← Return to NET in illeum, surgery or proper nutrition?!

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@ginnym3

Are you seeing an oncologist who is a NET specialist? Is that who is recommending the surgery? If not, I would suggest (my non-medical background opinion as a NET patient) finding an oncologist who specializes in NETs and go from there. Unless your tumor is threatening an obstruction, you have time to find the expert recommendations you need: oncology, surgery and nutrition. I agree that your friend means well but with this rare cancer diagnosis, it’s best to stick with the advice of the experts. Best of luck! We all know how terribly frightening and overwhelming this is for you. We are here to support you.

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Replies to "Are you seeing an oncologist who is a NET specialist? Is that who is recommending the..."

thank you! I have a very good oncologist who is well trained in NET robotic and :laparoscopic surgery and scheduled for Feb 29. I will listen-to my friend nutritionist AFTER surgery.

My husband on 1/22/2022 was diagnosed 3 mm carcinoid tumor in his small intestines. We found a great surgeon who removed the primary tumor from small intestines GI tract. He detected 8 more lesions in his intestines had to remove 5 feet of his small intestines. No return of cancer in that area. Surgeon also removed lymph nodes and 22 lesions on his liver. Surgery was done 3/8/2022. Unfortunately his cancer had spread prior to being diagnosed with cancer. So he probably had it for years before we knew it. By the time we knew it he was considered Stage 4 advanced Neuroendocrine tumor spread to liver, lymph nodes and bones. If we would have gotten the primary tumor out sooner the surgery would have been 100% cured. Now we are 2 years later and the monthly Sandostain injection worked for 9 months keeping it stable On 1/4/2023 he tried Lanreotide injections On 7/12/2023 CT showed that the cancer was growing. On 9/22/2023 he started PRRT therapy has completed his 3rd round on 1/12/2024 one more to go in March. So we stay hopeful. Good luck to you but if you can avoid treatments to fight this rare cancer and we wish that his cancer was found sooner that surgery would have cured it 100% . We Don’t regret doing the surgery stay hopeful