Neuroendocrine Tumors (NETs) Support Group

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Comments (26)

Hello @kathyzee and welcome to Connect. I can understand your concern and wanting to connect with...

https://connect.mayoclinic.org/comment/1344435/

Discussion: Anyone have lung NETs lining your pleura?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 9, 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

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

Yes, I mean Lung Atypical NET

https://connect.mayoclinic.org/comment/938969/

Discussion: Atypical Lung NET treated with radiation: What was your outcome?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 29, 2023

Hi @dak10 and @mimmy. Thank you for sharing your lung NETs info. I also have typical...

https://connect.mayoclinic.org/comment/835869/

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 1, 2023

@elementalmiss, I'd like to add my welcome. I added your question to the Neuroendocrine Tumors (NETs)...

https://connect.mayoclinic.org/comment/1378363/

Discussion: Atypical Carcinoid Tumor - lower left lobectomy. Radiation questions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 24, 2025

Hi @dzerfas, welcome to Connect. There are a number of people talking about carcinoid tumors in...

https://connect.mayoclinic.org/comment/134262/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 17, 2017

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

Thank you for all the information. I have nonfunctioning lung to liver Net just found out...

https://connect.mayoclinic.org/comment/671705/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 17, 2022

Hello @kmcbride77, and welcome to the NETs support group on Mayo Connect. It looks like you...

https://connect.mayoclinic.org/comment/1450859/

Discussion: Has anyone been diagnosed with neuroendocrine carcinoma?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 1, 2025

@californiazebra (Hit send by accident) the large 2.6 cm tumor was more likely to spread. I...

https://connect.mayoclinic.org/comment/1427894/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 31, 2025

@jessie1990 I want to note that after reading so many stories of both GI NETs and...

https://connect.mayoclinic.org/comment/1427890/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 31, 2025

Im sorry to hear you are going through that. It is actually my brother. He had...

https://connect.mayoclinic.org/comment/1325183/

Discussion: Anyone have lung NETs lining your pleura?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 11, 2025

@netnan I also have lung NETs (atypical carcinoids) and DIPNECH with 50+ tumors scattered across both...

https://connect.mayoclinic.org/comment/1107096/

Discussion: Sarcoidosis and Lung NET, upcoming surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 17, 2024

Hello @netnan, had left lung NET atypical carcinoid tumor. It was a little bigger - between...

https://connect.mayoclinic.org/comment/1106611/

Discussion: Sarcoidosis and Lung NET, upcoming surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 16, 2024

What is the difference with Atypical Nets. And typical? This is gig666/ have they say just...

https://connect.mayoclinic.org/comment/1029596/

Discussion: High risk surgery. Is it worth it?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 8, 2024

Greetings....I am still standing and living a normal life at 85 with my disease in the...

https://connect.mayoclinic.org/comment/801669/

Discussion: Neuroendocrine Lung stage 4B with metastasis in liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 25, 2023

I had a small nodule removed last year that was confirmed to be neuroendocrine lung net....

https://connect.mayoclinic.org/comment/1343726/

Discussion: Anyone have lung NETs lining your pleura?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 8, 2025

@gig666 How did your PET scan turn out? Was it a DOTATATE scan specifically for NETs?...

https://connect.mayoclinic.org/comment/1033637/

Discussion: High risk surgery. Is it worth it?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 14, 2024

I too am Atypical lung net. It has spread to liver and several vertebrae in my...

https://connect.mayoclinic.org/comment/939666/

Discussion: Atypical Lung NET treated with radiation: What was your outcome?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 1, 2023

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