Support Groups

Neuroendocrine Tumors (NETs) Support Group

Lock icon Public Support Group
Clear Search
420 total results
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
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
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
Discussion
S4, G2 NETS in mesentery. Declined Exploratory Surgery
I was diagnosed with S4, G2 NETs in my mesentery. Suspected start in intestines but not definitive. After discussion with surgeon who recommended looking and...
Last active: Nov 23, 2025
Discussion
Cu-64 Dotatate PET results show no malignancy. What’s next?
Hi all,I was diagnosed six weeks ago with NET after a small bowel blockage. NG tube and a ton of pain meds relieved my symptoms...
Last active: Apr 17, 2025
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
Recurrence of Neuroendocrine Tumor
Hi anyone with NETS recurrence? I had laparoscopy surgery in January 2024 to remove a tumor from my small intestines, and several sounding lymph nodes...
Last active: Jul 3 3:12pm
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: Feb 17, 2025
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