Neuroendocrine Tumors (NETs) Support Group

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Comments (689)

@destinjim: Your symptoms sound so familiar, Lanreotide injections slowly relieved these symptoms for me; however, I...

https://connect.mayoclinic.org/comment/1467863/

Discussion: Lanreotide side effects: Anyone having GI issues?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 26, 2025

Hi there, that is the diagnosis, stage 4 with mets to liver, spine, and some lymph...

https://connect.mayoclinic.org/comment/1390993/

Discussion: Has anyone been diagnosed with neuroendocrine carcinoma?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 10, 2025

Hello @deb1955 and welcome to the NETs discussion on Mayo Clinic Connect. I am glad that...

https://connect.mayoclinic.org/comment/846257/

Discussion: What do I need to know about NETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 20, 2023

Doctors are only human and do their best. With a less common condition like NET even...

https://connect.mayoclinic.org/comment/1373419/

Discussion: My doctors know nothing

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 18, 2025

Hi - PNet diagnosis in September of ‘20 …. (4) total tumors …. Three in pancreas...

https://connect.mayoclinic.org/comment/1304507/

Discussion: Any one with Neuroendocrine tumors getting the shot once a month?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 15, 2025

Thanks for your update. It made me realize I haven't even looked at this thread since...

https://connect.mayoclinic.org/comment/1272515/

Discussion: NETs: Scheduled for small intestine resection: What to expect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 2, 2025

@sop, I’m sorry to hear that your husband has been diagnosed with these rare tumors, but...

https://connect.mayoclinic.org/comment/943323/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 6, 2023

I was diagnosed in April 2025 after months of diarrhea and heartburn, 2x colonoscopy/endoscopy, and a...

https://connect.mayoclinic.org/comment/1393584/

Discussion: Stage 4 grade2 Pancreatic Neuroendocrine ki67 20% Lanreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 15, 2025

Good morning!!! As I mentioned above, I was diagnosed January 2020, grade 3 (Ki67 17-29 depending...

https://connect.mayoclinic.org/comment/1247365/

Discussion: Anyone have experience with cabozantinib (Cabometyx)?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 28, 2025

Hi Joy, each case of NET is different. I can share our case to give you...

https://connect.mayoclinic.org/comment/952987/

Discussion: Liver Transplant to Treat NETs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 24, 2023

@vinnie694 & @Ins83: DIDDO Ins83! I think Vinnie and my NET small bowel cancer is very...

https://connect.mayoclinic.org/comment/1414228/

Discussion: I have a neuroendocrine tumour in the small bowel and liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 12, 2025

We 'Zebras' will likely have different reactions to treatments. The Oncologist (specializing in NET's) is the...

https://connect.mayoclinic.org/comment/1232825/

Discussion: Lanreotide Question: Why start before the next scan?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 9, 2025

@gig666 We can't say what treatment to do, but what we all can say on this...

https://connect.mayoclinic.org/comment/1054639/

Discussion: NET not found on PET/CT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 21, 2024

So glad to find this! Had NET surgery small intestine and mesentery in 2015 after diagnosis...

https://connect.mayoclinic.org/comment/827137/

Discussion: Long Time Survivor With Concerns re Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 16, 2023

I have not had chemo - PRRT (Peptide Receptor Radionuclide Therapy) is NOT chemo. It is...

https://connect.mayoclinic.org/comment/799329/

Discussion: Neuroendocrine tumor: What tests are used for diagnosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 20, 2023

You’re one treatment ahead of me. I have another Scan June 30th… and the another treatment...

https://connect.mayoclinic.org/comment/1312776/

Discussion: PRRT side effects and results

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 25, 2025

My wife was diagnosed in April 2022, with NET with primary on pancreas, and too many...

https://connect.mayoclinic.org/comment/1207477/

Discussion: Any advice for someone recently diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 9, 2025

Great to hear about stabilization of the disease after the second dose of Lu-177! My son...

https://connect.mayoclinic.org/comment/163150/

Discussion: How to get a second opinion for an international patient??

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 23, 2017

Just clarifying. It’s my significant other that has the diagnosis. Boyfriend. But I feel like we...

https://connect.mayoclinic.org/comment/952171/

Discussion: Is everyone with pNETs on creon?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 22, 2023

Hi I was sick for a long time until we accidentally discovered it was and net...

https://connect.mayoclinic.org/comment/1234800/

Discussion: New Diagnosis: husband's labs are all indicating NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 11, 2025

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