Neuroendocrine Tumors (NETs) Support Group

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Comments (880)

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

Thank you for reply, I don't have a net's team, I rely on my thoracic surgeon...

https://connect.mayoclinic.org/comment/1142739/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 17, 2024

@melmangen, might Mayo Clinic in Jacksonville, Florida be an option for you? Mayo Clinic, Florida has...

https://connect.mayoclinic.org/comment/753620/

Discussion: Anyone gone to Mayo Clinic in Rochester Minnesota for carcinoid tumors?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 25, 2022

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

Hello @amd12 You mentioned in your last post that you would be having another scan to...

https://connect.mayoclinic.org/comment/792439/

Discussion: Pancreatic NF-NET stable since 2005 - surgery or not?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 4, 2023

Hi. Only found out about a neuroendocrine tumor in my lung lingula three weeks ago. Been...

https://connect.mayoclinic.org/comment/1394242/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 16, 2025

@jukebox42 Sorry you feel stressed. Is this a new diagnosis for you? I posted about octreotide...

https://connect.mayoclinic.org/comment/1254968/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 10, 2025

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

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

@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

@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

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

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

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

@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

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

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