Neuroendocrine Tumors (NETs) Support Group

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Comments (880)

I had all the NET at a before being diagnosed, probably for 5 years they CAT...

https://connect.mayoclinic.org/comment/1057160/

Discussion: Flushing with NETS lung cancer?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 25, 2024

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

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

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

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

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

@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

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

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

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

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

@annie12345 My largest was 2.6 cm and they destroyed it with microwave ablation 4 years ago...

https://connect.mayoclinic.org/comment/1330723/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 19, 2025

Hello @bluedane Thank you so much for your input! They never did biopsy from her lung,...

https://connect.mayoclinic.org/comment/826555/

Discussion: NET lung with Liver Metastasis (stage 4)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 15, 2023

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

@nannybb oxygen levels are 98 99 my gp listened to my chest last week she said...

https://connect.mayoclinic.org/comment/1447711/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 26, 2025

@californiazebra yes my lung specialist said they are very slow growing I'm just hoping surgery is...

https://connect.mayoclinic.org/comment/1428043/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 1, 2025

I'm 75 and diagnosed with neuroendocrine tumors (3) that have been there as much as 50...

https://connect.mayoclinic.org/comment/979104/

Discussion: Anyone with carcinoid tumors in lung and stomach?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 12, 2023

@ladylake- There's a wonderful magazine called CURE magazine. https://www.curetoday.com/ It is absolutely the best in up...

https://connect.mayoclinic.org/comment/232905/

Discussion: Facing Cancer Recurrence, PTSD & Acknowledging Mental Health

Support Group: Cancer: Managing Symptoms

Posted: Mar 22, 2019

@jhhaas I am not sure if I am posting in the correct place. When was your...

https://connect.mayoclinic.org/comment/1433160/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 7, 2025

@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

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