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)

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

Yes. My husband’s mass was in the elbow and axillary lymph node then nodules popped up in lungs.

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.

Thank You

Hello @marshelle,

I understand what you mean by, "I should have called the oncologist but don’t want to be overreacting." Any diagnosis of cancer puts you on "high-alert" to any new pain or change, doesn't it?

Communication is so important. You need not worry about overreacting, though, as oncology offices are well prepared for the anxiety that comes with cancer. As @colleenyoung said the information about the back pain might help them to decide on a follow up to look at what's going on. It's always good to communicate any new symptoms.

I do hope that your husband's pain is just a result of a new sleeping position and that it doesn't represent anything serious. Will you give the doctor's office a call or a notify them on the patient portal just to make them aware of this new pain?

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.

Has anyone dealt with myxofibrosarcoma in the elbow? Hubby's tiny bump was originally diagnosed as bursitis. After postponing "bursitis" surgery due to DVT, mass had grown and fungated. Ortho doc finally realized no bursitis and did biopsy. Huge mass removal, brachytherapy (radiation twice a day x 5 days), wound vac, then took skin from leg and graft for flap to close. By then axillary lymph node affected and several small lung nodules. Chemo x 5 and all but one stable, rest of lung nodules gone. 3 months later lymph node still enlarged. Back to surgery to removed 12 nodes, only one was cancerous. All healed. Go back in 2 weeks for CT but for a couple weeks he's mentioned back pain. As I'm sure everyone knows, any ache or pain makes you shiver. Anyone have recurrence of MFS other than first origin?