Because PNET's are considered a slow-growing tumor, I feel cast aside or valueless when it comes to this type of tumor. My PNET is on the tail of my pancreas and very hard to see via CT scans. It was originally detected on a endroscopy test. The doctor came into my room almost glowing because things look clear, except the very small growth on the tail of your pancreas. "Don't worry about it, they are usually not-malignant" The test was done at Rochester Mayo. Since that time my physician there has refused to do any CA19-9 tests, saying they really don't tell us much. Has not done another endoscopy to more closely monitor the PNET but did two CT Scans, 6 months apart. He has now changed that to annual CT Scans...no monitoring in-between those 12 months. So, they, "believe" it to be slow growing based off of how it behaves in other areas, yet this is a very rare (1/100,000) cancer. My brother died 7 years ago from Pancreatic Cancer. My sister died 10 years ago due to a malignant brain tumor. So, I have reasons to be a bit on the hesitant side when it is suggested that yearly monitoring will suffice. Mayo is considered, "the gold standard" in healthcare so I guess I shouldn't be questioning its plan of care (or as I believe lack of care).