of the country where access to top medical care is not in short supply. Given that we are dealing with not just a rare cancer but a rare version of a rare cancer, we knew we needed Memorial Sloan Kettering. I had a thoracotomy on January 26 to remove the mass. Because it was located where my airway split to the left and right bronchi, we were unable to get clear margins (which wasn’t unexpected). Luckily, due to the proximity of vital organs, I was approved for proton therapy at New York Proton Center in Harlem and begin 30-33 sessions of radiation in the coming weeks to kill off any cells potentially left behind. The teams at MSK have been nothing short of extraordinary and initial impressions of NYPC are the same. Experience matters. Always find your people. You will know when you’re in the best and most capable hands.

I am not sharing for sympathy, more as a way to control some of the narrative as things inevitably circulate. I went into surgery in the best shape of my life and stubbornly worked out until the last possible day to prove to myself that I could. I was back in the gym ten days following surgery to walk the treadmill and I am now back to lifting, doing cardio and boxing again eight weeks post-surgery. Somewhere along the way, movement became less about fitness and more about reassurance. If I could still move, push myself and feel strong – then I was okay.

If nothing else, the lessons learned are to stay on top of those routine checkups, buy the concert tickets, love your people unapologetically and support those advocating for medical research and funding. Our experiences always humble us in how quickly everything can change and how much the people around you matter when it does. 

There’s still more road ahead but we are ready for it.

Thanks to the Race to Cure Sarcoma events, SFA has funded over 200 grants in 12 countries leading to close to 200 total publications, adding to the sarcoma research discourse. This has led to $26 million+ in additional funding, 10+ clinical trials with 5 additional pending, and 2 patents. Your investment in the RTCS events, is an investment in saving lives.