Neuroendocrine Tumors (NETs) Support Group

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Comments (240)

Yes, I would say your throat clearing is from DIPNECH. Octreotide fixed that for me. Yes,...

https://connect.mayoclinic.org/comment/1330274/

Discussion: DIPNCEH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 19, 2025

Hello @jhhaas, I appreciate you sharing your DIPNECH experience with @jan355. It does help to hear...

https://connect.mayoclinic.org/comment/1223032/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 27, 2025

So have you considered octreotide injections for the DIPNECH? My allergy issues are respiratory. I was...

https://connect.mayoclinic.org/comment/1205603/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 6, 2025

Hi @cmc188 I have 50+ lung NETs tumors across both lungs. I also have DIPNECH (really...

https://connect.mayoclinic.org/comment/1199984/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 29, 2024

I was recently diagnosed with (1) early stage lung cancer, (2) emphysema (3) DIPNECH with tumorlets...

https://connect.mayoclinic.org/comment/1181526/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 28, 2024

I am 75 and was diagnosed 6years ago, I had half my right lung removed and...

https://connect.mayoclinic.org/comment/1142704/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 16, 2024

No - I went to MSK and they said it was not needed at this point....

https://connect.mayoclinic.org/comment/1108856/

Discussion: DIPNECH (diffuse idiopathic pulmonary neuroendocrine cell hyperplasia)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2024

Since you have 5 lung NETs, read up on DIPNECH which is something some of us...

https://connect.mayoclinic.org/comment/1359327/

Discussion: Recently diagnosed with a NET in my middle lobe of my right lung.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 29, 2025

It can sure be a frustrating journey to diagnosis, can’t it? Glad they figured yours out...

https://connect.mayoclinic.org/comment/1171342/

Discussion: How many doctors did you see to get to your NETS diagnosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 10, 2024

Hi Jane @gram26 I would agree with Theresa to check out all the DIPNECH comments on...

https://connect.mayoclinic.org/comment/882190/

Discussion: Should I see a NET specialist?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 21, 2023

I was told when we destroyed my largest carcinoid tumor 2.6 cm with microwave ablation that...

https://connect.mayoclinic.org/comment/1108812/

Discussion: DIPNECH (diffuse idiopathic pulmonary neuroendocrine cell hyperplasia)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2024

So sorry to hear about all your issues. I have DIPNECH also, dx’d after my RML...

https://connect.mayoclinic.org/comment/1222859/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 27, 2025

Well, it’s great that they’re not growing! Mine are stable also, but my only knowledgeable doctor...

https://connect.mayoclinic.org/comment/1330084/

Discussion: DIPNCEH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2025

Hi @mir123 Thanks for sharing your info. I understand there is little historical info to go...

https://connect.mayoclinic.org/comment/909352/

Discussion: Neuroendocrine cells in Breast and Lungs DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 8, 2023

Thank you so much for this wealth of information. I do have respiratory issues. However, since...

https://connect.mayoclinic.org/comment/1532989/

Discussion: DIPNECH dr in GA- Atlanta

Support Group: Neuroendocrine Tumors (NETs)

Posted: 5 days ago

Hi @tammyv615 Finally someone else who had a lung tumor ablated! I can’t say the procedure...

https://connect.mayoclinic.org/comment/1071170/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 19, 2024

Hi rogo yes I live with diagnosis of DIPNECH & lung neuroendocrine cancer (Typical tumor)confirmed by...

https://connect.mayoclinic.org/comment/1288532/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 23, 2025

Sorry to hear of all your challenges. It's difficult when they are coming from all directions....

https://connect.mayoclinic.org/comment/1228165/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 2, 2025

Hi @aclanton Good luck with the waiting game. I waited for 12 years hearing guesses about...

https://connect.mayoclinic.org/comment/1076443/

Discussion: Lung nodule could be slow growing carcinoid: Watch and wait is scary

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 28, 2024

I have Lungs NETS in both lungs. Recent growth, small amount now diagnosed with DIPNECH. I...

https://connect.mayoclinic.org/comment/1205143/

Discussion: Concerns after lobectomy for carcinoid tumor in lung

Support Group: Lung Cancer

Posted: Jan 6, 2025