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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)Comment receiving replies
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.
Replies to "I also had Net in terminal ileum, well differentiated, ki-67 1%. First surgery in 2020 was..."
@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)
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@dbjoyce
This sounds like my case except I haven't had surgery yet. I would consent to laparoscopic surgery but that wasn't offered to me. My NET surgeon is talking about removing everything you mentioned including my gallbladder so I won't gallbladder issues down the road. I would be happy if I got 5 more years from laparoscopic surgery but I'm thinking I will see what my medical treatment options are. I will see the NET endocrinologist this week.
I don't understand why the most invasive treatment is done first so I hope someone can shed some light on this.