1. < Neuroendocrine Tumors (NETs)

Has anyone had the peritoneal stripping surgery?

Posted by fraaseo @fraaseo, Mar 29 7:34pm

I was diagnosed with a small bowel obstruction (SBO) in 2022 that turned out to be Stage 2 NETS. Had surgery & did fine until 2024 when CT/PET revealed several hot spots. Referred to surgical oncologist that specializes in NETS; had major surgery, removing gallbladder, appendix, triangle piece of liver, part of diaphragm muscle, surgeon excised the previous SB resection & reconnected. He stripped most of the diseased peritoneal lining of all of my organs, most painful surgery I’ve ever had. Started Octreotide shot 3 weeks later, every 28 days. It’s now 2025 & recent CT shows more areas of concern. Waiting on follow-up appt with Dr.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 30 6:22am

Hello @fraaseo and welcome to the NETs support group on Mayo Connect. On Connect, there are other discussions on NETs in the small bowel. Here is a link with posts from members who have had similar issues, https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/?search=small%20bowel&index=discussions.

From your post, it appears that surgery has been the only treatment you have had. Is my understanding correct? How are you feeling? What are your most bothersome symptoms now?

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fraaseo | @fraaseo | Mar 30 9:18am

Three weeks after 2nd surgery I started the Octreotide injections; no adverse side effects except for diarrhea which I’ve had since first SBO surgery. Feel fine most of the time.

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jlsgt | @jlsgt | Apr 2 9:03am

I tip my hat to you! The fact that you've had that much surgery and seem to be feeling good is a real testament to your resilience and to your surgical team's capability. I've had a small bowel resection and removal of nearby hot tissue/lymph nodes but your experience much more extensive. Lanreotide and PRRT are treatments your care team might also consider. Best of luck to you.

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fraaseo | @fraaseo | Apr 2 11:14am

Thank you, I feel great! Recent CT FU with oncologist shows only one area of concern. Small area in right cecum, unsure if tumor or scar tissue, will have PET scan in 3 months, continue monthly Octreotide.

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