Neuroendocrine Tumors (NETs) Support Group

Public Support Group

Follow for updates

Search discussions

Start a new discussion

988 total results

Comments (907)

I hope you get answers soon. As someone who recently had a lung NET I know...

https://connect.mayoclinic.org/comment/1332822/

Discussion: High or Fluctuating Chromogranin A Level: What does it mean?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 22, 2025

Hi @ce1b -- I think you have a great attitude. I agree with your thoughts. Is...

https://connect.mayoclinic.org/comment/861470/

Discussion: Net unknown cause of breathing problems

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 17, 2023

Thank you Colleen. They have done following tests in order below Xray - saw a mass...

https://connect.mayoclinic.org/comment/794480/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 9, 2023

@annie12345 Typical carcinoids are not from smoking (smokers get atypical carcinoids). Nothing you did. My brother...

https://connect.mayoclinic.org/comment/1330066/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2025

Hi @bcraft. I'm new to this site too and what brought me here was a search...

https://connect.mayoclinic.org/comment/838450/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 5, 2023

Thanks so much for the info. Hope the surgery and recovery go as smoothly as possible....

https://connect.mayoclinic.org/comment/1079563/

Discussion: Altitude change after lung biopsy/bronchoscopy

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 2, 2024

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

@hopeful33250 Hi Teresa, You are correct that they did not suggest surgery for me. The reason...

https://connect.mayoclinic.org/comment/861413/

Discussion: Net unknown cause of breathing problems

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 17, 2023

What type of NET do you have and where is it located? I have Typical Lung...

https://connect.mayoclinic.org/comment/1251272/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 5, 2025

@californiazebra I know that mine are a grade 2. It is listed as such in my...

https://connect.mayoclinic.org/comment/1430739/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 4, 2025

Hey Teresa, it looks like we were writing at the same time :) Here's some information...

https://connect.mayoclinic.org/comment/134263/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 17, 2017

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

How high is too high for Chromogranin A? Mine was 2590 and urine 5-HIAA, somatostatin level...

https://connect.mayoclinic.org/comment/893988/

Discussion: High or Fluctuating Chromogranin A Level: What does it mean?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 11, 2023

My dipnech was also found by chance, I had fallen down some steps and landed on...

https://connect.mayoclinic.org/comment/1143736/

Discussion: Anyone living long-term with DIPNECH on lungs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 18, 2024

I had a lung biopsy about four years ago. The procedure itself was pretty easy and...

https://connect.mayoclinic.org/comment/1079934/

Discussion: Altitude change after lung biopsy/bronchoscopy

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 3, 2024

I had all the NET at a before being diagnosed, probably for 5 years they CAT...

https://connect.mayoclinic.org/comment/1057160/

Discussion: Flushing with NETS lung cancer?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 25, 2024

My sister and I both ended up with this in our lung. We, both, found out...

https://connect.mayoclinic.org/comment/801184/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 24, 2023

@hopeful33250 Hi dear Many thanks for the useful links. Appreciate your reply and your caring Actually...

https://connect.mayoclinic.org/comment/163162/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 27, 2017

Your case sounds almost like mine. My lung tumor is rarely mentioned & the focus seems...

https://connect.mayoclinic.org/comment/1056351/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 24, 2024

I was diagnosed with non small cell carcinoma, they removed part of lung, then diagnosed with...

https://connect.mayoclinic.org/comment/1393035/

Discussion: Has anyone been diagnosed with neuroendocrine carcinoma?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 13, 2025

Pancreatic Cancer

Follow

3570

16 minutes ago

Digestive Health

Follow

18339

43 minutes ago

Follow

8199

54 minutes ago

Melanoma & Skin Cancer

Follow

1071

2 hours ago

Follow

10069

2 hours ago