Neuroendocrine Tumors (NETs) Support Group

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Comment

@jessie1990 Keep crying then. You probably need it. I was diagnosed with stage 4 pancreatic NETs...

https://connect.mayoclinic.org/comment/1454550/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 6, 2025

Comment

@mamabearpr71 My husbands NEC was found after it had metastasized to his liver but it took...

https://connect.mayoclinic.org/comment/1452983/

Discussion: Diagnosis Frustrated: How you were diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 4, 2025

Comment

My wife has been battling NETs since 2014; pancreas and small intestine; they have metastasized to...

https://connect.mayoclinic.org/comment/1450650/

Discussion: Anyone had positive results from Lanreotide injections?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 1, 2025

Comment

@nannybb @jessie1990 A fellow pancreatic cancer patient asked a while back what it was like having...

https://connect.mayoclinic.org/comment/1431644/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 5, 2025

Comment

@ggiinnaa I have been on chemo for over three years to shrink and control my NET...

https://connect.mayoclinic.org/comment/1427505/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 31, 2025

Comment

I have an injection of 125ml Lanreotide every 4 weeks, to stablise my NET in my...

https://connect.mayoclinic.org/comment/1352421/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2025

Comment

I'm so sorry you're going through this. My husband's story is similar to yours, but your...

https://connect.mayoclinic.org/comment/1330919/

Discussion: Neuroendocrine tumor pancreatic tail

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 19, 2025

Comment

Where did you learn that high SUV levels indicate a tumor? I have been getting the...

https://connect.mayoclinic.org/comment/1300552/

Discussion: Focal SUV levels ga68pet/ct… what does that mean?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 9, 2025

Comment

Thank you for your informative and thoughtful reply. I did check for a NET specialist at...

https://connect.mayoclinic.org/comment/1279687/

Discussion: Just diagnosed with PNET: Any thoughts on watch & wait approach?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 11, 2025

Comment

Good morning!!! As I mentioned above, I was diagnosed January 2020, grade 3 (Ki67 17-29 depending...

https://connect.mayoclinic.org/comment/1247365/

Discussion: Anyone have experience with cabozantinib (Cabometyx)?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 28, 2025

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