NETS Mesentery, Small Bowel Resection, Lanreotide, Octreotide, Story

Posted by jlsgt @jlsgt, Jul 15 1:36pm

Maybe my story helps somebody. I've had well differentiated Nets for a while now. A review early last year of a 2019 CT confirmed mesenteric mass was present, but was missed at the time. In spring of '23 CT scan found mass in mesentery approx 5cm x 3cm and plenty of hot lymph nodes localized to area. Neuroendocrine was confirmed by needle biopsy of near lymph node in early 2023. Summer of '23 I had a small bowel resection, then on TPN for 30 days for a small leak to heal and I've been on Lanreotide for 14 months. PETs and MRIs confirm cancer is stable at the present time.

My original symptom was that I couldn't eat much. Felt full all the time. Started losing weight without trying. Might go 2 or 3 days without really eating. After about 50 lbs disappeared, I started trying to get help. It has been a real tough journey at times, but I'm feeling good right now. I'm happy to answer any questions.

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

Teresa, Volunteer Mentor | @hopeful33250 | Jul 16 6:16am

Hello @jlsgt and welcome to the NETs support group on Mayo Connect. NETs are a rare form of cancer many NETs patients were not diagnosed until the NETs became larger. You must be pleased that your cancer is stable at this time. We have other members on Connect who have discussed NETs in the mesentery. Here is one discussion that you might find interesting.

--Newly Diagnosed
https://connect.mayoclinic.org/discussion/newly-diagnosed-and-scheduled-for-small-intestine-resection-what-to/
You said in your post that you lost 50 pounds. Has your appetite returned, and have you gained any of the weight?

jlsgt | @jlsgt | Jul 16 8:14am

Hey Teresa,
Thank you for supporting people here. I see you quite often with good advice. 🙂
My appetite has returned. I'm fortunate in that I can eat what I want. I've gained most of the weight back. I'm much happier as a heavier person. I sleep so much better.

Teresa, Volunteer Mentor | @hopeful33250 | Jul 16 3:17pm

In reply to @jlsgt "Hey Teresa, Thank you for supporting people here. I see you quite often with good advice...." + (show)

I'm happy to hear that you are doing so much better, @jlsgt! I would love to "tag you" when other members mention this type of NET so that you can encourage them. May I do that?