Hello @mimisayhi and welcome to the NETs support group on Mayo Connect. I see that many of our members have already shared their experiences with you. It really helps to feel connected with others who have travelled what seems like a lonely road. I joined Connect prior to my third surgery for NETs in the duodenal bulb. That was in 2016. As my first surgery was in 2003, I'm now a 20-year NETs survivor. My first two surgeries were invasive open surgeries; however, my last surgery was done at a university medical center where it was done through an endoscopic procedure.

As it was mentioned by another member, NETs can be a slow growing cancer for many of us. Surgery usually is the first treatment needed. After that, depending on your symptoms, other treatments can be added such as monthly injections to control symptoms related to carcinoid syndrome such as flushing and diarrhea. There are also great chemotherapy treatments available to NETs patients if there is metastasis, such as PRRT.

Most of us who have been diagnosed with NETs had no symptoms, the NETs were diagnosed during an exam for something else. Was this your experience as well or were you having symptoms that led to this diagnosis?