Can anyone share information about NET in small intestine?

Hello @latricebj and welcome to Mayo Connect. Here is some information on all of the functions and parts of the small intestine from Cleveland Clinic's website. Do you know which part of the small intestine your NET was located?
--Small Intestine
https://my.clevelandclinic.org/health/body/22135-small-intestine
I have had three surgeries for NETs on the duodenum bulb, which is part of the small intestine. My first surgery was in 2003 and my last surgery was in 2016. So you can see that I have lived for over 20 years with this. My lesions have been small and so far there has been no metastasis.

Here is a listing of the posts on Connect that discuss members' experiences with NETs in the small intestine:
https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/?search=small+intestine#discussion-listview
Please read these posts and you will learn about the experiences of others.

If you could share a bit more how was your NET discovered, through an upper endoscopy or other test? Have you had any surgery yet to remove the NET?

I have this condition also. Are you having symptoms? How was this discovered? It seems everybody's journey is different with this. You have come to a good resource for learning about it. Any specific questions? Good news is that people can live for a long time with it.

I cannot say that I was experiencing any symptoms that would have me concerned or even suspect this diagnosis. I had a routine colonoscopy and it was discovered. I did have a few questions:
How long between diagnosis and surgery is it usually?
Is the recovery time extensive?
What are bowel movements like after?
Is a specific diet that I should follow?
While I know this varies from person to person, just wanted to hear others experience.
Thanks for responding

There are doctors that specialize in NETs care. There are surgeons that specialize in NETs surgery. You need good doctors. It's a unique cancer. Some patients have several surgeries, some never do. Most of us have this cancer for a long time before discovery. That was my case. A PET scan seems to be the standard test for "seeing" this cancer. There are others.

My surgeon told me to eat what I want. I pretty much do that. I was in the hospital for 21 days after survey and on TPN for a month. So, yes, getting over a small bowel resection was not easy.

BMs? yeah, that still happens:) Takes a while to get used to the new plumbing, but not so bad for me 18 months after surgery.

Good morning, the small intestines was the primary source of my NET’s before metastasizing to my liver, as far as surgery, i was diagnosed 2 years ago and haven’t had surgery nor am I a candidate for surgery. So don’t have any experience with what to expect after surgery.. I did have diarrhea before I started my monthly treatments, now I only experience diarrhea for a day or 2 after treatments otherwise it’s fine.. Are you seeing a NET Specialist?

I haven’t seen a specialist yet. I may have to change hospitals because they don’t have one. I have a CT scan this week to see the extent.

My husband was diagnosed with GTSBnet grade1-grade2 well-differented tumor 3 years ago. First you have to find a surgeon who specializes in Neuroendocrine cancer. The sooner the better. You have to get Octreotide in IV before receiving anesthesia since you can go into carcinoid crisis. My husband’s primary tumor was located deep into small intestines. The primary tumor was removed and 8 small lesions that doctor felt and removed 5 ft of small intestines. It was a complexed surgery. Recovery was tough. Unfortunately for my husband he had the cancer for along time before diagnosed. His cancer metastasis to lymph nodes, liver, and bones which did not show up on CT scan you need a Pet Scan to see if it metastasis .He is now 3 years since being diagnosed. He has done monthly injections, he also has completed 4 cycles of PRRT . His liver has over 35% tumor burden. He has many bone nets from skull to feet. He now has heterogeneous in bone marrow. This cancer is considered 100% cure done with surgery. My husband’s was also told his was slow growing. In a 6 month time from a pet scan on liver was 6 spots so went with a stronger injection unfortunately 6 months later there were too many lesions to count. PRRT was started probably should have done sooner. Don’t know what is going to happen next but I know that if we would have had found it sooner and then surgery 100% cure and not have to do all of this we would have. Good luck and remember every case is different. But we were told slow-growing cancer also. Hope this helps you make your decisions remember everyone reacts differently to treatments

Have you had a PET scan? 60% of the time NETs have spread before they find one. And I think over 75% of patients ultimately have metasasis. You need a specialist ASAP. I was diagnosed with SI Net 1/4/23 after numerous trips to my GP for symptoms over 18+ months. It had spread to stomach and liver. I had emergency surgery 4/21/23 after the SINET caused a blockage. I've cut out red meat, alcohol, foods high in amines. I try to eat mostly whole foods and less processed foods. Is/are your NET(s) functioning or non-fuctioning. This will affect your diet and your oncologist recommends for care. My BM are not much different from before the SI resection and removal of my gallbladder. I do get diarrhea increase around the time of my monthly Lanreotide injection. Hang in there. I'm 56 now and work out every day and otherwise live a normal life. Best of luck to you.🙏

I also had small in intestine had surgery soon after finding out they took about a foot of intestine out with attached fibroid that were positive. Positive in liver about 5 years later. I have several. Watching growth that has been slow. I have noticed and learned certain foods cause diarrhea. I am very Sugar sensitive. Good luck