more info on gasstric NET w/liver mets and progression of symptoms

Welcome Iniemczura to the Mayo online support group for neuroendocrine tumors. I hope you find this will be a place where you can get a lot of support and information that will help you and your husband. I was diagnosed in March 2018 with Stage 4 carcinoid cancer when I had a blockage in my small intestine and had to have emergency surgery. Then in July 2019 I had another blockage in my large intestine. So I've lost 21" of my intestines. There are some other smaller tumors scattered around my body and a somewhat larger one in my stomach that has been deemed "unsafe" to remove. My oncologist at the time started me on Sandostatin LAR injections in April 2018 and I still get one every 28 days. They do take a bit getting used to but over the years the side effects have decreased. He told me I'd be on it the rest of my life (and it's now been 5 years and I just turned 74 so, so far, so good.) There are other treatments his doctor might consider (chemo, PRRT). I had PRRT at Mayo in Phoenix in 2021, finishing in October of that year. First scan was in March 2022 - result was "stable, no new growth" and tumors were not "active". Had another scan last month, same result.
I would encourage you all to do your research so you will not only gain knowledge about this condition, but also help you to determine what questions you want to ask his doctor. A few are https//www.carcinoid.org, ; https//www.netcancerawareness.org, https://www.mayoclinic.org; and http://www.LACNETS.org. I recently attended an online conference with LACNETS that was so very informative and helpful.
Best wishes to you both as you start this journey.

Check out Dr. Eric Liu's new surgery presentation on LACNETS.org -- it's on the homepage right now
He is a surgeon dedicated to NETs. He states he sometimes does surgery on people who have been told something is not resectable. He's very down to earth and just tells it like it is. Good info. Might be a good NETs specialist for a second opinion. Prayers for you and your husband.

Thank you. I will share this with my husband

I appreciate your viewpoint. You have made me feel better. I want my husband to read this and all the other replies.

Hello! I was diagnosed with pNET last december (2022). Grade 2 stage 4. Had surgery on Feb.1. removing most of my pancreas, the spleen and the gallbladder. It was a debulking surgery. ( some of the liver mets also removed). My oncologist started me on Lanreotide in March. In June I had a CT scan showing no new growth and liver mets unchanged. First few injections were rough and I needed a week to recover. It is getting better with time. With last one I was ok after 2 days! Hold on to your faith! There is no cure for our condition but there is maintenance medications that make it bearable. Hugs to you! 💜🦓