I'm newly diagnosed . . .

Hi, everyone. I was diagnosed on July 17 with small bowel NET at the ilealcecal valve. I had been having GI trouble for well over a year and someone encouraged me to get a colonoscopy, where it was found, biopsied, and labeled a well-defined Grade 1, Ki-67 <3%.

I have been accepted at Mayo Phx and will be traveling there for my Dotatate PET/CT on 8/6. I will see my surgeon oncologist, Dr. Wasif, for the sugery consult on 8/14.

Thank you, @tomrennie , for welcoming me so far. I'm wondering if my PET results will be on the portal and would that usually be within a day or two?

My cardiologist, who has started a workup on me, believes the NET may be functioning, as do I with many symptoms. From what I've read, if that's true it has likely spread to the liver.

I understand small bowel NETS in particular spread very early and easily, even at Grade 1, though perhaps only to the lymph nodes (and possibly not at all). In my case it seems likely more than that. Most of my reading/research has been on PubMed, but also places like Mayo, Cleveland Clinic, Stanford, etc.

Thank you all for sharing your experience, strength and hope on here!