Neuroendocrine Tumors (NETs) Support Group

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Comments (291)

@nannybb I see that you are waiting for confirmation of a DIPNECH diagnosis. What type of...

https://connect.mayoclinic.org/comment/1609842/

Discussion: Octreotide Injections - Skipping One or More?

Support Group: Neuroendocrine Tumors (NETs)

Posted: 1 day ago

@rogo @triveraderubio @bcraft @bluedane @amd12 @tatteesmom3 @pattirushing @hopeful33250 @larenn @colleenyoung @kristen3 This is an exciting study...

https://connect.mayoclinic.org/comment/871424/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 3, 2023

@californiazebra How and where were you diagnosed with DIPNECH? Did you end up having surgery? I...

https://connect.mayoclinic.org/comment/1584919/

Discussion: Describe your recovery from lung NET surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 27 10:11pm

Hello @ocean3131, as @hopeful33250 mentioned, I have moved your discussion and combined it with an existing...

https://connect.mayoclinic.org/comment/987664/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 28, 2023

Most NETs specialists seem to specialize in GI NETs rather than lung NETs. Handled differently. Not...

https://connect.mayoclinic.org/comment/1532444/

Discussion: DIPNECH dr in GA- Atlanta

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 21 11:31pm

You just need one NETs team as the two conditions are related. You’ll treat them at...

https://connect.mayoclinic.org/comment/1410880/

Discussion: DO I need 2 teams if I have both Nets-lung and DIPNECH?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 7, 2025

Is the endometrium cancer NETs? If not, I’m not sure how they would be related unless...

https://connect.mayoclinic.org/comment/1223490/

Discussion: Relationship between endometrium cancer and DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 28, 2025

I was diagnosed with a lung disorder - DIPNECH. I’m looking to connect with others who...

https://connect.mayoclinic.org/comment/987590/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 28, 2023

Hello @aulynn and welcome to the NETs support group on Mayo Connect. I'm so glad that...

https://connect.mayoclinic.org/comment/1161114/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 22, 2024

It went really well, thank you! It appears that I have DIPNECH and NETs. He is...

https://connect.mayoclinic.org/comment/1024730/

Discussion: Neuroendocrine cells in Breast and Lungs DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 29, 2024

Hello @mlbschuler, I moved your discussion and combined it with an existing discussion titled, "Neuroendocrine cells...

https://connect.mayoclinic.org/comment/1004013/

Discussion: Neuroendocrine cells in Breast and Lungs DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 26, 2024

Hello @tatteesmom3, It is good to hear from you again. I can understand your frustration at...

https://connect.mayoclinic.org/comment/844670/

Discussion: What do I need to know about NETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 17, 2023

Hello @rachismarie, I'm glad that you found Mayo Connect. We have a number of members who...

https://connect.mayoclinic.org/comment/1181711/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 29, 2024

@mbarreras Hi and welcome to Mayo Connect. I too have lung scarring that has been attributed...

https://connect.mayoclinic.org/comment/1563199/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 30 10:05am

I too am in Australia Qld. Like you I have dipnech, hypertension and AF among other...

https://connect.mayoclinic.org/comment/1254944/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 10, 2025

I just watched lunch with docs on YouTube from CCF carcinoid cancer foundation with Robert Ramirez...

https://connect.mayoclinic.org/comment/1417594/

Discussion: DO I need 2 teams if I have both Nets-lung and DIPNECH?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 17, 2025

Hi @amd12 -- Are you still using this message board? Just wondering what the status of...

https://connect.mayoclinic.org/comment/867413/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 27, 2023

@nannybb Thank you for the added information about a DIPNECH diagnosis. In the first sentence of...

https://connect.mayoclinic.org/comment/1609946/

Discussion: Octreotide Injections - Skipping One or More?

Support Group: Neuroendocrine Tumors (NETs)

Posted: 1 day ago

I was just diagnosed with DIPNECH, what can I expect?

https://connect.mayoclinic.org/comment/1003522/

Discussion: Neuroendocrine cells in Breast and Lungs DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 25, 2024

In addition to sharing more detail about your DIPNECH symptoms, in what way do you not...

https://connect.mayoclinic.org/comment/1108016/

Discussion: DIPNECH (diffuse idiopathic pulmonary neuroendocrine cell hyperplasia)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 19, 2024

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