Living with Neuroendocrine NETS, any advice?

Hi I am hearing Nets is different in most. I had surgery in august to remove tumor and half pancreas. I am doing ok up and down with stomach issues. Hope to see new oncologist in a few weeks and get Ct in Feb for followup.
Some symptoms have returned. Just keep good thoughts and look for information. Wish you all the best

@gg66: Hello and glad you are reaching out for advice and information about this world of NETS! This rare form of cancer is even weirder because we all experience it uniquely… our community refers to us as “Zebras” -no two alike! Fortunately we gather together to share our experiences with each other and that allows not only a sounding board, but insight into what roads our individual journey might take. As patients we need to muster determination and persistence as we learn about our disease and best ways to advocate for treatments that may offer us more TIME here. Although we do not have medical training, I am here to help you, as are countless other NET patients to share and listen to your concerns.
Wishing you best health, Bette

Hello @gg66 and welcome to Mayo Connect. I completely understand your wanting to chat with others about your concerns and experiences. When I first came to Connect in 2016, I was facing my third surgery for NETs in the upper digestive tract and really wanted some assurance that others had lived through this experience as well. At this point, I am a 21-year survivor, as my first surgery was in 2003.

With that introduction, would you like to share a little about your experience with NETs? For example, how long ago were you diagnosed; what treatments have you received so far (surgery, monthly injections, etc.)?

Finally, what are your main concerns or questions as you face this diagnosis? As I learn more about your experiences, I will invite other members of our NET support group to share with you.

I look forward to hearing from you!