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Anyone have experience with gastrointestinal stromal tumor (GIST)?
Sarcoma | Last Active: 4 days ago | Replies (77)Comment receiving replies
@sharnell, NED (no evidence of disease) since early 2023 is great! But it is near impossible to shake the worry of recurrence. I'm tagging fellow GIST-ers like @ta52 @frygirl777 @cathych58 @smtoby @mermaid7272 to join the discussion again.
How often do you do follow-up appointments? What helps keep the fear of recurrence at bay or is it a constant companion?
Replies to "@sharnell, NED (no evidence of disease) since early 2023 is great! But it is near impossible..."
Yes, I have a constant worry but it hides in a shadow in my brain and pounces every now and then. My gut surgeon said the average life expection is 5 years, especially without Imitinab. I have heard of some people that live much longer in similar. Are they just lucky?
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I guess I would ask how they were able to determine from an autopsy that a recurring fast grow tumor was likely?
My nine-and-a-half hour GIST removal was nearly three years ago. I have a CT scan every three months and so far so good. I guess I would also ask how it got to a point where it was 6 - 7 inches. That seems huge to me.