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Myxofibrosarcoma: What treatments did you have?

Sarcoma | Last Active: Oct 7, 2024 | Replies (104)

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@crystald

I live in central NY. About 35 miles east of Syracuse NY where my team of doctors are. I still get regular CT, MRI and X-rays. Now it is every 4 months soon to be every six months. After two years it will be once a year. The doctor said that the only option I have, aside from doing nothing right now, is drilling on both sides of my ankle to remove the screws. I am going to hold off as long as I can. I am not ready to be laid up for months again. My heart goes out to you as it can’t be easy being a caregiver of two and having your own struggles. I have said that God only gives you what you can deal with. He certainly has given you so much. If you don’t mind me asking some questions. How big was your tumor? Did they have to remove your fibula bone and a muscle? What state are you in? Do you get scans only of your legs and chest area? I have asked about brain scans and the doctor didn’t feel it was necessary. My dad passed from a brain tumor and it does concern me that it could spread to the brain as any cancer can. So I wonder why they wouldn’t scan there, too? Sorry about all the questions. If they are too personal I understand. I hope you have good support system and help. You sound like a very strong person, but is good to accept help when offered.

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Replies to "I live in central NY. About 35 miles east of Syracuse NY where my team of..."

No questions off limits😊
I live in Folsom CA
30 miles from Sacramento
My care since 2nd surgery is UCD
My oncologist is head of lab research for Sarcoma so feel very fortunate.
And she is very young.
I was doing cts of lungs and stomach every 3 month and mri every 4 months for first 3 years. Now do cts and mri every 6mo. for next 2 years. This last year started getting contrast with cts every other 6 mo. because new research has shown to be a more thorough scan. Do you get contrast with your cts?
No x-rays.
Soon as I was diagnosed had a pet scan from top of head to toes.. Since then have had 2 more from head to toe.
So sorry to hear about your father. I definitely see and feel your concerns.

My tumor started size of a boulder marble and grew to a x-large plum in a year and half. Mine was high grade. Did not have to remove any bone. Just muscle, tendons and a couple inches of my Achilles tendon was removed. I was lucky mine is just 2 inches directly above ankle bone. I think that saved me.
I was told chemo would not help me but didn't you have chemo?
Will bone grow over your screws to give you more stability?
Are your x-rays for your feet to ck the screws? Hope you don't mind the questions.