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Myxofibrosarcoma: What treatments did you have?

Sarcoma | Last Active: Oct 7 12:35pm | Replies (104)

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@chuck138

I'm 49 and I have a high-grade myxofibrosarcoma. Found it in my thigh around Thanksgiving 2022. Diagnosed in January, and had it removed on Valentine's day, 2023. I am now finishing up 6 weeks of radiation (last dose is on Monday).

They did a ct of my lungs, and they looked clean and were able to get clean margins on surgery. However, the margins were a little narrow in the deep part of my leg, so that's obviously concerning.

Even though this is scary stuff, I feel like many things have gone my way.
1) It hasn't spread (so far)
2) It was in a place where they could get at it (not on the bone, on a nerve, nor on an artery)
3) I am close to a pretty good Cancer Center, that actually has a sarcoma team. They have all coordinated well for you my care.

So far, the worst part has been these last 2 weeks of radiation. I am really tired all the time, and my skin is just a mess. That should all heal up though.

I am a bit worried about the monitoring going forward, but not too much. The way I see it, we have a monitoring plan, so we will deal with it right away if it comes back. Plus, there's nothing I personally can do about it, so I'm not going to shut down with worry. Can't worry about a recurrence away. Just have to get on with things, and deal with it if/when it comes back.

Does anyone else find it funny how, whenever Doctors and Nurses mention sarcomas, they mention how rare it is ?
Are we like, cancer hipsters because we have a cancer you've probably never heard of? 🙂 (I'm kidding of course)

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Replies to "I'm 49 and I have a high-grade myxofibrosarcoma. Found it in my thigh around Thanksgiving 2022...."

Hi
I also have myxofibrosarcoma in right calf.
Took 1 1/2 years to diagnose it.
I've had 2 surgeries and during my 2nd surgery had brachtherapy and 2 months later 6 weeks of radiation.
I agree its a shame that there is so little information and k owledge of sarcoma.

Only 1 % of all cancers are sarcoma and there are over 100 subtypes of sarcoma.
I'm glad you have a good sarcoma team near you.The last 3 weeks of my radiation were tough too I had to have a skin graft after 2nd surgery and you don't want to do that and then have radiation.
My leg was like mush.
But I'm very happy to say it healed and was able to save my skin graft.