Myxofibrosarcoma: What treatments did you have?

What is your cancer journey?

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?

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?

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.

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.

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?

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.

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.

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?

Thank You