Are GLP meds associated with growth in PNETs?

Posted by john2025 @john2025, 3 days ago

I have a small (1cm) PNET in the tail, and use Mounjaro for diabetes & weight loss. 2 endocrinologists recently told me that there is research associating GLP use with growth in PNETs, and if I’m not getting enough value from the Mounjaro it is best to stop taking it.

GLPs have kept my weight at a plateau, but they have not resulted in weight loss. I’m thinking of stopping the Mounjaro in light of the endocrinologists’ comments. Has anyone heard of the GLP/PNET association and do you have any recommendations?

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

cradko51 | @cradko51 | 3 days ago

Hi I took glp1 ozempic almost 2yrs during this time nets tumor showed up in my lung.

cradko51 | @cradko51 | 3 days ago

In reply to @cradko51 "Hi I took glp1 ozempic almost 2yrs during this time nets tumor showed up in my..." + (show)

@cradko51 its malignant

Turkey, Volunteer Mentor | @tomrennie | 3 days ago

@john2025 Hi and welcome to Mayo Connect. I found the following on Neuroendocrene Tumor Research Foundation's website about a recent study:

"It’s very important to stress: this was a laboratory study, not a clinical trial. It does not prove that GLP-1 drugs make NENs grow, or that they are safe, in real patients. But it does suggest that:

Only a small fraction of NENs may even have the “docking station” (the GLP-1 receptor) that these drugs can act on. Among those that do, especially some duodenal and pancreatic NETs, there may be a potential for GLP-1-driven growth that deserves more research.

What should you do if you have a NEN and use a GLP-1 drug?
First and foremost: don’t stop your medication on your own. GLP-1 drugs can be very helpful for diabetes, weight, and heart health, and stopping suddenly can be risky. Instead, use this study as a starting point for a conversation with your care team. Ideally, talk with both:

Your NEN specialist or oncologist, and the clinician who prescribes your GLP-1 drug."
https://netrf.org/2025/12/17/glp-1-drugs-and-neuroendocrine-cancer-what-a-new-study-suggests/

Turkey, Volunteer Mentor | @tomrennie | 3 days ago

In reply to @cradko51 "Hi I took glp1 ozempic almost 2yrs during this time nets tumor showed up in my..." + (show)

@cradko51 Hi and welcome to Mayo Connect. Please see my above comment with information from the Neuroendocrene Tumor Research Foundation on a recent study. Thanks.

john2025 | @john2025 | 3 days ago

In reply to @tomrennie "@cradko51 Hi and welcome to Mayo Connect. Please see my above comment with information from the..." + (show)

@tomrennie
Thanks for sharing the study! I’m grateful for your quick reply! There sure is a lot to learn.

Turkey, Volunteer Mentor | @tomrennie | 2 days ago

In reply to @john2025 "@tomrennie Thanks for sharing the study! I’m grateful for your quick reply! There sure is a..." + (show)

@john2025 You are welcome. There is a lot to learn. With technology bringing new solutions to patients quicker than ever, what to learn is constantly changing. The challenge becomes where do you get reliable information. I personally start with Mayoclinic.org for medical data, I get treated there, and netrf.org for research data. I limit my information sources as the internet and AI frequently provide misinformation that isn't medically proven. Show me the data. I don't want to have unrealistic expectations about my treatment. Why do that to myself? Battling NETs is already hard enough. Does this make sense?