Hello @deb1955 and welcome to the NETs discussion on Mayo Clinic Connect. I am glad that you found the video helpful. Are you having symptoms of Carcinoid Syndrome now?

I can certainly understand your confusion about the information you are getting. Understanding cancer is difficult enough, but when you are dealing with a rare cancer, like NETs, it becomes even more difficult.

While I've had three surgeries for NETs, mine have not been in the pancreas, but we do have several members who may be able to share their experiences with you. They would include @kim1965 (his wife recently had surgery for NETs and he is most helpful in responding to others about her experience), also @rockchick, @smt, @outlawcancer, and @ahtaylor.

What type of scans and other diagnostic tests have you had for NETs? Have you had any treatments yet, such as surgery, monthly injections, PRRT, etc.?