Myxofibrosarcoma: What treatments did you have?

@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

I 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!

@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.

Welcome, @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.

What treatment was recommended for the lungs?

Hi everyone. My 56 yr old husband has been diagnosed with a high grade, 8 cm, fast growing myxofibrosarcoma located at the bottom of his neck, on upper shoulder abutting the brachial plexus. We just completed visits with Vanderbilt team and are meeting with MD Anderson team 1-3 Dec. After much research, chemo does not seem to work on this type of dense tumor. Husband is strongly leaning towards starting radiation then surgery. Does anyone else have/had this type of tumor and location? I would love to hear from you. Thanks

I would follow the doctor's advice. I had a large sarcoma tumor removed from the thigh and the result is that the cancer was removed, but then a month later they found a tumor in hip area and lung.

@kl0409
I wish you the best possible outcome - I know this is scary - I did find that Mayo - All Drs etc were extremely helpful and walked me through the whole situation and that really helped