Myxofibrosarcoma: What treatments did you have?

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?

Have you ever heard of Imerman Angels they try to connect people with rare cancers with someone with your cancer.
They search all over the world.

Hi @4me,

My NETs were found incidentally. A test to look at something else revealed the lesion. Before my third surgery, I found Mayo Connect Prior to that it was hard to find information or support.

Actually, I've adjusted to the eating plan. I simply eat smaller, more frequent meals now. I've gotten used to it.

Mayo Connect is my main support group.

Thank you for sharing your journey. I am sorry to hear what you have had to endure.
That must be so difficult everytime you go to eat and the trouble you go through.
I have never heard of your cancer either.
There are just far too many rare cancers
I am so sorry you have to continue to go through more surgeries.
How did you find out about your cancer?
When where you diagnosed?
Have you found anyone else with your cancer?
Do you belong to a support group?

I've had three surgeries of the upper digestive tract for a rare form of cancer, neuroendocrine tumors (carcinoid type). However, I've not required other treatments, just the surgeries. It certainly has compromised the amount I can eat and affects the digestive process, however, all in all it hasn't been too bad.

It is a slow growing cancer, so the surgeries have been over a 13-year range of time.

Do you have any leg discomfort now?

What is your cancer journey?

What a remarkable story, @4me. You advocated for yourself, got second opinions and followed your instincts. When dealing with rare diagnoses, it is so important to keep searching like you did.

So how are you feeling now? Do you still need to have regular follow up tests?

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.
Radiologist
Plastic Surgeon
Oncologist
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 .

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?