Myxofibrosarcoma: What treatments did you have?
I was diagnosed with Myxofibrosarcoma. It was large and a high-grade tumor. I had my surgery and will start my radiation treatment next week. My oncologist also stated that chemotherapy scheduled. My pathology report came back with no evidence on malignancy. Is chemo still necessary. I know it is my decision just needed to get a second opinion.
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@marshelle
Thanks for this information.
What did the radiation treatment entail? Did he just spend the whole day in the hospital, then move to the treatment area for treatment? Or was he inpatient the whole time? Or did you go to the hospital twice in a single day, and hang out somewhere between the treatments?
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1 Reaction@tenacgal
My husband also has
myxofibrosarcoma. His is located in the lower extremity. I would love to hear more about what you were advised by Vanderbilt and MD Anderson.
My husband had 26 rounds of radiation and then surgery. He unfortunately had a recurrence 4 years later, followed by 2 more surgeries. He continues to seek a way to stop the recurrences, will be meeting with his med team to discuss options. Would love to hear what others are doing!
What form of treatment did your husband choose?
Hello,
It was actually the oncology radiologists suggestion. He had a massive mass removed from his elbow and the brachytherapy catheters were placed at the same time. He had twice a day radiation for 5 days. That type of therapy is very specific to the area involved. This was in 2021 and as of today he is cancer free.
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2 Reactions@marshelle
Can you share what the decision making process was for brachytherapy vs external beam radiation for your husband's case?
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1 Reaction@4me my husband was diagnosed with Myxofibrosarcoma in 2020. First occurrence resulted with radiation and surgery for treatment. Healing took 4 years, but there wasn’t a recurrence until year 4. The 2nd recurrence was with surgery- no radiation, healed quickly but recurrence only after 4 months. The third recurrence was just recently with surgery and the med team are considering post radiation and looking for options. But I honestly feel there are alternatives and I’m searching and hoping to find something. That’s why I joined this group to see what is working for others.
Thank you for sharing
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2 ReactionsI found a bump on my left arm, went to the doctor, who thought that it was just a cyst of some sort. He sent it out to have it tested for cancer and it came back positive for Stage 4 Myxofibrosarcoma. Had surgery on it again, my Dr went as far as he could, close to the bone testing each layer for cancer, until he removed it all. This was in 2016, did the radiation after, 26 rounds just to be safe 5 years of CT scans on my lungs. So far no reoccurrence. Truly blessed!
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3 Reactions@funkynotes
@funkynotes
Yes I had a fibrosarcoma come up in my lower left calf. I came to Mayo and went thru 25 rounds of radiation to shrink the tumor and then had it surgically removed. That surgery was done in Dec 2021 at Mayo. In August 2025 this monster returned , I went thru surgery again in September 2025. Hoping we got it all this go around, and we had good clear margins. Well it popped its ugly head up again in January, surgery was just done on Feb 23, 2026. I’m now recovering from the last surgery. We are anxiously trying to find a way to prevent the sarcoma from returning again, hopefully with the research ongoing at Mayo we will soon be able to eliminate these recurrences.
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2 ReactionsWelcome, @tenacgal. To hear that your husband has a fast-growing sarcoma must be very frightening and everything around probably feels like it is moving fast and at the same time, frozen in place.
I moved your post to this related discussion:
- Myxofibrosarcoma: What treatments did you have? https://connect.mayoclinic.org/discussion/myxofibrosarcoma/
I did this so you can easily connect with fellow members like @bailey457 @jonezzi @4me @marshelle @chuck138 @michellebanta @lgshoaf @enver @thompta @lac74 @bethysue @verena @ljt61 @bailey457 @crystald @sallymc @jkrause3 @cherylkolson and others who can share their experiences with myxofibrosarcoma.
How did the meetings go at Vanderbilt and MD Anderson? What treatment did your husband decide upon? How are YOU doing?
Nothing as it is growing fast. They give me 3 months to live.