Myxofibrosarcoma: What treatments did you have?

Posted by jonezzi @jonezzi, Sep 24, 2022

I was diagnosed with Myxofibrosarcoma. It was large and a high-grade tumor. I had my surgery and will start my radiation treatment next week. My oncologist also stated that chemotherapy scheduled. My pathology report came back with no evidence on malignancy. Is chemo still necessary. I know it is my decision just needed to get a second opinion.

Interested in more discussions like this? Go to the Sarcoma Support Group.

4me | @4me | Aug 31, 2023

In reply to @michellebanta "My CT and MRI came back clean I am now considered in remission.I’m so happy and..." + (show)

That is great news.😊😊

chuck138 | @chuck138 | Oct 25, 2023

In reply to @4me "My results came back great. How about your results? Did you have your mri on a..." + (show)

Sorry for the absence. My MRI came back clear! So far, so good.
I am struggling with some surgery related complications (not lymphedema, but lots of swelling in leg and hip from surgery) so that's no fun. But I'll take a little swelling over the cancer every day!

Thank you so much for asking about me! I really appreciate it.
I am very happy to hear your results were good, too!

lgshoaf | @lgshoaf | Oct 27, 2023

I just found out I have a myxofibrosarcoma tumor in my left arm. Looking for surgeons to remove the tumor. We live in Boise, Idaho, so would like one in the western US.

enver | @enver | Oct 31, 2023

I am diagnosed with myxofibrosarcoma. Its at the back of the left shoulder. Doctor will tell me their plan to go forward.
I would like to know if someone has been treated for it and myxofibrosarcoma came reoccured. If true than how long was it from the time it was treated that it came back.
Thank you for any information you can provide...

Teresa, Volunteer Mentor | @hopeful33250 | Nov 1, 2023

In reply to @enver "I am diagnosed with myxofibrosarcoma. Its at the back of the left shoulder. Doctor will tell..." + (show)

Hello @enver and welcome to the Mayo Connect Cancer support group. I can understand your concern and I'm glad that you found this forum. We have members like, @chuck138 @michellebanta and @4me who have this diagnosis as well. I hope that they will share their experiences with you.

I can understand you wanting to know about recurrence. Please know, however, that it depends a lot on the staging of the tumor. Have you had surgery or a biopsy yet? Do you know what stage this is?

I look forward to hearing from you again.

chuck138 | @chuck138 | Nov 1, 2023

In reply to @lgshoaf "I just found out I have a myxofibrosarcoma tumor in my left arm. Looking for surgeons..." + (show)

Sorry to hear about your diagnosis. I have it too, and it's definitely a shock to hear you have sarcoma!

You need to look for a sarcoma center. Mayo obviously has one. The Sarcoma Alliance has a list of Sarcoma centers around the country. https://sarcomaalliance.org/sarcoma-centers/
I suggest you start there.

chuck138 | @chuck138 | Nov 1, 2023

In reply to @enver "I am diagnosed with myxofibrosarcoma. Its at the back of the left shoulder. Doctor will tell..." + (show)

I am currently in treatment and being routinely monitored for recurrence. I think everyone is different, so it's hard to provide the info. Be prepared for a surgery, and most likely radiation. I think that's par for the course with sarcoma. The rest, your Doc will talk with you about when they know more about what you specifically have.

enver | @enver | Nov 2, 2023

Thank you for your guidance. Its very helpful.
I met my doctor today. My surgery is planned for coming Thursday. Today I am getting CT Scan. It is to determine if myxofibrosarcom is touching some organ or not. Doctor is hopeful everything will workout fine. I did inquire about subsequent radiation. He said Oncologist will determine way forward.
It is heartening and comforting to be part of such group.
Stay safe...

Colleen Young, Connect Director | @colleenyoung | Nov 3, 2023

In reply to @lgshoaf "I just found out I have a myxofibrosarcoma tumor in my left arm. Looking for surgeons..." + (show)

Hi @lgshoaf, might Mayo Clinic in Rochester be an option for you?

enver | @enver | Nov 5, 2023

My CT Scan showed that the tumor is not touching the ribs, which is good news as surgery is simpler. When I see the surgeon on coming Thursday my question to him would be how soon does the surgery heal and what are the things I need to be careful about for smooth recovery....