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Desmoid Tumor and another surgery...

christymcf
christymcf CSN Member Posts: 1
edited March 2014 in Sarcoma #1
I am 37 years old and I am facing my third surgery in 18 months,for reoccuring desmoid tumors. I had the first one removed from my abdominal wall along with partial ribs, and the second time I had 2 areas removed, one on my hip and one close to my kidney - Now it is coming back on my hip and growning into my pelvic area. They will probably take part of my hip bone this time and maybe part of my colon. I already had 6 weeks of raditation and now they don't want to treat me after the surgery. Does anyone have any experience with Desmoids... I am very scared it will grow back and cause greater harm!
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  • rah
    rah CSN Member Posts: 1
    #2
    desmoid
    I had a large desmoid in my left axilla area and chest. I had surgery to have it removed and it grow back very aggressivly. I think surgery spreads the positive cells and grows back. I live in Illinois and close to Fermi lab in Batavia, IL and went through neutron radation, four times sronger than proton. It reduced it to almost nothing. I would recomend you looking into this. The radation was not easy though.
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