Myxofibrosarcoma: What treatments did you have?
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.
I am recovering after my surgery on Nov. 09. I will be seeing my Oncologist for his opinion on way forward once Biopsy report is available.
Take care....
I had a large sarcoma cancer removed back in 2021. I am not totally sure of what kind of sarcoma it was. I get very few answers from the medical professionals. They don’t volunteer anything. It seemed to start from a dog bite I had over 10 years ago. It went as deep as my tendon but they didn’t have to cut into my thigh tendon to remove it. It left a gaping hole and they used a wound vac to close it up. I feel it’s still healing. My relatives out of state who 2 studied to become nurses I was told to drink lots of water as that is how it will heal. The doctors I have been seeing never told me that. They also didn’t put me on any antibiotics afterwards and while it was healing. They also didn’t refer me to physical therapy afterwards. I referred myself to physical therapy when I felt up to it. I have another growth growing on my upper nose by my eye. I’m told that one is Basel Cell Skin Cancer.
I had my surgery for Myxofibrosarcoma was on Thursday November 09. The tumor was surrounded by muscles and tissues, approximate size of the removed part was 10cm x 10 cm. They have sent it for biopsy. I am meeting the Doctor this Friday and may come to know more about the tumor.
I was discharged on Sunday and am back home. The Doctor's advise was to need a normal life (keep walking, do small exercises, normal diet, etc.). One thing I was advised not to do is to raise the left arm, which had the tumor removed, high. However there was specific exercise for left arm to avoid frozen shoulder. I am taking pain killers, antibiotics and anti-nausea tablets, along with two multivitamin tablets. There is very little pain at the moment.
By the grace of God everything went well.
I can share any other information I have....
I am sharing what what was removed in the surgery.
Take care...
I also have myxofibrosarcoma.
Mine is in my right lower calf.
I too had surgery and during surgery had brachytherapy. Then 6 weeks later had more radiation. Now do ct and mri regularly to ck for re-occuranc.
My prayers are with you for your upcoming surgery.
If you have any questions please feel free to reach out.
🙏🙏🙏
Those are all good questions to ask during your appointment on Thursday, @enver. I look forward to hearing what information you get during your appointment. I hope you will post an update.
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....
Hi @lgshoaf, might Mayo Clinic in Rochester be an option for you?
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...
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.
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.