Neuroendocrine Tumors (NETs) Support Group

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Comments (417)

Hello @woundedwarrior1969 and welcome to the NETs support group on Mayo Connect. I'm pleased that your...

https://connect.mayoclinic.org/comment/911926/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 12, 2023

Diagnosed 1/27/23 lung NET Bronchoscope on 1/24/23 results on 1/26/23 lymph nodes chest ok but nodule...

https://connect.mayoclinic.org/comment/803360/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 29, 2023

@winniew 10 cm lung NET, wow. Glad that’s out of there. Sorry about your IPMN. As...

https://connect.mayoclinic.org/comment/1393078/

Discussion: Anyone have a small pancreatic IPMN cyst that turned out to be cancer?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 13, 2025

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

@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 have a lung NET and My flushing was immediate and only lasted a minute or...

https://connect.mayoclinic.org/comment/1056779/

Discussion: Flushing with NETS lung cancer?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 25, 2024

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

Yes, I'm also glad the surgeon you saw is so experienced with NET lung tumors. Experience...

https://connect.mayoclinic.org/comment/913585/

Discussion: How do I know somatostatin is in my system?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 15, 2023

Has anyone with Lung NETS suffer from pain through to back under shoulder blades? Can only...

https://connect.mayoclinic.org/comment/1057873/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 26, 2024

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

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

Hello @annie12345, I am glad that you found this forum. It will help you find support...

https://connect.mayoclinic.org/comment/1328967/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 17, 2025

@mhcohan Yes, I had a 26 mm lung NET destroyed with microwave ablation 4 years ago....

https://connect.mayoclinic.org/comment/1415806/

Discussion: I have a neuroendocrine tumour in the small bowel and liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 14, 2025

I have a Lung Net that is well defined, grade one. It is in my middle...

https://connect.mayoclinic.org/comment/941988/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 4, 2023

Thank you, and yes, I will try to update. I am not near Mayo, but I...

https://connect.mayoclinic.org/comment/1108927/

Discussion: DIPNECH (diffuse idiopathic pulmonary neuroendocrine cell hyperplasia)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2024

I think histotripsy is pretty exciting. Watch the videos on it. Yes, it was just approved...

https://connect.mayoclinic.org/comment/949922/

Discussion: Anyone heard about Histotripsy for liver NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 18, 2023

Hello @gesmone1 and welcome to the NET support group on Mayo Connect. I'm glad that you...

https://connect.mayoclinic.org/comment/939679/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 1, 2023

Hello @netnan and welcome to Connect. Looking for voices of experience is what Connect is all...

https://connect.mayoclinic.org/comment/1106504/

Discussion: Sarcoidosis and Lung NET, upcoming surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 16, 2024

It is my understanding that you need to understand the cellular structure of the problem and...

https://connect.mayoclinic.org/comment/772407/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 12, 2022

@mhcohan NETs specialists are few and far between. I'm not sure what part of the country...

https://connect.mayoclinic.org/comment/1415817/

Discussion: I have a neuroendocrine tumour in the small bowel and liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 14, 2025

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