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Myxofibrosarcoma: What treatments did you have?

Sarcoma | Last Active: 1 day ago | Replies (117)
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@jkrause3

I was diagnosed in November of 2024 - Again a vascular surgeon discovered the lump and sent me to an oncologist at Banner - After Cat Scan and MRI before any biopsy Banner said Chemo and Radiation and then surgery -
I then reached out to Mayo and things took at positive turn - I met with Dr Goulding Surgeon and Dr Ashman Radiologist - Dr. Goulding encouraged me to do the biopsy which showed I had a low to moderate cancer that was totally encapsulated but the size of a soft ball in my right calf - They consulted with the oncologist who agreed that Chemo was not needed or effective for this type of cancer -
I am on my final week for 25 radiation treatments - and I am getting Proton Radiation - so far no damage to my skin although at end of week 4 felt like I had a mild sunburn inside the leg - Advil eased the discomfort and I have been using an all natural Radiation Burn cream from day one -
I was also enrolled in a Physical Therapy trial to see if doing PT prior to surgery will help in the healing and mobility after surgery. It entails walking at least 30 minutes a day plus a full range of exercises to help strengthen my entire body (I am 70 but in good shape no other illnesses and I don't take any other medications) I am working hard on balancing on 1 leg and the ability to rise from a chair or bed onto one leg - I am also practicing with a walker
I will also have to have a flap as I will lose a lot of muscle - I should expect 7 to 10 days in the hospital and the first 5 I will not be allowed out of bed -
The team at Mayo has been incredible - explaining every step of the way - I am scheduled for Surgery on May 5th - and I know I will have a job ahead of me to gain full use of my leg but feel confident with a lot of patience and hard work I can get there.

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Replies to "I was diagnosed in November of 2024 - Again a vascular surgeon discovered the lump and..."
jkrause3 | @jkrause3 | Mar 31 12:16pm

Also I am told I will be fitted with a brace to help with my gait after surgery

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4me | @4me | Mar 31 2:08pm

First of all I am so happy you feel confident in your medical team which is so important.
I also have myxofibrosarcoma in my right lower calf.
Mine took 1 1/2 years to diagnose. Was finally diagnosed by a vascular surgeon thinking I had AVM ( arterial vein malformation).
Took biopsy Sacramento could not diagnose the biopsy it was the sent
to Boston. Finally diagnosed as Myxofibrosarcoma September 2020.
Had to go to UCSF for 2nd surgery December 2020. I had brachytherapy during surgery (which is radiation put directly into open wound)
I was lucky no flap was able to do skin graft. My first question when I woke up do I still have my calf I did not know if they could save my leg.
So very fortunate for that also.
5 nites hospital no wt bearing wanted me to go to rehab for a month I said no way I work out everyday I'm going home.
Had to be bed bound for one month so skin graft could heal. Too many muscles in calf.
Then 2 months after surgery 6 1/2 weeks of more radiation.

My thoughts and prayers are with you during this difficult journey.
If you need to talk or have questions pls feel free to reach out.🙏🙏🙏

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