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Neuroendocrine Tumors (NETs) Support Group

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So, now just still waiting, losing my mind being worried and new quest
Number 1......I have realized my stool has been kind of chunky and yellowish for a couple months.......so I read that can be from stress alone,...
Last active: Oct 7, 2025
Discussion
So many questions about wjether or not I have Carcinoid Cancer/NETS?
Hello all. My Info. (Retired 2022. ECMO Specialist Perfusion/Registered Respiratory Therapist and 35 years in Critical healthcare)Severe Asthma(environmental) my whole life. Never smoked. A glass...
Last active: Jun 24, 2025
Discussion
Carcinoid tumor of the appendix.PET scan results
Hi everyone i was diagnosed w a carcinoid tumor of the appendx. It was removed 8 m again along w my rt colon. Fast forward...
Last active: Feb 21, 2023
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
Neuroendocrine Lanreotide (Advanz Pharma) Problems
So, I'm writing this on behalf of my mom. She was first diagnosed with pancreatic neuroendocrine cancer in Sept/2019, because of the extent of the...
Last active: Feb 17 8:54pm
Discussion
New Diagnosis: husband's labs are all indicating NET
My husband's labs are all indicating NET. His Chromogranin levels are 2474 and repeated is 1944. PET Scan did not light up. Next week is...
Last active: Mar 31, 2025
Discussion
Who has had Distal Pancreatectomy and regretted it?
I am seeking input about experiences with losing the tail of the pancreas and spleen. Has this been the right choice for you? I will...
Last active: Apr 23, 2023
Discussion
Could a mass on adrenal gland be linked to my carcinoid lung tumor?
I am 75. Had right upper lung lobe removed in August 2022Have multiple 5 cm carcinoid tumorettes in lungCould a mass on my adrenal gland...
Last active: Apr 4, 2025
Discussion
Questions I should ask before surgery for Lung NETs?
I’m scheduled for a zoom call with a nurse Jan 8 in preparation for robotic surgery of a 13mm typical neuroendocrine carcinoid. I prefer to...
Support Group: Lung Cancer
Last active: Jan 2, 2024
Discussion
How rare is it???
I have stomach nets, sibo (small intestinal bacterial overgrowth), Autoimmune Atrophic gastritis and Stomach nets. I’m currently on the wait and watch protocol for the...
Last active: May 8, 2025