Myxofibrosarcoma: What treatments did you have?

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.

Hi Jonezzi
I also was diagnosed with Myxofibrosarcoma high grade tumor in my right lower calf.
I have had 2 surgeries.
During the 2nd surgery I also had radiation on my leg before the plastic surgeon did my skin graft.
Then I had an additional 6 weeks of radiation.
Which played havoc on my skin graft.
But happy to say that is done and my skin graft has healed. I was told chemo did not work on Myxofibrosarcoma by UCSF Stanford and UCD.
I have had 4 opinions.
Where was your tumor located.
It is very difficult to find someone with our cancer.
Looking forward to hearing from you.
4Me

I’m so happy to hear that the surgery was successful and that they got all the cancer! I love your positive attitude and I know that is important for us when battling cancer. I have a large Sarcoma on my left thigh and I have completed 25 rounds of radiation like you and I am scheduled for surgery February 17 to have the mass removed. I’ll be honest I’m scared but I have a great support system with my family and friends and my faith and God thank you for sharing your journey and may you know you have helped one scared lady❤️‍🩹🙏❤️

@sallymc, thank goodness you agreed to have the feeding tube. I know people hate the thought of it, but it sounds like it was really necessary in your case. Have you received the results of you followup PET scan yet? How are you doing?

So sorry about your diagnosis. I was diagnosed with Myxofibrosarcoma in back of my thigh after I couldn’t handle the pain. Chiropractor told me I had sciatica. Well the tumor was pushing on my sciatic nerve ! By the time I went to doctor re pain etc I had an mri that diagnosed the tumor as soft tissue sarcoma and biopsy revealed the kind: a high Myxofibrosarcoma 😢. Of course I went home and googled it only to end up thinking I might live months to max of 3 years My tumor was really big 9cm x12cm It was so close to nerve the surgeon had me have 5 weeks of radiation. I promptly totally lost my appetite and everything smelled and tasted different .. and not good ! I just couldn’t eat. Thought it would get better after radiation but it didn’t. I was wasting away literally ! My GP and I decided I had to have a feeding tube so with that I got better enough to have my surgery. Weirdest thing is the night after my operation my appetite , smell and taste all went back to normal !
Anyway , I just had a pet scan to see if the cancer metastasized especially to lungs. My edges were negative but I read it likes to come back I will not have chemo in IV. Would kill me Might do a chemo pill if there is one for this but I’m ready to look for opinions where there has been research or lots of experience . MDAnderson in Texas is one thought. I’m ready to fight and don’t want same ole thing that doesn’t work and just makes you sick. Any experience out there let me know ! Sally c

Hi all,
I wanted to update you since my post on 5/27. I had 25 treatments (5 wx, 5 days a week) and then had 6 wx for the radiation to do its thing. Not fun. On 9/10, my tumor was removed and sent to the lab. 2 days after I received the most incredible news that my surgeon got it all/all negative margins for sarcoma. On 9/16 my plastic surgeon did the flap surgery (differs from a skin graft) which involved taking skin from my thigh and attaching its blood vessels to the blood vessels left in the large hole in my foot. I spent 8 nights in the hospital as they had to check the flap every hour round the clock for 48 hours to make sure it stayed alive. It’s a fascinating procedure that has literally blown my family and friends away. Now I face about a 2 month recovery. I am wheelchair bound and my leg must be elevated and straight out at all times. I’m anxious for my first follow up on Thursday. I’m so fortunate and grateful to my amazing team of doctors and though I have a long road ahead I’m in a very different place emotionally than I was in May when I was first diagnosed. I hope this may help someone that was as terrified as I was when first getting the news. Best to everyone.

Hi all,
I wanted to update you since my post on 5/27. I had 25 treatments (5 wx, 5 days a week) and then had 6 wx for the radiation to do its thing. Not fun. On 9/10, my tumor was removed and sent to the lab. 2 days after I received the most incredible news that my surgeon got it all/all negative margins for sarcoma. On 9/16 my plastic surgeon did the flap surgery (differs from a skin graft) which involved taking skin from my thigh and attaching its blood vessels to the blood vessels left in the large hole in my foot. I spent 8 nights in the hospital as they had to check the flap every hour round the clock for 48 hours to make sure it stayed alive. It’s a fascinating procedure that has literally blown my family and friends away. Now I face about a 2 month recovery. I am wheelchair bound and my leg must be elevated and straight out at all times. I’m anxious for my first follow up on Thursday. I’m so fortunate and grateful to my amazing team of doctors and though I have a long road ahead I’m in a very different place emotionally than I was in May when I was first diagnosed. I hope this may help someone that was as terrified as I was when first getting the news. Best to everyone.