Neuroendocrine Tumors (NETs) Support Group

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Comments (240)

@mlbschuler Great news that you were happy with your visit with Dr. Ramirez and he is...

https://connect.mayoclinic.org/comment/1024996/

Discussion: Neuroendocrine cells in Breast and Lungs DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 29, 2024

@jhhaas Good idea to get a second opinion. Glad you don’t have coughing. Octreotide also helps...

https://connect.mayoclinic.org/comment/1143685/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 18, 2024

Thanks for the update. I do not have those mutations so we may have different types...

https://connect.mayoclinic.org/comment/1226513/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 31, 2025

Hi @ocean3131 I also have DIPNECH and you can read my other posts for more details...

https://connect.mayoclinic.org/comment/987810/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 28, 2023

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

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

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

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

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

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

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

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

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

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

@rogo, we share a few similarities. I've also been incorrectly diagnosed with asthma for over 30...

https://connect.mayoclinic.org/comment/1268878/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 28, 2025

@gig666 How did your PET scan turn out? Was it a DOTATATE scan specifically for NETs?...

https://connect.mayoclinic.org/comment/1033637/

Discussion: High risk surgery. Is it worth it?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 14, 2024

@nannybb I agree with you that medical stuff is interesting. I wanted to be a veterinarian...

https://connect.mayoclinic.org/comment/1431902/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 6, 2025

Hi @californiazebra, This is my firs post here, but my diagnosis and treatment is very similar...

https://connect.mayoclinic.org/comment/1071013/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 19, 2024

Ps- I was 74 when I had my right middle lobe removed. Although my tumor was...

https://connect.mayoclinic.org/comment/1255524/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 11, 2025

I was diagnosed with DIPNECH in November 2024 after a segmental left lung resection for 3...

https://connect.mayoclinic.org/comment/1250339/

Discussion: DIPNECH diagnosis. Has anyone had radiation?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 4, 2025

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