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DiscussionI'm newly diagnosed . . .small bowel NET at the ileocecal valve
Neuroendocrine Tumors (NETs) | Last Active: Aug 11 6:59pm | Replies (43)Comment receiving replies
Replies to "@taly No apologies necessary. You were just sharing. I know exactly where you are coming from...."
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@tomrennie The scan went fine. Staff at Mayo are the best.
I was blown away by the results. Moderate uptake for the tumor at the ileocecal valve, where this was all first discovered. No uptake anywhere else. I could NOT believe it. After well over a year of the diarrhea, and other symptoms too. Were they all a coincidence? Or is it functioning there all by itself? I don't know. I will be getting Chromogranin A and 5-HIP whatever urine (confusing it with HiPAA) soon.
I realize this doesn't mean there aren't tiny tumors too small to show on the PET. And that staging probably won't occur until after surgery. And that I haven't heard from the doctor yet (in a week I meet with the surgical oncologist).
Still, I feel incredibly, ridiculously fortunate at this point in time. I wish very good fortune for all of you, too, in whatever way that might present itself!