I have a neuroendocrine tumour in the small bowel and liver lesions

@fraaseo Thank you for sharing. My second surgery was also cytoreduction with removal of 92 cm ileum and right colon, omentectomy, liver ablation and stripping of peritoneum. It lasted 8 hrs. I am only 9 mos post surgery and doing quite well outside of occasional elimination issues. I know if I had open procedure 5 years ago I would have been better. Anyway, question....how long before your digestion improved, did you have to take bile acid sequestrants? Lastly, I start Lanreotide next week...did you have side effects from that?

I also had Net in terminal ileum, well differentiated, ki-67 1%. First surgery in 2020 was done laparoscopically removing little. I had no side effects after. In 2025, better scans found recurrence and a second surgery removed more of ileum and right colon and 2 tumors were removed from the liver. Scans now are much better, but recovery has been work. Due to loss of the valve and more ileum, I have bile acid malabsorption with bowel issues. Medication and altering diet helps. There are possible liver therapies before one would need transplant. Besides surgery there are ablations. Make sure you have a Net surgeon, it makes the difference. My first talked like he was knowledgeable but made several missteps. Good luck.

Hi, I’m new to post and fairly new to be diagnosed. In October 2025 I went to the ED for what I have since learned was a small bowel obstruction due to a bowel NET. At that visit they incidentally found spots on my liver, which lead to discovery of a ileocecal primary. I’ve been on Octreotide and am preparing for removal of the primary in May.

Currently I’m seeking a second opinion on my liver. I’ve been told I might be eligible for transplant. I’ve read mixed outcomes on this. Are there any transplant recipients in this group? I’d also appreciate advice on the right hemi colectomy recovery.

Hi, I’m new to post and fairly new to be diagnosed. In October 2025 I went to the ED for what I have since learned was a small bowel obstruction due to a bowel NET. At that visit they incidentally found spots on my liver, which lead to discovery of a ileocecal primary. I’ve been on Octreotide and am preparing for removal of the primary in May.

Currently I’m seeking a second opinion on my liver. I’ve been told I might be eligible for transplant. I’ve read mixed outcomes on this. Are there any transplant recipients in this group? I’d also appreciate advice on the right hemi colectomy recovery.

Hello @seesspotz and welcome to Mayo Connect. You inquired if there were any transplant recipients in this group. I would like to invite @kim1965 to post with you. His wife had a liver transplant after treatment for NETs, and perhaps he can share her experiences with you.
Have any other treatments been offered, such as PRRT?

Getting a second opinion, prior to a transplant, is an important next step. I would encourage you to get this appointment with a NET specialist. There are NET specialists at all three Mayo Clinic locations (appointment information is available at http://mayocl.in/1mtmR63). If it is not possible to be seen at a Mayo facility, here is a link from the Neuroendocrine Tumor Research Foundation with NET specialists in the U.S.: https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/page/8/

How are you feeling now? Do you have a lot of digestive problems? How is your energy level?

@seesportjump Welcome to this group. What specific questions do you have that we can try to help with? We are hopeful we can give some advice.

@seesspotz
What did they do for the small bowel obstruction (SBO?

My NET surgeon seems to think it is just a matter of time until I have an SBO. The implication is it would be better to do a major surgery sooner instead of later. A planned surgery would be better than emergency surgery.

My doctors already know I have a distal ileum NET seen on a Dotatate PET scan. The primary lit up with mets to a few lymph nodes close by. There is possibly one spot call which was called distant "drop" metastasis somewhere near my rectum. I made the comment that everything combined didn't sound that bad and the NET endocrinologist agreed. I'm not completely asymptomatic but a small bowel obstruction doesn't seem imminent.

@dbjoyce I live in Cairns Australia and had net tumours removed from my ileum in 2022. Not a net surgeon but my surgeon opened me up not laparoscopically so he could get what he can out after 4.5 hours he took out 1.5m of my ileum and 10 lymph nodes (4 had nets) now have liver lesions and they are monitoring them. my recovery was ok 7 days in hospital. the medical team made sure i walked around the ward 3 times a day to help with recovery. for now no monthly injections and no symptoms. i do get constipated though. all the best. all i am saying surgeons cannot get it all out unless they feel your intestines as some are so small to see (my surgeon said this)

@siluka I had my first Lanreotide injection last week. Even though the last surgery cleared most of the tumors, my oncologist said that due to presence in the peritoneum, the Lanreotide would decrease regrowth. It wasn't that bad and so far side effects were minimal.