I'd add that it's pretty important to see an oncologist who is familiar with GIST... not all are. If there's a sarcoma center near (or even far) from you, go there.
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BarbarainBham posted an update
Molly72, I don't want to offend you, but if you still haven't had follow-up after your GIST surgery, you need to get your records and go to an oncologist as soon as you can. You should have had a CT scan every 3 months for the first year, and possibly gone on Gleevec. Your tumor should have been tested for several things in the lab. I delayed taking my Gleevec, and my June CT scan showed another GIST tumor as big as the first in a different location by my liver, plus swelled lymph nodes. I've taken the Gleevec since then and am now waiting on the next CT scan to see if it helped. If yours was small, you are probably OK, but you need to be thorough, because a GIST is serious if it spreads. I knew my first tumor had positive margins, but didn't know it would come back so quickly. Lifespan with GIST can be short, so don't take it lightly. I've obviously learned my lesson.
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BarbarainBham
over 7 years agoPerry, that's so true. I've read that GISTIs so rare that they recommend people go to a doctor at a school of medicine because of the research and the large number of patients they see. Even the pathologists who examine the tumor need to have seen many GIST cases to do the report they do about cell division, etc. Doctors at schools of medicine are doctors who are good enough to teach other doctors and would be in trouble if they did the things she says her doctor did. They have a lot of people to answer to if they do bad things, which is comforting to patients!
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