Neuroendocrine Tumors (NETs) Support Group

Public Support Group

Follow for updates

Search discussions

Start a new discussion

988 total results

Comments (907)

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

Hello @ocean3131 and welcome to the NETs support group on Mayo Connect. I'm sorry to hear...

https://connect.mayoclinic.org/comment/987604/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 28, 2023

I was recently diagnosed (this week) with a Neuroendocrine Tumor in my lower lung and one...

https://connect.mayoclinic.org/comment/806203/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 4, 2023

Since you have 5 lung NETs, read up on DIPNECH which is something some of us...

https://connect.mayoclinic.org/comment/1359327/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 29, 2025

Interesting. I get all that. And totally understand waiting to get it checked because it's so...

https://connect.mayoclinic.org/comment/1357885/

Discussion: A couple of questions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 27, 2025

@kdubbs Welcome to the DIPNECH family as it’s rare. I have both DIPNECH and lung NETs...

https://connect.mayoclinic.org/comment/1391732/

Discussion: Biopsy showed DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 11, 2025

I also have multifocal adenocarcinoma , was diagnosed in 2011 at mayo. Have had two surgeries...

https://connect.mayoclinic.org/comment/233083/

Discussion: Facing Cancer Recurrence, PTSD & Acknowledging Mental Health

Support Group: Cancer: Managing Symptoms

Posted: Sep 20, 2019

i’ve done “watch and wait” for numerous “growth” conditions on internal organs. i’ve been fortunate that...

https://connect.mayoclinic.org/comment/1067016/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 13, 2024

@jeanadair- Good morning. I am so glad that you wrote back. It's quite something, isn't it...

https://connect.mayoclinic.org/comment/232709/

Discussion: Facing Cancer Recurrence, PTSD & Acknowledging Mental Health

Support Group: Cancer: Managing Symptoms

Posted: Dec 8, 2018

Mark, sorry to hear about the progression and all you’re going through. My brother had lung...

https://connect.mayoclinic.org/comment/1410645/

Discussion: NET's Metastasis to Brain

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 7, 2025

Hello, I was diagnosed a year ago with NET in my left lung. I had surgery...

https://connect.mayoclinic.org/comment/1231241/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 7, 2025

I'm on the path to getting the help. Lung biopsy and pancreatic biopsy. Will have more...

https://connect.mayoclinic.org/comment/979680/

Discussion: NET symptoms despite follow-up lab work ok

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 13, 2023

Hello @gmapam and welcome to the NETs support group on Mayo Connect. As @californiazebra said, it...

https://connect.mayoclinic.org/comment/884254/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 24, 2023

@kdubbs I have both DIPNECH and lung NETs. Your best bet finding someone to treat DIPNECH...

https://connect.mayoclinic.org/comment/1532862/

Discussion: DIPNECH dr in GA- Atlanta

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 22 12:39pm

@merpreb Thank you for the above response. It does help. I am learning to take things...

https://connect.mayoclinic.org/comment/232933/

Discussion: Facing Cancer Recurrence, PTSD & Acknowledging Mental Health

Support Group: Cancer: Managing Symptoms

Posted: Apr 4, 2019

@jessie1990 I was diagnosed with a mass in my lung in early January a couple of...

https://connect.mayoclinic.org/comment/1440913/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 17, 2025

Hi @peggymariejackson as I mentioned in another one of your posts, I have lung NETs --...

https://connect.mayoclinic.org/comment/861009/

Discussion: Dying from car accident can cause death more so this cancer

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 17, 2023

I was diagnosed with this rare condition 6 years ago . I had a persistent cough...

https://connect.mayoclinic.org/comment/775955/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 21, 2022

@ggiinnaa I've asked my lung nurse can typical carcinoid turn atypical she said no she said...

https://connect.mayoclinic.org/comment/1440975/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 17, 2025

@californiazebra @nannybb @jessie1990 I just got off a Mayo NETs support group call. A lady was...

https://connect.mayoclinic.org/comment/1432500/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 6, 2025

Follow

8199

10 minutes ago

Pancreatic Cancer

Follow

3571

25 minutes ago

Digestive Health

Follow

18345

3 hours ago

Cancer: Managing Symptoms

Follow

5678

9 hours ago

Melanoma & Skin Cancer

Follow

1073

14 hours ago