My Journey with Myxofibrosarcoma: Treatment and Follow-up

So have they ever said it is terminal? I have to find some treatment for the tumors in my ilium and serum bones. I am not sure about pinpoint radiation

Thank you for sharing your myxofibrosarcoma journey and the comprehensive monitoring plan that has kept you on track for eight years. It sounds like you've developed a thorough understanding of what to watch for during your follow-up care, which can be incredibly valuable for others in this community who may be navigating similar paths with soft tissue sarcoma surveillance.

Where was your sarcoma? I had 25 radiation applications last winter with surgery in Feb 2025. 6” of leg quad area removed everything from skin to the bone. Last scans next week taking place every 3 months and then going to 6 months. I’m back to hiking, running and biking but worried about the high reoccurrence. It always feels tight but margins and scans have been good.

Your case gives me hope. It sounds like I have the same diagnosis as you.

Was yours high grade?

Mine was high grade but caught fairly early. Last scans (1 year in now) were all good. Being in my leg vs close to internal organs is also good for me. My rapport with my oncologist is trustworthy, and he tells me what to watch for. One more year of high risk for reoccurrence and then it goes down to medium risk for three years.

Stephen thanks for the response. I haven’t interacted with anyone who has the said condition especially high grade. I am looking to beat my battle and am hopeful after this recent tumor removal, had my first removal last spring to hopefully find some resolution. Obviously clean scans is the desired outcome. Not that you asked but my tumor location was on my wrist. Painful as hell. Anyway here is to continued healing and God Bless!

Wishing you the best outcome for years to come. Keep moving that wrist as much as possible to avoid radiation hardening that limits movement in the radiated area for up to 18 months.

Phil P…..thanks for starting this conversation. You give the rest of us that are just starting this journey hope. Take care.

I too have a myxofibrosarcoma, mine was diagnosed in February of 2025 in the left chest wall. After 25 radiation treatments, I had surgery to remove it September 2, 2025. The margins showed good. Follow up Ct scan in December showed it that reappeared in my right lung lower lobe. I was accepted into a clinical trial of Keytruda and doxorubicin for 6 rounds, then up to 2 years more with the Keytruda. The last scan between rounds 5 and 6 showed the tumor had shrunk 2.1 centimeters, the first time for shrinking. I will be having another scan in a month or so. I have found the side effects on the Keytruda to be milder than the combination. I try to stay optimistic and although it will never be cured, I’m working towards manageable.