Neuroendocrine Tumors (NETs) Support Group

Public Support Group

Follow for updates

Search discussions

Start a new discussion

1,010 total results

Comments (932)

My husband has neuroendocrine pancreatic cancer . Diagnosed July of 2024. stage 3 grade 1. He...

https://connect.mayoclinic.org/comment/1451439/

Discussion: Anyone had positive results from Lanreotide injections?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 2, 2025

The lanreotide and octreotide injections can be a little painful during the injection but side effectss...

https://connect.mayoclinic.org/comment/1439051/

Discussion: What is the best treatment for carcinoid tumor in mesentery?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 15, 2025

I tip my hat to you! The fact that you've had that much surgery and seem...

https://connect.mayoclinic.org/comment/1272388/

Discussion: Has anyone had the peritoneal stripping surgery?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 2, 2025

Thanks very: much for sharing. Were you taking any medications prior to Lanreotide three months ago?...

https://connect.mayoclinic.org/comment/1171155/

Discussion: Experience w/ watch and wait approach for metastatic liver tumor

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 10, 2024

I started Somatulin/ Lanreotide Feb 15, 2023. My side effects are minimal now. However, the first...

https://connect.mayoclinic.org/comment/940458/

Discussion: First Lanreotide Injection: Any tips about diet and side effects?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 2, 2023

Hopefully, a moderator will jump on this discussion to offer you some links to follow, but...

https://connect.mayoclinic.org/comment/919233/

Discussion: First Lanreotide Injection: Any tips about diet and side effects?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 26, 2023

While NETs is a complicated cancer it was an easy diagnosis. A CgA blood test followed...

https://connect.mayoclinic.org/comment/884142/

Discussion: Recently diagnosed with a NET in my middle lobe of my right lung.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 24, 2023

My primary NET tumor was surgically removed from the mesentery along with 15 lymph nodes (9...

https://connect.mayoclinic.org/comment/1480992/

Discussion: Anyone had radiation for carcoinoid in Mesentery?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 12 10:39pm

I think I understand what you are saying. I simply don't believe a person that has...

https://connect.mayoclinic.org/comment/1351870/

Discussion: What's next after SiNETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 19, 2025

Me too! The surgery is exhausting and so are the lanreotide treatments. I worked a job...

https://connect.mayoclinic.org/comment/875009/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 8, 2023

Hello. My husband is in the same condition as you but a little worse. He was...

https://connect.mayoclinic.org/comment/955218/

Discussion: Is everyone with pNETs on creon?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 28, 2023

Does your wife have carcinoid syndrome too? Her tumors and symptoms sounds similar to my husband's....

https://connect.mayoclinic.org/comment/887444/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 29, 2023

Your response is sincerely appreciated - My wife is scheduled for PRRT @Fred Hutch Seattle on...

https://connect.mayoclinic.org/comment/808550/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 9, 2023

Sharon Update: Her Chromogranin level in the most recent test was 164 (a big spike from...

https://connect.mayoclinic.org/comment/776375/

Discussion: Recommendation for Seattle Cancer Care Alliance MDs Treating NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 22, 2022

Hello I have a couple of NETs tumors. One in the lung one in the mediastinum....

https://connect.mayoclinic.org/comment/1198328/

Discussion: Any advice for someone recently diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 27, 2024

I'm exactly your age and my situation appears to be exactly like yours. But my journey...

https://connect.mayoclinic.org/comment/941331/

Discussion: 4 treatment options from my doctor, which one should I start with?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 3, 2023

I did meet with the surgeon. The good news is the biopsy showed slow growth of...

https://connect.mayoclinic.org/comment/847055/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 21, 2023

@jameshoch My husband was diagnosed in 2023 with grade 1, stage 4 NET. The primary tumor...

https://connect.mayoclinic.org/comment/1477609/

Discussion: What does the future look like for a stage 4 NET patient?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 8 3:32pm

Thank you for sharing and your wife is in my prayers. I was thinking all my...

https://connect.mayoclinic.org/comment/866477/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 25, 2023

I just had my 20th Somatuline depot aka Lanreotide injection last week. I too eat dairy...

https://connect.mayoclinic.org/comment/1122213/

Discussion: First Lanreotide Injection: Any tips about diet and side effects?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 12, 2024