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Myxofibrosarcoma: What treatments did you have?

Sarcoma | Last Active: Jun 4 7:56pm | Replies (83)

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Hello @4me

I am so pleased that you came back to share a bit about your journey with Myxofibrosarcoma. It appears that you have regular follow up now. That is great!

I had not heard of having radiation during a surgery. Is this a procedure that is done specifically for Myxofibrosarcoma?

If you are comfortable sharing more, what symptoms led to the diagnosis of Myxofibrosarcoma on your leg?

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Replies to "Hello @4me I am so pleased that you came back to share a bit about your..."

March 2019
I noticed a bump when I was shaving my leg.
It was the size of a boulder marble.
I went to the Dr. and she said you must have bumped your leg and I said I know my body and I didn't bump my leg.
After another appt. they sent me to do a ct to ck for blood clot.
Nothing was found.
So went on with life. Then in Nov 2019 at my Orthopedic appt she did not like the looks of my bump it now had doubled in size. She sent me for a mri of my leg.
But unfortunately nothing was found even though it was a size of a walnut now.
So again went on with life
Then in March 2020 it was now the size of a plum and was very tight and a bit uncomfortable.
So went to a vascular surgeon because it felt like it had a pulse.
The surgeon thought it was a AVM which is when your arteries and viens are all tangled together.
Which is also very rare especially in the leg.
So had surgery Sept 2020.
Went back a week later to get stitches out.
And the Dr. had tears in his eyes and said I am very sorry to tell you that you have a very rare cancer called Myxofibrosarcoma.
The pathologist in Sacramento could not identify the tumor and it was sent off to Boston and was diagnosed as Myxofibrosarcoma.
I feel the vascular surgeon saved my life and am forever grateful to him.
And for his kindness.
He then spent another hr with me getting me a pet scan in 2 days and appt with surgeon later that week.
When you have cancer surgery u really want to take everything out the 1st time and have clean margins.
So I was in desperate need of another surgery.
This surgeon in Sacramento is a very good surgeon but had no experience with Myxofibrosarcoma.
So was referred to UCSF.
Now covid is in full swing.
So all appts were on Zoom.
Met with surgeon.
Plastic Surgeon
Orthopedic oncologist.
2nd surgery was then on Dec. 1 2020.
No one was allowed at the hospital with you so I hired a car to take me from Folsom to San Francisco at 3am. I am a caregiver for my husband and my father so they stayed at home.
Surgery lasted 6 1/2 hrs..
Was in hospital for 5 nites.
First thing I asked when I woke up is my leg still there because they didn't know going in how close tumor was to the bone. So happy to say I have my leg.
They said you need to go to rehab for a month I said absolutely not I work out every day and am strong and going home.
There were no visitors allowed at the hospital so was glad to be going home.
My driver came back and took me home.
1 week later back down to San Francisco to get stitches and my drain out. Thank goodness for my driver.

I had to stay in bed for 30 days because skin grafts do not heal in the calf if you walk on your leg.
So just hopped to the bathroom.
Then March 2021 started 6 weeks of radiation.
You never want to radiate a new skin graft but we had no choice.
They even put a gel bolice a little larger than my scar to make the radiation burn even worse. To make sure we were killing everything.
It turned to just mush.
At 5 1/2 weeks they took the bolice off during radiation because it was just to burnt.
Glad that was over. Soon as radiation ended went to plastic surgeon to try and save my skin graft.
And I am happy to say they were able to save it.
It's a bit beat up but it's there.
If it comes back they said it would be difficult to save my leg.
I am constantly cking my whole leg for a any size of a bump.
Sorry so long .

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