Hello @spartan, I'm glad that you found our discussion group on NETs. When I was first diagnosed in 2003, there was little information and almost no support. All I knew was that I had something "rare." To date, I've had three surgeries for carcinoids in the duodenal bulb. I see that member, @tomewilson has also provided you with some information. I'd also like to direct you to the Carcinoid Foundation website where you can learn more about doctors, support groups, etc. https://www.carcinoid.org/. On their website, you can sign up to receive email newsletters that will keep you informed about the latest research and treatment for NETs.
If you are comfortable doing so, please share a little about how your doctors arrived at this diagnosis. For example;
What kind of symptoms did you have that led your doctor to run tests?
What tests were run to determine that you had NETs? Did it include the 68Ga DOTATATE Positron Emission Tomography (PET) that specifically looks for NETs?
Do you have other health problems as well as the NET?
How are you feeling now?
I look forward to hearing from you. I've found that the more support I have for NETs the better I feel. As one of our Connect Mentors says,