Hi there, fist off.. fellow Wisconsinite.....GoPackGo. back to the NETS. My hubs was diagnosed back in 2019 with it originating in the small intestine and having metastastisized to the liver. I shared his story a few months ago, if you're interested. Finding an Oncologist who preferably specializes in NETS is best. They are Hematology Oncologists. His team is primarily his surgical Oncologist who oddly enough specializes in NETS as was as looping in with his Cardiologist and primary care Dr. We were very fortunate to have them both "drop in our lap" by a simple trip to the ER for what we thought was needed was a GI cocktail for a bleeding ulcer. Turned out he had a blockage and needed emergency surgery. The surgeon on call was his now surgical Oncologist who specializes in NETS. Go figure. We were so fortunate to have a dr who knew what it was before he even did the surgery. All while we were in shock and oblivious to everything around us.

As to some"tools for that toolbox".
1. Find an Oncologist who specializes in NETS. 2. Educate yourself. Read about Neoendrocrine carcinoid tumors. 3. Write down your questions to ask the Dr. And continue to research and ask questions going forward. 4. This is important: Of all the cancers you can get this is probably one if the best ones to have. Meaning, it's generally a slow growing cancer... even if at stage 4. (I say generally to CYA and bc each case is different). My hubs Dr told him...."you won't die FROM cancer but WITH cancer". So let that ease your mind a bit. The biggest thing is knowing how NETS grow and spread and the treatment options. And don't be afraid to ask why your not being treated say the recommended way. Maybe the Dr isn't well versed on NETS... maybe it's your overall health that he's chosen that treatment route. And definitely if you get "that feeling" of "this Dr just doesn't seem to... get it or ... whatever" get a second opinion. My hubs is on his 3rd Oncologist. The first just bc of location but the 2nd he just felt like the Dr just wasn't up on the latest treatment nor did he care to look at other options when my hubs asked about them. You've got a lot to take in but with knowledge at least you know what you're up against. Take a deep breathe... it'll be ok. Good luck and keep us posted on your progress.