Neuroendocrine Tumors (NETs) Support Group

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Comments (931)

My name is André. My caretaker and best friend, Stephanie (wifey) live near the Sanford/Orlando Airport....

https://connect.mayoclinic.org/comment/134542/

Discussion: Welcome to the NETs Group! Come say hi.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 19, 2019

I have a Lung NET that has spread to one of my lymph nodes. Was told...

https://connect.mayoclinic.org/comment/861198/

Discussion: Net unknown cause of breathing problems

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 17, 2023

Hi y’all! I thought I would check to see how you’re doing. Have you experienced facial...

https://connect.mayoclinic.org/comment/1151558/

Discussion: Facial and lip sores from lanreotide injections for NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 4, 2024

Hi @helloitsme, your reaction to finding out you have NETs is normal. Even though NETs is...

https://connect.mayoclinic.org/comment/851198/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 29, 2023

@mamabearpr71 My husbands NEC was found after it had metastasized to his liver but it took...

https://connect.mayoclinic.org/comment/1452983/

Discussion: Diagnosis Frustrated: How you were diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 4, 2025

Dealing with Nets! Wow we are all different I learned as much as I could about...

https://connect.mayoclinic.org/comment/1190887/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 15, 2024

This site is new to me. I was diagnosed with NET and Carcinoid Syndrome in 2013....

https://connect.mayoclinic.org/comment/849237/

Discussion: Anyone else get bloating and abdominal pain from NETS or Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 25, 2023

@rockchick I'm sorry about your diagnosis of NET on the pancreas. As your aware, none of...

https://connect.mayoclinic.org/comment/810956/

Discussion: Scared - Suspected NET on tail of the pancreas

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 13, 2023

Hi, I SO feel for your partner! I have primary pancreatic net, liver mets. and had...

https://connect.mayoclinic.org/comment/1294137/

Discussion: Lanreotide side effects: diarrhea constipation, what to do?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 1, 2025

We did find this out that there is extra help for Medicare patients with the drug...

https://connect.mayoclinic.org/comment/1135041/

Discussion: Short acting Ocreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 2, 2024

Hi, my lung nodule was found incidentally. I had a benign lipoma removed from my abdomen,...

https://connect.mayoclinic.org/comment/827217/

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 16, 2023

@fabiant No she had a open incision, about 12" from center of stomach up. So a...

https://connect.mayoclinic.org/comment/848829/

Discussion: PNET Surgery: My recovery journey

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 24, 2023

I've been on the same journey. Diagnosed March 2024 with PNETS.... Grade 2, Stage 4 metastasis...

https://connect.mayoclinic.org/comment/1333049/

Discussion: First scan after 3 months of lanreotidec

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 22, 2025

Your journey is very similar to mine. I live in Maine, so was only able to...

https://connect.mayoclinic.org/comment/1332659/

Discussion: Stage 4 grade2 Pancreatic Neuroendocrine ki67 20% Lanreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 22, 2025

I also had a grade 1 NET removed from my cecum during colonoscopy. I was referred...

https://connect.mayoclinic.org/comment/1295112/

Discussion: Neuroendocrine Tumor - no treatment plan method

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 2, 2025

I get the lanreotide injection every three weeks. I have GPNET grade 2 resection from small...

https://connect.mayoclinic.org/comment/1280086/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 12, 2025

Thanks for all of that information, @gapsc I know so many NET patients who were misdiagnosed...

https://connect.mayoclinic.org/comment/134270/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 11, 2018

We are a year and half into our journey in living with NET. I can’t remember...

https://connect.mayoclinic.org/comment/932424/

Discussion: Diagnosed with Stage 4 pNET: What should I know?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 19, 2023

In March 2025 I was a healthy, active, 58 year old woman who hiked, biked, went...

https://connect.mayoclinic.org/comment/1480387/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 12 10:13am

Hi, I am a 65-year-old woman. I was having these horrible stomachaches. I finally went to...

https://connect.mayoclinic.org/comment/1434058/

Discussion: New NET in liver and small intestine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 8, 2025

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