Neuroendocrine Tumors (NETs) Support Group

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Comment

How high is too high for Chromogranin A? Mine was 2590 and urine 5-HIAA, somatostatin level...

https://connect.mayoclinic.org/comment/893988/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 11, 2023

Comment

My dipnech was also found by chance, I had fallen down some steps and landed on...

https://connect.mayoclinic.org/comment/1143736/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 18, 2024

Comment

Your case sounds almost like mine. My lung tumor is rarely mentioned & the focus seems...

https://connect.mayoclinic.org/comment/1056351/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 24, 2024

Comment

I was diagnosed with non small cell carcinoma, they removed part of lung, then diagnosed with...

https://connect.mayoclinic.org/comment/1393035/

Discussion: Has anyone been diagnosed with neuroendocrine carcinoma?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 13, 2025

Comment

My sister and I both ended up with this in our lung. We, both, found out...

https://connect.mayoclinic.org/comment/801184/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 24, 2023

Comment

@hopeful33250 Hi dear Many thanks for the useful links. Appreciate your reply and your caring Actually...

https://connect.mayoclinic.org/comment/163162/

Discussion: How to get a second opinion for an international patient??

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 27, 2017

Comment

Welcome @triveraderubio As you likely know "diffuse idiopathic pulmonary neuroendocrine cell hyperplasia (DIPNECH) is a rare...

https://connect.mayoclinic.org/comment/772200/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 11, 2022

Comment

Thank you for sharing what your nurse said - it gives me a litle more hope....

https://connect.mayoclinic.org/comment/814565/

Discussion: Lost with no confirmation of NETs origin: Innumerable liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 20, 2023

Comment

I also had sbrt radiation for lung carcinoids a year ago and have been on monthly...

https://connect.mayoclinic.org/comment/1003928/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 26, 2024

Comment

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

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