Hello @djchambers and welcome to the NETs support group on Mayo Connect. As you are probably aware, NETs are a rare form of cancer, and it is always a good plan to have a consultation with a NET specialist. NET specialists can provide you with the best guidance, especially as you begin treatment. Mayo Clinic has NET specialist at all three of their locations. If you would like to get a consultation (either in-person or virtual) here is a link to appointment information, http://mayocl.in/1mtmR63. In addition, I'm also including a list of NET specialists worldwide, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/. I do see a specialist listed in Lexington, KY.

We have another discussion group that might be helpful to you,?
Should I See a NET specialist?
https://connect.mayoclinic.org/discussion/should-i-see-i-net-specialist/?commentsorder=newest#chv4-comment-stream-header. I would also like to invite @californiazebra to this discussion.

As this is your first post, could you share a bit about your diagnosis? Were you having symptoms that led to the endoscopy where the pancreatic NET was found? Are you having any blood sugar problems?

If at all possible, I would say yes. NETs are relatively rare and treatments are making great strides. I am very thankful for a specialist who is immersed in caring for NET patients. Best Wishes for you!

I’m so sorry you have to go through this. My husband was diagnosed with a PNET 15 years ago so I certainly empathize with you. I definitely think that it’s important that you see a NET specialist. This cancer doesn’t behave as your typical cancer and a general gastro oncologist may not have the knowledge that’s needed to determine the proper tests, treatments and sequencing of treatments. Even when seeing a specialist, it’s also important to educate yourself as much as possible about this disease. I’ve found it so helpful to understand this disease and the treatment options as then I feel more confident in any decisions we make. I’ve also been in situations (even with a net specialist) where what was being told to us didn’t make sense given what (little) we knew so we sought out another specialist which drastically changed my husbands prognosis for the better. A couple of good places to start to learn about things is http://www.NETRF.org. Like the other excellent site that was recommended, you can find a specialist and support groups near you as well as links to helpful information to start learning about this disease. Another great resource is http://www.netcancerawareness.org Lots of great informational videos from conferences. Lastly, take a deep breath. This will likely be a marathon and not a sprint as usually this is a slow growing disease that often can be treated as a chronic illness. My husband is proof of this. Best of luck to you!

Thank goodness the others have given you the best advice. If I had not persisted in seeing a NET specialist, my first oncologist (who only told me I had stage 4 cancer) would have begun chemo. I’m happy to say I only take lanreotide injections monthly and have minimal disruption of my normal life. My NET specialist told me I would most likely die with, but not of my NeuroEndocrine cancer! Hang in there & Merry Christmas! 🎄🎁

Thanks to you and the others who replied. I can provide a little more information. About a year ago I had an abnormal result from an A1c test. My PCP at the time asked if I ate a lot of sweets, drank, sodas, etc. The answer is no. I eat a very healthy diet and have celiac disease. Nevertheless, I tried eating more raw vegetables and high fiber. Then I started with rectal bleeding. I had an endoscopy and colonoscopy. The endoscopy showed erosive gastritis.