Connect
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Sarcoma Support Group.
Connect
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?
-
Like -
Helpful -
Hug
1 Reaction@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!
@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
-
Like -
Helpful -
Hug
2 Reactions@cherylkolson I had a large sarcoma in my left thigh. The surgery was quite extensive in that the cancerous muscle was removed and replaced with a thigh muscle from my right leg. The shortly thereafter a small tumor was spotted in my left hip, which was surgically removed. My mobility has been deteriorating ever since. I have now reenrolled in in-home PT. and hoping that helps. Also, I can't understand why there is so much time between the time the cancer is diagnosed and the treatments to follow.
-
Like -
Helpful -
Hug
1 Reaction@cherylkolson, sorry to hear about your sister. When will she start treatment? What treatment is planned?
-
Like -
Helpful -
Hug
1 ReactionHow large was the tumor? My sister has a very large sarcoma in her right thigh.
It has taken forever to start treatment. She has increased swelling and pain.
@nmd78, has your adult child's oncology team suggested any medication before or during chemo to help with the nausea? How often do they have chemo?
-
Like -
Helpful -
Hug
1 ReactionMy adult child is entering 3rd week of chemo for thigh tumor. Will let you know how it goes. Mostly nausea and sometimes throw up afterwards, then better.
-
Like -
Helpful -
Hug
1 Reactioncrazy stuff - I think the hardest part is that I am in great health otherwise - I eat only organic - use only purely natural products for self and cleaning etc. So really pretty angry that I end up with this.
I can't stress that quality of care from Mayo everyone I have encountered is top notch - Also not knowing how much muscle I will lose is another thing that keeps me up at night - but all of my cancer board is telling me I will make a full recovery with time and hard work - so I keep on keeping on
thanks for reaching out and glad you are back on the mend
-
Like -
Helpful -
Hug
1 ReactionFirst of all I am so happy you feel confident in your medical team which is so important.
I also have myxofibrosarcoma in my right lower calf.
Mine took 1 1/2 years to diagnose. Was finally diagnosed by a vascular surgeon thinking I had AVM ( arterial vein malformation).
Took biopsy Sacramento could not diagnose the biopsy it was the sent
to Boston. Finally diagnosed as Myxofibrosarcoma September 2020.
Had to go to UCSF for 2nd surgery December 2020. I had brachytherapy during surgery (which is radiation put directly into open wound)
I was lucky no flap was able to do skin graft. My first question when I woke up do I still have my calf I did not know if they could save my leg.
So very fortunate for that also.
5 nites hospital no wt bearing wanted me to go to rehab for a month I said no way I work out everyday I'm going home.
Had to be bed bound for one month so skin graft could heal. Too many muscles in calf.
Then 2 months after surgery 6 1/2 weeks of more radiation.
My thoughts and prayers are with you during this difficult journey.
If you need to talk or have questions pls feel free to reach out.🙏🙏🙏