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Myxofibrosarcoma: What treatments did you have?

Sarcoma | Last Active: Jan 12 8:38am | Replies (74)

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So sorry to hear about your myxofibrosarcoma diagnosis My myxofibrosarcoma was in my right lower calf. Started out size of a marble and grew to size of a plum. Took 1 1/2 years to diagnose.they didn't think it was anything serious. MRI could not diagnose anything. When in for a different surgery there they found the mass in Sept 2020. Sent to pathologist in Sacramento but they couldn't diagnose it had to be sent to pathologist in Boston. Diagnosed high grade myxofibrosarcoma. Second surgery at UCSF Dec 2020 after margins came back clean during surgery had brachytherapy which is radiation directly in open wound then had plastic surgeon do a skin graft to cover the large hole. Then 5 nights hospital. Had full lower leg boot on had to wear 24 hrs a day for one month and change bandages daily. Said had to go to rehab for month and i said no I'm going home. Had to prove I could hop to bathroom on my own with walker. Thank goodness I work out. Then went home had to be bed bound for 1 month because too many muscles in the calf and the skin graft would never have healed. After month slowly started walking with walker then cane for months. Had to do additional radiation another 6 1/2 weeks. Started 2 months after 2nd surgery. The worse thing for a skin graft is radiaion. The skin graft looked liked raw meat but has to complete the 6 1/2 weeks. Very painful.
Then had to back to plastic surgeon to try to save skin graft. Took months.Then started physical therapy. Some days still need a walking stick. But I walk every day 2 1/2 miles.
Pain every day, nights are the worst. But I have my leg I didn't know if I was coming out of surgery with my leg.
If it comes back in my calf I have a 25% chance of saving my calf. So far I have had good news every 6mo.when I do my MRI and my cts every 3 month have all been good news .
Very grateful and thankful.
Prays and good wishes for all of you.

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Replies to "So sorry to hear about your myxofibrosarcoma diagnosis My myxofibrosarcoma was in my right lower calf...."

Hope you continue to do well. I agree I am thankful & grateful to have my leg too. I was not dx’d with a myxofibrosarcoma. I’m
still waiting to hear more details about the sarcoma I was dx’d with. I’m on a 6 year causal study with a local hospitals Red Cap team. Some of my other cousins in the N.E. (1 is a Nurse) advised me to drink more water as that is how this surgery heals.