tbelvin

Hi, Tbelvin!
Everybody is different, but I didn't have any pain after my surgery other than about 2 weeks of soreness from the incisions. In my experience with GIST, the times I had pain indicated a tumor. When I got diagnosed, I had severe back pain and went to the doctor, who ordered a CT scan that day that showed a "mass." When I got the new tumors in June, I had been uncomfortable when I moved a certain way. My doctor told me it's just the tumor pressing on something, but you should tell the doctor anyway so it won't perforate anything, such as intestines, which I understand is a possibility if you get a tumor there.

If they didn't find anything on the CT scan, what did your doctor think your pain was from?

Regarding malignancy, I had read that some GIST tumors are benign and some are malignant, but nobody ever told me either, although mine is obviously malignant since it's spread. I guess you should just ask your oncologist. Be sure to make a list of questions, so you can get them all answered. It's also good to take someone with you to help you listen or take notes for you.

Information I received from the American Cancer Society said to request a copy of each diagnostic report to keep in a file, and you can refer to them for details that I forget between CT scans, such as size, etc.

Good luck! Let us know how you are.

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