Neuroendocrine Tumors (NETs) Support Group

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Comments (898)

@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

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

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

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

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

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

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

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

Welcome @triveraderubio As you likely know "diffuse idiopathic pulmonary neuroendocrine cell hyperplasia (DIPNECH) is a rare...

https://connect.mayoclinic.org/comment/772200/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 11, 2022

@annie12345 My largest was 2.6 cm and they destroyed it with microwave ablation 4 years ago...

https://connect.mayoclinic.org/comment/1330723/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 19, 2025

Hello @bluedane Thank you so much for your input! They never did biopsy from her lung,...

https://connect.mayoclinic.org/comment/826555/

Discussion: NET lung with Liver Metastasis (stage 4)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 15, 2023

Thank you for sharing what your nurse said - it gives me a litle more hope....

https://connect.mayoclinic.org/comment/814565/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 20, 2023

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