Support Groups

Neuroendocrine Tumors (NETs) Support Group

Public Support Group
266 total results
Discussions (32)
Anyone have a neuroendocrine tumor in small intestine?
Are these tumors benign? I was told it is small and most was removed by endoscopy but in an area in the duodenum where surgery...
Last active: Feb 15, 2024
Can anyone share information about NET in small intestine?
I was recently diagnosed with a NET in my small intestine. Dont know much and some of the internet sites are freaking me out about...
Last active: Jan 10 1:26pm
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: Oct 12, 2023
Intestinal Blockage with NETs: Anyone else?
Diagnosed with NETS, small intestine primary. Now susceptable to intestinal blockages. I am day 43 after recent intestinal blockage surgery and system is slow to...
Last active: Sep 29, 2022
What do I need to know about NETS?
What do I need to know about NETS? I would like to know about this cancer. it started in small intestine and has gone to...
Last active: Sep 11, 2023
Pain control using a heating pad
I would like to know if it’s safe to use a hearing pad to relieve back pain due to a NET in the small intestine....
Last active: Mar 9, 2023
NET in illeum, surgery or proper nutrition?!
I have been diagnosed with a small NET (6mm)in illeum of small intestine. I have a nutritionist friend who claims I can kill cancer cells...
Last active: Feb 8, 2024
Treatment for GI NET with liver mets not working: Options?
had a tumor removed from small intestine 5/2022.that metastasis to the liver started octretide shots every 28 days,shots did not work very well with the...
Last active: Mar 25, 2024
Results from MRI confusing: Is it NETs or not?
Because of diarrhea issues an endoscopy was preformed and the doctor found something suspicious in the small intestine. Biopsy results said it was indeed a...
Last active: Jul 15, 2023
Anyone else get bloating and abdominal pain from NETS or Lanreotide?
I have primary NET in the small intestine, spread to stomach wall and liver. I just got my 3rd monthly Somatuline (Lanreotide) injection 4/12. About...
Last active: Feb 26, 2024
Searching for info re NETs and heart issues
I was diagnosed in Feb. 2022 with a NET tumor in the small intestine that was determined to be stage 4. I just returned for...
Last active: Feb 12, 2023
Does sandostatin work?
First diagnosed in 2015 and had stomach pain, vomiting ,and two weeks of diarrhea.After catscan,a blockage wasfound at the junction of large and small intestine....
Last active: Nov 24, 2022
Thank you for your words of encouragement on this journey! Now ???
Just to recap, biopsy showed neuroendrocrine tumor. Had follow up MRI. Mass wasn’t identified. Surgeon said it would be better for GI to try and...
Last active: Sep 8, 2023
Carcinoid cancer in intestine or NETs (Neuroendocrine Tumors)
2016 my husband lost his colon and part of his small intestine following an colonoscopy. He now has an ileostomy which makes treating the cancer...
Last active: Mar 16, 2019
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
After NET surgery I went from having hypothyroidism to hyperthyroidism
Hi! I have had hypothyroidism for many years. Now after my NET surgery on 8-7-23 in which the surgeon removed a large tumor in my...
Last active: Oct 23, 2023
Diet restrictions with Lanreotide?
I had my first Lanreotide injection four days ago on Monday, but was not told of any diet restrictions. I've seen that I should eat...
Last active: Nov 16, 2024
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
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