@rose2522
The frustration and second guessing is difficult. My husband's 1st tumor was found in 1995 between the illieum and bowell. 28 years later (2022), he was rediagnosed as Stage 4 with tumors throughout his body. I would echo the previous comments about being sure that you see a NETS specialist. We go to Rochester Mayo and have been very satisfied with his care. He has a lanriotide injection every 28 days with minimal side effects and leads a normal life. However, the mind games can be tough! We have also been happy to use Connect. It confirms that everyone with NETS walks an individual journey! Good luck to you!