Neuroendocrine Tumors (NETs) Support Group

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Comments (461)

For anyone in the S. CA area, I had my DOTATATE PET Scan at UCLA in...

https://connect.mayoclinic.org/comment/835350/

Discussion: Octreoscan/Ga-68 DOTATATE PET/CT -- Where to go?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 31, 2023

@jessie1990 Great news and that sounds right for typical lung NETs. They monitor with CT scans...

https://connect.mayoclinic.org/comment/1430647/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 4, 2025

@pammy229 I appreciate the added information on your recent lung NET diagnosis. I'll invite some other...

https://connect.mayoclinic.org/comment/1198262/

Discussion: Any advice for someone recently diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 27, 2024

Hello @kathyzee and welcome to Connect. I can understand your concern and wanting to connect with...

https://connect.mayoclinic.org/comment/1344435/

Discussion: Anyone have lung NETs lining your pleura?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 9, 2025

@breck, Here is a discussion group on Connect that you might find helpful. Here you will...

https://connect.mayoclinic.org/comment/1169616/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 7, 2024

@californiazebra I know that mine are a grade 2. It is listed as such in my...

https://connect.mayoclinic.org/comment/1430739/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 4, 2025

Neuroendocrine or NETs its called is rare. There are some good discussions about lung nets here....

https://connect.mayoclinic.org/comment/1262843/

Discussion: Neuroendocrine cell tumor

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 20, 2025

Welcome @marieritzman. To help me connect you with others like you, can you confirm, do you...

https://connect.mayoclinic.org/comment/931534/

Discussion: Atypical Lung NET treated with radiation: What was your outcome?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 17, 2023

Hello @sydmiller1 and welcome to the NETs support group on Mayo Connect. It appears from your...

https://connect.mayoclinic.org/comment/1333446/

Discussion: High or Fluctuating Chromogranin A Level: What does it mean?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 23, 2025

Yes, the tumor I had ablated was malignant (typical carcinoid). It was biopsied first. The microwave...

https://connect.mayoclinic.org/comment/1208685/

Discussion: Diagnosed with DIPNECH yesterday!

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 10, 2025

@pantfan Hopefully you saw my reply above. I agree about Dr. Ramirez and he speaks about...

https://connect.mayoclinic.org/comment/1585676/

Discussion: Describe your recovery from lung NET surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 28 10:10pm

I take octreotide injections for lung NETs and DIPNECH to control respiratory symptoms (works great) and...

https://connect.mayoclinic.org/comment/1346205/

Discussion: Any one with Neuroendocrine tumors getting the shot once a month?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 11, 2025

Thank you for your reply I'm here in UK an there are not many support groups...

https://connect.mayoclinic.org/comment/1328821/

Discussion: Any one with Neuroendocrine tumors getting the shot once a month?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 17, 2025

I have lung nets.... along with 1 Adenocarcinoma. The top right lobe and parts of the...

https://connect.mayoclinic.org/comment/1323823/

Discussion: Anyone have lung NETs lining your pleura?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 9, 2025

@nannybb Good question. Because there are 3x as many people with GI NETs as lung NETs,...

https://connect.mayoclinic.org/comment/1431581/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 5, 2025

@colleenyoung Hi Colleen, I'm so glad you posted this article. Believe it or not, it was...

https://connect.mayoclinic.org/comment/1055394/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 22, 2024

I coughed constantly for 30 years due to lung NETs and DIPNECH but octreotide injections for...

https://connect.mayoclinic.org/comment/1067737/

Discussion: Describe your recovery from lung NET surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 14, 2024

I too had 5 treatments of sbrt for 2 lung nets. I did not have any...

https://connect.mayoclinic.org/comment/942220/

Discussion: Atypical Lung NET treated with radiation: What was your outcome?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 5, 2023

@mcbyron How was your experience with Dr. Liu? I’m impressed by him after watching many presentations....

https://connect.mayoclinic.org/comment/1142067/

Discussion: Neuroendocrine cells in Breast and Lungs DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 15, 2024

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

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