Neuroendocrine Tumors (NETs) Support Group

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Comment

Doctor recommended another test before making the surgery decision. A Netscan. We'll see what that indicates...

https://connect.mayoclinic.org/comment/660238/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 6, 2021

Comment

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

Comment

You are Right about being your own Advocate. That's how I found out I had DIPNECH....

https://connect.mayoclinic.org/comment/1065383/

Discussion: Neuroendocrine cells in Breast and Lungs DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 10, 2024

Comment

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

Comment

Do you see a pulmonologist or oncologist? Reason I’m asking I was told there’s only 1...

https://connect.mayoclinic.org/comment/853997/

Discussion: What do I need to know about NETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 3, 2023

Comment

I also have NET and DIPNECH. Both were found in August of 2024 when my tumor...

https://connect.mayoclinic.org/comment/1288119/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 23, 2025

Comment

Hello @ocean3131 and welcome to the NETs support group on Mayo Connect. I'm sorry to hear...

https://connect.mayoclinic.org/comment/987604/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 28, 2023

Comment

I would strongly request a PET. I've had one recently to see if my dipnech tumours...

https://connect.mayoclinic.org/comment/1142721/

Discussion: Neuroendocrine cells in Breast and Lungs DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 16, 2024

Comment

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

Comment

I was diagnosed with DIPNECH in June of last year. I have surgery to remove the...

https://connect.mayoclinic.org/comment/1244389/

Discussion: DIPNECH diagnosis. Has anyone had radiation?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 24, 2025

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