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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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kjm70 | @kjm70 | Nov 30, 2025

What treatment was recommended for the lungs?

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tenacgal | @tenacgal | Nov 27, 2025

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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kenc | @kenc | Nov 21, 2025

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.

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jkrause3 | @jkrause3 | Nov 20, 2025
In reply to @kl0409 "@jkrause3 thank you for your response. I am glad your recovery is going well. If my..." + (show)
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@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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@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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kl0409 | @kl0409 | Nov 19, 2025

While 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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kl0409 | @kl0409 | Nov 19, 2025
In reply to @jkrause3 "@kl0409 I was seen within 1 week and from there Mayo setup with the Surgeon, Oncologist,..." + (show)
Profile picture for jkrause3 @jkrause3

@kl0409 I was seen within 1 week and from there Mayo setup with the Surgeon, Oncologist, Radiologist , plastic Surgeon and also Physical Therapy
My tumor was quite large it weighted close to 5 lbs. - I did 25 Pronto Radiation Treatments - was enrolled in a clinical trial for pre surgery Physical Therapy concentrate on overall body strength - balance, and training me to use one leg for a period of time this was extremely helpful as I felt I could participate in my own recovery - after the radiation I had to wait 3 weeks for surgery - very important to keep the area well hydrated - I used a radiation therapy lotion daily which really helped - I had to most skin damage after the radiation was completed - but it amounted to mostly a sunburn - Because of the size of the tumor it was anticipated that I would need to have a skin flap taken from my thigh to cover the surgical area - I was really lucky there the size of the tumor had acted like a skin ex pander and so the Flap was not needed. Surgery was 9 hours with I night in Intensive care - I spent 4 nights in the hospital but daily I got up non weight bearing as worked with the PT team with a walker - I used a wheelchair and walker for 6 weeks and then received a Boot cast for walking and began PT - I progressed out of the Boot cast in 2 weeks and was able to walk unassisted - Biggest issue was incision healing where the radiation was concentrated - I was given Medical Bee Honey for the area and that worked really well -
Key is to do your exercises and to move as much as possible It made all the difference in my recovery - I still has a lot of numbness in the leg and my foot but I attend workouts 3 times a week and walk daily
Hope this helps

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@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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kenc | @kenc | Nov 17, 2025

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.

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jkrause3 | @jkrause3 | Nov 16, 2025
In reply to @cherylkolson "@colleenyoung She has an appointment tomorrow in LaCrosse. I believe it is a consultation with radiologist..." + (show)
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@colleenyoung
She has an appointment tomorrow in LaCrosse. I believe it is a consultation with radiologist oncologist. Hopefully they schedule radiation treatments immediately.🙏 Gundersen is already consulting with Mayo in Rochester

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@cherylkolson

Ask about Proton Radiation - it targets the tumor and is far less invasive on healthy tissue
Also I had inter operative radiation during surgery while the leg was open to get an minute particles - all of my post surgery margins were clear of cancer

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jkrause3 | @jkrause3 | Nov 16, 2025
In reply to @cherylkolson "@kenc This tumor is 20.1cm x 9.9cm x8.7cm and growing. We don't know what all the..." + (show)
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@kenc
This tumor is 20.1cm x 9.9cm x8.7cm and growing. We don't know what all the letters and numbers mean but it's T4 NO MO stage IIIb I pray she doesn't lose her leg!

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@cherylkolson

I highly recommend Dr. Goulding at Mayo she saved my leg and I have full use of it
my tumor was over 5 lbs in my calf and I lost a lot of muscle but she was able to save enough to give me mobility

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jkrause3 | @jkrause3 | Nov 16, 2025

Also to note I DID NOT have Chemo as the ONcologist stated for the sarcoma it was not effective

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