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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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@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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2 Reactions@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!
I don't understand why doctors don't order a full body PET scan. Wouldn't that show all of everything that's going on?
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1 Reaction@jkrause3 I'm sorry about your diagnosis. How long did it take for you to get in and be treated? I hope you are doing well.
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1 Reaction@cherylkolson I agree. That should be something that in standard once someone has certain symptoms.
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1 Reaction@cherylkolson I am sorry to hear this. My mom is currently still having tests run at our local hospital and at first they said surgery but now they need another MRI. I am concerned because of the size of the tumor and location. I am wondering if she needs to get into the Mayo clinic as they have more expertise.
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1 Reaction@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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3 ReactionsAlso to note I DID NOT have Chemo as the ONcologist stated for the sarcoma it was not effective
@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
@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