Recurrence of Neuroendocrine Tumor

Posted by rogerstc @rogerstc, Mar 11 9:42am

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.

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

REPLY

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?

REPLY

Thank you. I will definitely keep you informed.

REPLY
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