Myxofibrosarcoma: What treatments did you have?

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)

Hello 4Me, thank you for your reply. I had a high grade tumor which was located on the left lateral chest wall right under the arm pit. I completed 2 surgeries they removed tumor and some of the latissimus muscle. I am currently going through a 6 weeks radiation treatments at this time.
I also heard the chemo is usually not as a treatment with this type of sarcoma but my oncologist stated they would also like to treat it with chemo. Searching for anyone else being treated chemo as a option.

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?

Jonezzi, I believe that @marshelle had chemotherapy for myxofibrosarcoma that had metastasized to the lungs. Do I have that right @marshelle?

@jonezzi, has your sarcoma remain localized?

Hello 4Me, thank you for your reply. I had a high grade tumor which was located on the left lateral chest wall right under the arm pit. I completed 2 surgeries they removed tumor and some of the latissimus muscle. I am currently going through a 6 weeks radiation treatments at this time.
I also heard the chemo is usually not as a treatment with this type of sarcoma but my oncologist stated they would also like to treat it with chemo. Searching for anyone else being treated chemo as a option.

Hi Jonezzi
I also was diagnosed with Myxofibrosarcoma high grade tumor in my right lower calf.
I have had 2 surgeries.
During the 2nd surgery I also had radiation on my leg before the plastic surgeon did my skin graft.
Then I had an additional 6 weeks of radiation.
Which played havoc on my skin graft.
But happy to say that is done and my skin graft has healed. I was told chemo did not work on Myxofibrosarcoma by UCSF Stanford and UCD.
I have had 4 opinions.
Where was your tumor located.
It is very difficult to find someone with our cancer.
Looking forward to hearing from you.
4Me

Welcome @4me. I hope you don't mind, but I moved your post about being diagnosed with myxofibrosarcoma to this new discussion that @jonezzi started just 2 days ago:
- Myxofibrosarcoma https://connect.mayoclinic.org/discussion/myxofibrosarcoma/

Jonezzi, will appreciate meeting someone else with this rare cancer.

I’m hoping the back pain is from him sleeping in a not so comfortable position in a recliner. A couple Tylenol takes the pain away. I know I should have called the oncologist but don’t want to be over reacting.
I hate that I always think the worst.

Welcome, @marshelle. Oh yes, I believe @jonezzi and @4me, who also have experience with myxofibrosarcoma, know about feeling any ache or pain and the worry that it may be the cancer returning. It's a common fear among all cancer patients. @hopeful33250 has had her cancer return three times. I can imagine you and your husband are worried and the next 2 weeks will feel long.

Back pain of course can be caused by a thousand different things from exercise, raking leaves or even from immobility and not moving. Has your husband done anything new (or been inactive) that might cause back pain? Is it new?

Have you considered calling to let your oncologist know about the pain? She/He may wish to investigate or expand the order for the CT scan to include the back.