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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I was clear of the cancer after the tumor was removed from my leg, but it appeared later in my hip and lungs. I recommend following the procedure the doctor recommends.
@jkrause3 thank you for your response. I am glad your recovery is going well. If my mother's doctor team don't act with more urgency I am going to see about getting her in the Mayo Clinic. I am concerned about the size of the tumor and I know they have to run the tests and do the t MRIs but it seems they are scheduling them too far apart. First they said they wanted surgery done by this week and now they don't know. I pray she can get the treatment she needs either here locally or at the Mayo where the specialize in sarcomas. I pray for your continued healing and a full cancer-free recovery.
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1 ReactionWhile my mom is waiting for the doctors locally to finalize her treatment options (hopefully surgery) she has been in more pain due to the location of the high-grade sarcoma tumor(s) 🙁 Any recommendations on pain management to ask the doctor about? Anything holistic to help her sleep better. I am going to recommend we call the Mayo next week after she checks with her insurance.
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1 Reaction@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
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2 ReactionsI 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.
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
What treatment was recommended for the lungs?
Nothing as it is growing fast. They give me 3 months to live.
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?
@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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