Neuroendocrine Tumors (NETs) Support Group

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Comment

There are only about 300 documented cases of DIPNECH which is why most doctors have never...

https://connect.mayoclinic.org/comment/1205680/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 7, 2025

Comment

@ggiinnaa I wonder if you also have DIPNECH like I do that might explain the other...

https://connect.mayoclinic.org/comment/1441023/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 17, 2025

Comment

There are many other threads going on lung NETs and DIPNECH. If you use the search...

https://connect.mayoclinic.org/comment/1285781/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 20, 2025

Comment

Hello @sadragliz and welcome to the NETs support group on Mayo Connect. The reasons why a...

https://connect.mayoclinic.org/comment/1243830/

Discussion: DIPNECH diagnosis. Has anyone had radiation?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 23, 2025

Comment

Hello @lrittmiller and welcome to the NETs support group on Mayo Connect. We have many members...

https://connect.mayoclinic.org/comment/1107836/

Discussion: DIPNECH (diffuse idiopathic pulmonary neuroendocrine cell hyperplasia)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 18, 2024

Comment

Hi, another DIPNECH ‘club’ member here. My diagnosis was late 2023 and I had an ablation...

https://connect.mayoclinic.org/comment/1392689/

Discussion: Biopsy showed DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 13, 2025

Comment

Jan, sorry to hear about all of your health challenges. Sometimes DIPNECH is misdiagnosed as asthma...

https://connect.mayoclinic.org/comment/1222295/

Discussion: Already on oxygen - diagnosed with DIPNECH: What happens next?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 26, 2025

Comment

Hi @jhhaas, I'm tagging fellow members like @mcohan @magnum2 @meryls12 @californiazebra who have experience with DIPNECH...

https://connect.mayoclinic.org/comment/976431/

Discussion: Anyone had surgery to remove typical carcinoids of the lung?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 7, 2023

Comment

Hi Marcia, I have DIPNECH and currently I only use inhaled steroid (fluticasone/salmatrol) and it has...

https://connect.mayoclinic.org/comment/1173763/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 15, 2024

Comment

Anyone diagnosed with DIPNECH? I’ve had 3 injections of Octreotide so far. I started having GI...

https://connect.mayoclinic.org/comment/1193098/

Discussion: DIPNECH (diffuse idiopathic pulmonary neuroendocrine cell hyperplasia)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 18, 2024

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