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

@ricki8 thank you so much for your response, still learning how to live between tests. But getting better… Hope everything goes well for you on the Alpha PRRT treatments..

Hi Vinnie
Testing is very important and the tests have improved so much from years ago. Less radiation, with contrast dyes etc. It's good that you are adjusting until cured! At least we have more choices now. Laughter is still always good medicine.
Thanks for the good wishes re: Alpha PRRT! And the best to you as well!

@rschweer
I wanted to be sure you saw the information regarding a virtual NETs support group meeting next week. This meeting originates at Mayo Clinic in Florida. Here is information regarding the speaker and how to register.
https://connect.mayoclinic.org/comment/1424759/

@dbamos1945
Thanks for sharing. Great to hear PRRT was working for you it is likley my next step on lanreotide every three weeks is not effective enough in keeping little buggers at bay.

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.

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.

@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.

After what I learned in my second surgery, it should have never been done laparoscopically. All the smaller metastasis were missed and it spread through my peritoneum and mesentery. While I had no symptoms, in a few weeks to months I would have had a life threatening obstruction. I saw the pictures. Do the most now...you will never get younger or be healthier than you are at this moment. Plus Lanreotide affects the gall bladder so best to get rid of it now. I wish I had the open surgery at the beginning and may have never needed the second. I bless the second doctor at NIH for basically saving me. Those 5 years only gave it the chance to spread. But I am good now.

@dbjoyce Agree! I had a small bowel obstruction in 2022, pathology confirmed SB NETS & 4 affected lymph nodes. Had a successful resection. Fast forward to 2024 PET scan revealed it was back with possible Mets. My NET specialist decided to do an outpatient peek & see laparoscopy to see what he was dealing with. Two weeks later I ended up having a major 7 hour cytoreductive/debulking surgery to strip/remove Mets of liver with triangle resection, 2.5’ lower colon removed, appendix, lower abdominal walls, gallbladder, diaphragm, peritoneum, mesentery mets removed & a repeat small bowel resection. Huge open surgery & somewhat painful recovery. However, I credit my NETS surgeon with having the knowledge to look first & get it all at once! I was started on Octreotide injections & have remained clear for the last 2 years.

@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?