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!