Neuroendocrine Tumors (NETs) Support Group

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Comments (898)

@jessie1990 Great news and that sounds right for typical lung NETs. They monitor with CT scans...

https://connect.mayoclinic.org/comment/1430647/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 4, 2025

@nannybb I was diagnosed 9 years ago and thought the worst. I am now 73 ....

https://connect.mayoclinic.org/comment/1541034/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 2 9:29am

@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

Hello @kiholt, and welcome to the NETs support group on Mayo Clinic Connect. I appreciate you...

https://connect.mayoclinic.org/comment/1436094/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 11, 2025

I had my middle right lobe and a part of top lobe removed in 2018, pathology...

https://connect.mayoclinic.org/comment/1287231/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 22, 2025

Had carcinoid tumor removed from lung last year, stage 1 cancer, lymph nodes good. Prior to...

https://connect.mayoclinic.org/comment/844635/

Discussion: What do I need to know about NETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 17, 2023

In reply to Blue Dane: I was very recenty diagnosed with 1 NET in my liver...

https://connect.mayoclinic.org/comment/813633/

Discussion: Lost with no confirmation of NETs origin: Innumerable liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 18, 2023

Hi @breck You’ve been through a lot. Sorry to hear they did not get it all....

https://connect.mayoclinic.org/comment/1169807/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 7, 2024

@jessie1990 Typical. My doctor knew I had a spot on my lung, but I don't recall...

https://connect.mayoclinic.org/comment/1438850/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 14, 2025

Hello @kathryncd and welcome to Mayo Connect. I am sorry to hear of this new finding...

https://connect.mayoclinic.org/comment/764453/

Discussion: NED GI NETS since 2012. New finding on annual chest CT, Tubular Mucoid

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 23, 2022

@tomrennie I agree about the second opinion with a lung NETs specialist while you wait. Not...

https://connect.mayoclinic.org/comment/1430662/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 4, 2025

Hi @aliatl I was diagnosed with lung to liver net July 2021; first dr very negative:...

https://connect.mayoclinic.org/comment/824589/

Discussion: NET lung with Liver Metastasis (stage 4)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 11, 2023

Hello @pattirushing I'm glad to hear that you have completed the initial treatment for the lung...

https://connect.mayoclinic.org/comment/847375/

Discussion: Anyone had surgery to remove typical carcinoids of the lung?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 22, 2023

@nannybb I have no idea I've asked lung nurse will I need like chemo or any...

https://connect.mayoclinic.org/comment/1436250/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 11, 2025

I had surgery to remove sm bowel tumor which involved 6 lymph nodes had pet scan...

https://connect.mayoclinic.org/comment/866636/

Discussion: Neuroendocrine tumor in small bowel with lymph nodes involved

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 25, 2023

I get my injections every 4 weeks. I have had 4 and will do my first...

https://connect.mayoclinic.org/comment/896537/

Discussion: How long do I wait between injections and PET scans.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 16, 2023

@nannybb yes anxiety and depression goes hand and hand is it really exhausting battling it every...

https://connect.mayoclinic.org/comment/1436470/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 12, 2025

@jessie1990 Is this lung pain after surgery? That is what I am experiencing. I didn't know...

https://connect.mayoclinic.org/comment/1435861/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 11, 2025

Good morning 3 years ago I had an Adenocarcinoma tumor removed from my right upper lobe....

https://connect.mayoclinic.org/comment/1438478/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 14, 2025

I wish you the best. Please keep us posted. It helps me a lot knowing there...

https://connect.mayoclinic.org/comment/1288361/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 23, 2025

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