Neuroendocrine Tumors (NETs) Support Group

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Comment

While I haven’t been diagnosed with DIPNECH I am 2 years into my treatment journey living...

https://connect.mayoclinic.org/comment/1070929/

Discussion: Anyone living long-term with DIPNECH on lungs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 19, 2024

Comment

Sorry to hear about your mom. I too have been looking for a DIPNECH Specialist, preferably...

https://connect.mayoclinic.org/comment/1065374/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 10, 2024

Comment

Thank you for your response. I too have the carcinoid tumors and DIPNECH. Just getting started...

https://connect.mayoclinic.org/comment/1160949/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 22, 2024

Comment

I have GERD too. Before my DIPNECH and lung NETs was diagnosed even though we knew...

https://connect.mayoclinic.org/comment/1329913/

Discussion: DIPNCEH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2025

Comment

Hello @californiazebra, I really appreciate the chronology that you provided as you have been dealing with...

https://connect.mayoclinic.org/comment/1179350/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 24, 2024

Comment

You definitely need to get a second opinion from a NETs specialist. Other types of lung...

https://connect.mayoclinic.org/comment/1242687/

Discussion: DIPNECH diagnosis. Has anyone had radiation?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 22, 2025

Comment

I was Dx’d with DIPNECH post op after removal of right middle lobe Oct 2023. PET...

https://connect.mayoclinic.org/comment/1108711/

Discussion: DIPNECH (diffuse idiopathic pulmonary neuroendocrine cell hyperplasia)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2024

Comment

This is @amd12. I wasn't actually diagnosed with DIPNECH, but I was told that I seemed...

https://connect.mayoclinic.org/comment/772509/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 12, 2022

Comment

Hi @rogo It seems like we’ve communicated in the past. I have DIPNECH and lung NETs...

https://connect.mayoclinic.org/comment/1070950/

Discussion: Anyone living long-term with DIPNECH on lungs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 19, 2024

Comment

What type of NETs do you have? Are you currently taking the shots and having issues?...

https://connect.mayoclinic.org/comment/1417947/

Discussion: Octreotide shots

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 18, 2025

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