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

Neuroendocrine Tumors (NETs) | Last Active: May 9 10:04am | Replies (61)
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Profile picture for seesspotz @seesspotz

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.

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Replies to "Hi, I’m new to post and fairly new to be diagnosed. In October 2025 I went..."
Teresa, Volunteer Mentor | @hopeful33250 | Apr 30 6:47am

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?

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Mike | @dadcue | Apr 30 7:39am

@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.

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