Support Groups

Neuroendocrine Tumors (NETs) Support Group

Public Support Group
266 total results
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
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: Dec 27, 2024
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
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
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
Discussion
Small bowel NET and colon cancer
I am 51 and had my first colonoscopy. One polyp with cancer was discovered and removed. The standard practice it to conduct a CT scan...
Last active: Mar 19, 2024
Discussion
Still have symptoms after surgery
Hi, my name is Mikhail, im from Moscow, Russia. I have had NET of small incestine, surgery in july, 2023. G1, ki67-2%, pT1NOMO. Need to...
Last active: Dec 29, 2024
Discussion
When to Stop Seeking out Surgical Drs...
Hello, I was originally diagnosed with appendix cancer in 2016, goblet cell carcinoma with some carcinoid aspects. I had a debulking and HIPEC and 12...
Last active: Apr 17, 2024
Discussion
Newly diagnosed - neuroendocrine tumor in intestines
on routine ct scan found a small abdominal mass. wasn't clear where it was originating from . went to gyn oncology. finally decided it wasn't...
Last active: Nov 11, 2024