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Fibromyxoid Sarcoma

jsd1237
Posts: 1
Joined: Mar 2012

My name's John. I'm 25, and last week I was told that the large lump that has been on my thigh for years is a low grade fibromyxoid sarcoma. What led up to this discovery was a combination of an MRI and an incision biopsy. I've since also had a CT scan on my chest and found that it has not metastasized to my lungs. My surgical oncologist at Franklin Square hospital in Baltimore says the next step is to remove the tumor surgically, along with as much as 2cm of tissue around the lump. Meanwhile, my girlfriend's mother not only works at Johns Hopkins, but went there for her own successful cancer treatment, so they insisted I see the sarcoma specialists at JHH. The head of the sarcoma center there wants me to go through radiation treatments before removing the sarcoma, and left me with the impression that this would mean not removing as much surrounding tissue. I know this type of sarcoma has a high reassurance rate, so radiation may be necessary, and I realize that Johns Hopkins is a top notch medical center, filled with sarcoma specialists, but I'm still worried about the idea of getting radiation. I haven't spoken to the radiologist yet, but I'd love to know what other people's treatment has involved. How successful have treatments been without radiation? What kind of side effects are people experiencing or aware of from radiation? I've read through the posts on this topic, and it seems like a lot of people have been treated with surgery alone, or had surgery first, and then decided if they needed radiation or not.

artistjanb
Posts: 2
Joined: Mar 2014

I noticed your post and am wondering if you check this board from time to time because I do not know whether to do pre-radiation or not. My tumor is also large (left thigh). It is fibromyxoid sarcoma and has been there for years. (also had MRI and icisional biopsy)

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