Hello @rushlakekathy and welcome to the NET discussion on Mayo Clinic Connect. I am glad that you found this forum, it is a great help to connect with others who are also dealing with this rare type of cancer. I'm sure you will find encouragement and support.

I have had three surgeries (over a 20-year period) for NETs in the upper digestive tract, specifically in the duodenal bulb. I have had no symptoms, and these were found during an upper endoscopy. I now have endoscopies every other year. It has been about six years since my last surgery.

My treatment involves following up with endoscopies, having blood drawn to check for serotonin levels as well as liver/pancreas functioning and MRIs of the liver and pancreas. I have cysts in the pancreas and lesions on the liver, but they have remained unchanged over several years.

Have you experienced carcinoid syndrome (symptoms are often facial flushing and/or diarrhea)? Also, what are your doctor's recommendations for follow-up?