Neuroendocrine Tumors (NETs) Support Group

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Comment

I have been diagnosed with a VERY rare lung disease called DIPNECH. Saw the expert at...

https://connect.mayoclinic.org/comment/1162603/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 25, 2024

Comment

Hi - some people do have a chronic cough with DIPNECH. I do not have a...

https://connect.mayoclinic.org/comment/1250753/

Discussion: DIPNECH diagnosis. Has anyone had radiation?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 5, 2025

Comment

AMD, As you like know, diffuse idiopathic pulmonary neuroendocrine cell hyperplasia (DIPNECH) is an extremely rare...

https://connect.mayoclinic.org/comment/661597/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 11, 2021

Comment

Hello @grec, I'm sure you have a lot of questions about this new diagnosis. On Connect,...

https://connect.mayoclinic.org/comment/1048387/

Discussion: Neuroendocrine cells in Breast and Lungs DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 10, 2024

Comment

Welcome, @dipnech67, you are wise to seek a specialist. I'm sure you have seen the recommendation...

https://connect.mayoclinic.org/comment/1054839/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 21, 2024

Comment

Thank you so much for your reply! The oncologist made me aware that DIPNECH is a...

https://connect.mayoclinic.org/comment/772281/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 12, 2022

Comment

I have typical carcinoids and DIPNECH (50+ nodules) so they can't remove them. The largest one...

https://connect.mayoclinic.org/comment/1522918/

Discussion: What is the surveillance protocol for typical pulmonary NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 9 2:15am

Comment

Hi - I am also 75 and have DIPNECH, diagnosed Oct 2023 when I had my...

https://connect.mayoclinic.org/comment/1285320/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 19, 2025

Comment

Hi @nana120 That's such great news to be stable!!! Sounds like the lanreotide is doing its...

https://connect.mayoclinic.org/comment/937205/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 27, 2023

Comment

If you’re able, always get a 2nd opinion before surgery. My lung tumor was found incidentally...

https://connect.mayoclinic.org/comment/1209090/

Discussion: Diagnosed with DIPNECH yesterday!

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 11, 2025

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