Neuroendocrine Tumors (NETs) Support Group

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Comment

@jessie1990 I want to note that after reading so many stories of both GI NETs and...

https://connect.mayoclinic.org/comment/1427890/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 31, 2025

Comment

@mhcohan NETs specialists are few and far between. I'm not sure what part of the country...

https://connect.mayoclinic.org/comment/1415817/

Discussion: I have a neuroendocrine tumour in the small bowel and liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 14, 2025

Comment

Typical carcinoids and DIPNECH are not associated with smoking. The majority of cases are non-smokers and...

https://connect.mayoclinic.org/comment/1288434/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 23, 2025

Comment

I was diagnosed with stage 3 atypical carcinoid in dec of 2023. Ki-67 number was 5....

https://connect.mayoclinic.org/comment/1266745/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2025

Comment

@gprior Thank you for the response. You’ve been through a lot. I’m sorry to hear of...

https://connect.mayoclinic.org/comment/1224889/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 29, 2025

Comment

Hi @jan355 I'm so sorry to hear about your oxygen issues and for so many years....

https://connect.mayoclinic.org/comment/1220927/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 24, 2025

Comment

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

Comment

I has dx’d with DIPNECH last fall after having my right middle lobe removed for 1...

https://connect.mayoclinic.org/comment/1143500/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 18, 2024

Comment

Thank you and we feel the same way. Why not monitor at this point. She feels...

https://connect.mayoclinic.org/comment/1111437/

Discussion: NET on liver: Question about treatments when no symptoms

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 25, 2024

Comment

Good plan to see a NETs team. DIPNECH is rare. Latest data I’ve read is 300...

https://connect.mayoclinic.org/comment/1108887/

Discussion: DIPNECH (diffuse idiopathic pulmonary neuroendocrine cell hyperplasia)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2024

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