Support Groups

Neuroendocrine Tumors (NETs) Support Group

Public Support Group
166 total results
Discussions (31)
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
Primary Small Bowel NETS, Liver Mets
I’ve included a photo of my liver Mets in case others are interested in what it actually looks like. Photo was taken by NETS surgeon...
Last active: May 24 7:52am
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 5:46pm
Neuroendocrine tumor in small bowel with lymph nodes involved
Hello there, Anyone with small bowel carcinoma with lymph nodes involved? I was diagnosed with NETs of small bowel carcinoma stage 3, grade 1 on...
Last active: Jun 5, 2023
Small Bowel Neuroendocrine Cancer, Metastasis to Mesentery Recurrence?
I was diagnosed in ‘21 (51 y/o) with SB net and metastatic tumor in the mesentery lymph nodes. All successfully resected. The metastasis in mesentery...
Last active: May 26 6:45pm
I have a neuroendocrine tumour in the small bowel and liver lesions
I have been waiting for surgery to remove a neuro endocrine tumour(NET) in the small bowel and lesions in the liver.
Last active: Mar 2, 2024
NETS Mesentery, Small Bowel Resection, Lanreotide, Octreotide, Story
Maybe my story helps somebody. I've had well differentiated Nets for a while now. A review early last year of a 2019 CT confirmed mesenteric...
Last active: Jul 27, 2024
Laparoscopic Possible Open Surgery Resection - Small Bowel NETS
Hello All I just discovered this NETS support group and happy to be here. I am recently diagnosed with NETS in small bowel which was...
Last active: Apr 21, 2024
NETs: Scheduled for small intestine resection: What to expect?
I was diagnosed with NET 2 weeks ago. I had symptoms of obstructed bowel which led to a CT scan showing a tumor in mesentery,...
Last active: Apr 3 4:16am
PRRT treatment how does it work?
My husband has small bowel Neuroendocrine cancer that had metastasized to liver, lymph nodes,and bones he had surgery to remove primary tumor in small bowel,...
Last active: Jun 28, 2024
Cough ! What could it be?!
I had Nets in small bowel. Got my surgery on November last year. Since then, am coughing a lot. I did the scan thought it...
Last active: Mar 13, 2023
NETs what to eat? What to avoid?
Hello sweeties As newly diagnosed, as we know we need to know everything about our cancer triggers and what makes us gain control of our...
Last active: Jan 5, 2023
determination of primary site of NET
My son, age 29, who has had very serious digestive problems (sigmoid volvulus resulting in left hemicolectomy, small bowel blockage, bowel perforation, strangulated abdominal hernia,...
Last active: Feb 13, 2023
What’s next: Seeking advice on how to navigate diagnosis appointments?
Hi there! I’ve been posting recently and Thank god I asked about the test and raised my concerns. Before Mayo, I’m flying to MD Anderson...
Last active: May 20, 2024
I recently had surgery to remove NET in small intestine
They did a rt hemicolectomy and small bowel resection. They also did a wedge resection of my liver. They removed all of the tumor. Liver...
Last active: May 12 7:42am
I am one year out with my diagnosis just finished 4th round of PRRT
It’s been a long path, years of flushing, stomach cramps and diarrhea that came and went with no warning or explanation. Had a resection of...
Last active: Jan 22 10:13am
Small Intestine Resection
Hello Everyone I hope ALL is well today. It’s been a long time since I’ve been on here. I’ve been through a lot health wise...
Last active: Apr 23 11:20am
NED GI NETS since 2012. New finding on annual chest CT, Tubular Mucoid
Original dx 2012 NET in terminal ileum. Right hemicolectomy, small bowel resection with 22 mesentary nodes removed, 2 positive. Had my annual imaging 10/19/22 MRI...
Last active: Nov 27, 2022
Carcinoid syndrome; NET not found
I have been receiving treatment for carcinoid syndrome for 3 years. It is believed tumor is in small intestine. Doctors waffle back and forth about...
Last active: Apr 22, 2024
Life expectancy with NETs and lifetyle as it progresses
What is my life expectancy as a result of my NET? Diagnosed 3 years ago with Grade 1, Stage 4 NETs. Primary tumor is probably...
Last active: Jun 1, 2023