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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.

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Replies to "I also had Net in terminal ileum, well differentiated, ki-67 1%. First surgery in 2020 was..."

@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.