Neuroendocrine Tumors (NETs) Support Group

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Comments (257)

@jessie1990 No. I do not recall having lymph nodes biopsied when I had my lung biopsy...

https://connect.mayoclinic.org/comment/1430235/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 3, 2025

Hello @jessie1990, and welcome to the NETs support group on Mayo Clinic Connect. Carcinoid tumors are...

https://connect.mayoclinic.org/comment/1426976/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 30, 2025

@kdubbs DIPNECH sounds much scarier than it is. Sloooowww growing. You’ll be around for a long...

https://connect.mayoclinic.org/comment/1394217/

Discussion: Biopsy showed DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 15, 2025

Hi , welcome to the DIPNECH club 🥴. You’ve come to the right place! I also...

https://connect.mayoclinic.org/comment/1392355/

Discussion: Biopsy showed DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 12, 2025

@jsudjian I don't see any mention of you having NETs so it doesn't seem like it...

https://connect.mayoclinic.org/comment/1378264/

Discussion: Worried about carcinoid syndrome

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 24, 2025

My 88 year old loved one has had a gallbladder full of stones before starting lanreotide...

https://connect.mayoclinic.org/comment/1317638/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 1, 2025

I also have NET and DIPNECH. Both were found in August of 2024 when my tumor...

https://connect.mayoclinic.org/comment/1288119/

Discussion: I am 75 and have carcinoid tumors NET in lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 23, 2025

There are many other threads going on lung NETs and DIPNECH. If you use the search...

https://connect.mayoclinic.org/comment/1285781/

Discussion: I am 75 and have carcinoid tumors NET in lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 20, 2025

I too have small carcinoids in my lungs. In August 2022 I had my right upper...

https://connect.mayoclinic.org/comment/1264503/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 22, 2025

Hello @1peg and welcome to the NETs support group on Mayo Connect. Connect is a good...

https://connect.mayoclinic.org/comment/1262844/

Discussion: Neuroendocrine cell tumor

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 20, 2025

Hello @cgshields1129 and welcome to the NETs support group on Mayo Connect. It sounds as if...

https://connect.mayoclinic.org/comment/1227266/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 1, 2025

So sorry to hear about all your issues. I have DIPNECH also, dx’d after my RML...

https://connect.mayoclinic.org/comment/1222859/

Discussion: Already on oxygen - diagnosed with DIPNECH: What happens next?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 27, 2025

If you’re able, always get a 2nd opinion before surgery. My lung tumor was found incidentally...

https://connect.mayoclinic.org/comment/1209090/

Discussion: Diagnosed with DIPNECH yesterday!

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 11, 2025

They are flushing versus hot flashes. Flushing just turns you red, but you do not sweat....

https://connect.mayoclinic.org/comment/1203258/

Discussion: What does my dentist need to know about my NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 3, 2025

@rachismarie Sorry to hear about all you’re going thru. I understand how scary it can all...

https://connect.mayoclinic.org/comment/1181823/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 29, 2024

Hello @rachismarie, I'm glad that you found Mayo Connect. We have a number of members who...

https://connect.mayoclinic.org/comment/1181711/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 29, 2024

Hi @splendrous 2008-2010: they didn't know what the 50+ nodules were, benign or cancer, so many...

https://connect.mayoclinic.org/comment/1179339/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 24, 2024

Hello @netnan and welcome to Connect. Looking for voices of experience is what Connect is all...

https://connect.mayoclinic.org/comment/1106504/

Discussion: Sarcoidosis and Lung NET, upcoming surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 16, 2024

Hello- I have a carcinoid nodule in my lower left lobe it measures 2.3 cm by...

https://connect.mayoclinic.org/comment/1076510/

Discussion: Lung nodule could be slow growing carcinoid: Watch and wait is scary

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 28, 2024

See comments by annj as I also had my left lower lung removed due to a...

https://connect.mayoclinic.org/comment/1061396/

Discussion: Describe your recovery from lung NET surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 3, 2024

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