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Neuroendocrine Tumors (NETs) Support Group

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Discussion
Need help with diet after a hemicolectomy....
This past year I was diagnosed with 2 primary NET's and had two surgeries to remove them. Since having a portion of small intestine/ileum removed...
Last active: Nov 4, 2023
Discussion
My Husband was newly diagnosed with Carcinoid Cancer
My husband was diagnosed with carcinoid on 1/18/17. He had surgery on 2/3/17 to remove 18" of his ileum small intestine (36 small tumors were...
Last active: Aug 14, 2017
Discussion
Carcinoid Cancer and working
Hi my name is Audra and I was diagnosed with Carcinoid Cancer in 2016. I drove myself to the ER with severe pain and had...
Last active: Jul 31, 2018
Discussion
Pain relief when lying flat?
Hello. I was diagnosed with NETs in February 2023: stage 4, grade 2, well-differentiated low-grade primary 5cm tumor in small intestine, Ki-67 5.4%, with METs...
Last active: Aug 2, 2023
Discussion
Stage 4 Carcinoid tumor: What treatments have you had?
To make a very long story short. Hubby was diagnosed in Oct 2022 with a carcinoid tumor. Dr removed a mass from the small intestine....
Last active: Sep 4, 2025
Discussion
Everolimus for multiple Neuroendocrine tumors
I’ve been on this Mayo support group for a couple of years, but was always the one answering questions and making suggestions, not the one...
Last active: Aug 15, 2024
Discussion
Diagnosed with NET si-NET Stage 1 Grade 1
I went on 1/3 for my first preventative colonoscopy. I was scared to death as I am a worry wort lol. Colonoscopy went fine only...
Last active: Jun 21, 2025
Discussion
Prognosis for Metastasized NET
My husband was dx with metastasized NETs originating in the small intestine 3 years ago. He's been on Sandostatin shot monthly since dx. Up until...
Last active: Mar 20, 2024
Discussion
Diagnosing small bowel NETs with carcinoid syndrome
I have 2 questions about diagnostic tests. 1. Is oral barium contrast safe with a suspected or possible partial small intestinal obstruction? I'm concerned the...
Last active: Mar 19, 2025
Discussion
How many doctors did you see to get to your NETS diagnosis?
I've had the NETs tumor for a long time and saw many doctors before diagnosis. My journey lead me down this road: 2013 Admitted to...
Last active: Nov 22, 2024