Myxofibrosarcoma: What treatments did you have?

Posted by jonezzi @jonezzi, Sep 24, 2022

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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Profile picture for marshelle @marshelle

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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@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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Profile picture for tenacgal @tenacgal

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

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@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?

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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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Profile picture for marshelle @marshelle

My husband had brachytherapy immediately following his first surgery. It’s a very localized radiation. He had it twice a day for 5 days.

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@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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Profile picture for 4me @4me

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

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@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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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!

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Profile picture for funkynotes @funkynotes

Has anyone out there had a sarcoma cancer? I am just wondering.

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Profile picture for funkynotes @funkynotes

Has anyone out there had a sarcoma cancer? I am just wondering.

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@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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Profile picture for tenacgal @tenacgal

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

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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?

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Nothing as it is growing fast. They give me 3 months to live.

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