Looking back, I had symptoms of severe diarrhea 5 years before diagnosis. Nightime diarrhea including incontinence. Went to GI digestive clinic. Blood tests negative for Celiac, colitis etc. but did have SIBO small intestine bacterial overgrowth. They treated me for that but never did an endoscopy. They told me I had Irritable bowel disease. My symptoms did lessen when I restarted my Omeprazole ( proto pump inhibitor). An ulcer was found in my small intestine (duodenum) during an endoscopy for unrelated reason. I wanted my esophagus checked before I continued on a medication for Osteopenia. Biopsy of ulcer was grade 3 neuroendocrine tumor. I was starting to have pain in my right side, just below rib cage. Right before the endoscopy I had CT scans and a HIDA scan of gallbladder. All negative. (My cancer does not show on CT Scan). MRI and dototate PET scan show Stage 4 metastasis to T-11 spine and small 1 cm or less lesions in my liver too many to count. Oncologist at MHealth Fairview started me on CAPTEM oral chemotherapy. And monthly Octrotide. Some shrinkage in liver after 3 months. Continued for total of 7 rounds when cancer remained the same. After 4 months of no chemo and just injections cancer has remained stable. Consult at Mayo In Rochester determined I have gastrinoma. Thus I need to be on proton pump inhibitor. Mayo would have suggested just injections and not the oral Chemo to start with. My cancer is well differentiated and so far hasn’t been as aggressive as a Grade 3 can be. I have my MRI’s at Mayo and am followed there and M Health Fairview. Hoping for continued stable cancer for as long as possible. Next treatment will probably be PRRT. I was told no surgery.