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Myxofibrosarcoma: What treatments did you have?

Sarcoma | Last Active: Dec 10, 2025 | Replies (139)

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@jkrause3 I'm sorry about your diagnosis. How long did it take for you to get in and be treated? I hope you are doing well.

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Replies to "@jkrause3 I'm sorry about your diagnosis. How long did it take for you to get in..."

@kl0409 I was seen within 1 week and from there Mayo setup with the Surgeon, Oncologist, Radiologist , plastic Surgeon and also Physical Therapy
My tumor was quite large it weighted close to 5 lbs. - I did 25 Pronto Radiation Treatments - was enrolled in a clinical trial for pre surgery Physical Therapy concentrate on overall body strength - balance, and training me to use one leg for a period of time this was extremely helpful as I felt I could participate in my own recovery - after the radiation I had to wait 3 weeks for surgery - very important to keep the area well hydrated - I used a radiation therapy lotion daily which really helped - I had to most skin damage after the radiation was completed - but it amounted to mostly a sunburn - Because of the size of the tumor it was anticipated that I would need to have a skin flap taken from my thigh to cover the surgical area - I was really lucky there the size of the tumor had acted like a skin ex pander and so the Flap was not needed. Surgery was 9 hours with I night in Intensive care - I spent 4 nights in the hospital but daily I got up non weight bearing as worked with the PT team with a walker - I used a wheelchair and walker for 6 weeks and then received a Boot cast for walking and began PT - I progressed out of the Boot cast in 2 weeks and was able to walk unassisted - Biggest issue was incision healing where the radiation was concentrated - I was given Medical Bee Honey for the area and that worked really well -
Key is to do your exercises and to move as much as possible It made all the difference in my recovery - I still has a lot of numbness in the leg and my foot but I attend workouts 3 times a week and walk daily
Hope this helps