Recurrence of Neuroendocrine Tumor

Posted by Mercy @rogerstc, Mar 11, 2025

Hi anyone with NETS recurrence? I had laparoscopy surgery in January 2024 to remove a tumor from my small intestines, and several sounding lymph nodes 2 of which were diseased. The diseased metastasized to my mesentery affecting two nodules. One mesentery nodule was removed, the surgeon was unable to reach the other one. A month after surgery, i had a full body pet/ct scan done with gallium 68 to trace any Nets throughout my body. The only hot spot was in my pelvic area, the unreachable nodule. The scan also reflect that the unreachable nodule notice was shrinking. Fast forward to day, I've been on Lanreotide injections since February 2024. The injections leave lumps in my buttock. I recently had a full body scan, this time they used fdg injection. The report findings revealed a several nodules in my buttocks. I suspect these are from the shots. Because there was some uptake in one of them, the radiologist suspect malignancy. This finding makes me really nervous. Could this be a false positive. I just had a shot two weeks prior to the scan. The scan also showed that the unreachable nodule was no longer visible. However, a new nodule measuring 1.4 cm was found in the mesentery fat slightly cranial to the old nodule. The radiogolist marked it as a non abnormal update. I don't know what this means. Has anyone ever had recurrence come back so soon? I met with the oncologist and he said the injection could show up as active, but its usually not the case as malignant. I really need to get a 2nd opinion. Does. anyone know of a NETs specialist within the Washington DC / Maryland/ Virginia Metropolitan area. My oncologist treats the disease, but he's not a NETs specialist. He wants to do another scan in 6 months, but i think it should be sooner as i am concerned with the time frame im which the one nodule recurred. I am also concerned with the findings on the injection site. My oncologist seems to think that it could be a false positive.

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

nevinrbaskin | @nevinrbaskin | Mar 11, 2025

I use Dr Wolin at Mnt Sinai New York, look him up he dedicated his life study to net as what i understand.

Teresa, Volunteer Mentor | @hopeful33250 | Mar 11, 2025

Hello @rogerstc,

I can understand your concern. Getting a second opinion from a NET specialist is a great idea. Mayo Clinic has NET specialists at all three of its locations. If you would like a second opinion from Mayo, here is a link with appointment information, http://mayocl.in/1mtmR63..

If for any reason, you cannot be seen at Mayo, here is a listing of NET specialists throughout the U.S. I hope you can find one nearby.
--Find a Doctor
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
I have had two recurrences of NETs in the upper digestive tract. My surgeries were in 2003, 2005, and again in 2016. I know how frightened I was when each new NET was found. Please remember that NETs are unlike other cancers. They are small cells and sometimes a few can be missed, even if there have been clear margins from other surgeries. While I can't say this is your situation, this was true in my case.

As much as possible, try not to worry until you see a NET specialist and get their opinion. They will help put your situation in perspective and provide a good plan for treatment going forward.

Will you keep in touch and let me know how you are doing?

Mercy | @rogerstc | Mar 11, 2025

Thank you. I will definitely keep you informed.

drs70 | @drs70 | 1 day ago

Hello,
My close family member had incidental findings of NET 1 in stomach. Gastric level normal and ki-67 less than 2. They removed 5 sessile polyp of less than 1cm. However after 1 year on surveillance endoscopy there were 3 more. They biopsies them not sure if they removed. After the first endoscopy her PET scan was normal.

Anybody here had recurrence this early? Should we worry? I’m still waiting to speak with doctor. The quick report says biopsy of 3 lesions but doesn’t talk about removal.

jlsgt | @jlsgt | 15 hours ago

The lumps can be caused by how the shot is given. It has to be brought up to room temp before administering. Then the shot has to be given very slowly. I tell my nurse I like it cold and slow. A shot of cold spray really helps just before. I've been getting the shot over 3 years now and some nurses not as good as others at giving it. There is an art to it.

Nets is in your body. As far as I know, there is no cure. So I would suggest you haven't had a recurrence. You have been and still are are a NETs patient. As far as PET scan timing and Lanreotide, my service provider will cancel the shot if it's too close to the PET scan date. In fact, I usually get the monthly shot right after the PET scan that same day. I get the shot every month and a PET scan every 6 months. There has been no measurable change really so I suggested we go a year this time before next scan.