He was diagnosed in December 2019, had surgery in March 2020, I think the first six month scan was fine but the next one showed growth, he is on Octreotide monthly injections, had Lutathera treatment, which did not help, was on clinical trial, which had severe side effects. Was on chemo, but had some issues with that. He has lost a ton of weight and is skin and bones. He has had issues with walking and joint pain. He is not able to work. Prior to diagnosis, he was extremely healthy and active, in very good shape. Now he looks like he's going downhill fast. Meanwhile, when I look at any sites, most people are like you - fine after decades sometimes. I have gone to support groups and with the exception of one person, who was undergoing chemo, everyone looks fine, they are all working full-time and seem to have normal lives. Yes, they have had various treatments, but I have never seen anyone who looks like my brother. Now it could be that people who are very sick do not go to those meetings. My brother does not and I don't even know if he would be able to sit in one of those meetings if he tried. He had some kind of breakdown in April - we don't know what caused it - drugs, anxiety, etc. - but since then, he has not gone back to normal. He cannot focus or concentrate at all. Can't watch TV, text, email, and can barely talk on the phone. It's very upsetting. I don't know if in his case, it just advanced quickly. It had already metastasized to the liver at diagnosis, but was Grade 2. They suggested surgery as he was in such good shape. He had no symptoms until he had the surgery - no diarrhea (he has small intestine primary) until after the surgery. He had some pain in his side and the liver lesions were picked up on a CT scan. But it seems that from surgery on, he's been going downhill. I think everyone else I have heard of has had good results with PRRT (lutathera) but he did not.