Neuroendocrine Tumors (NETs) Support Group

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Comments (438)

Hello @rushlakekathy and welcome to the NET discussion on Mayo Clinic Connect. I am glad that...

https://connect.mayoclinic.org/comment/814504/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 20, 2023

Hi @mayberries, welcome. I see that you have recently been diagnosed with pancreatic NET and you...

https://connect.mayoclinic.org/comment/804962/

Discussion: What's the best way to detect liver metastases?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 1, 2023

Welcome @bridget1980, I hope you saw the helpful and supportive replies you got from members like...

https://connect.mayoclinic.org/comment/801570/

Discussion: Just diagnosed with pancreatic NET stage 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 25, 2023

Outlaw, my wife has almost the same area of pancreas with NET’s mass diagnosed last April....

https://connect.mayoclinic.org/comment/783580/

Discussion: Anyone out there have PNET experiences and outcomes to share?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 11, 2022

Hi @sturns, welcome to the NETs group. Is that a picture of you surfing? The abbreviation...

https://connect.mayoclinic.org/comment/717233/

Discussion: Pituitary and pNET: Can't do the things I love anymore

Support Group: Brain Tumor

Posted: Jun 13, 2022

Hello @laurell410, I'd like to add my welcome to you as you have joined the NETs...

https://connect.mayoclinic.org/comment/694028/

Discussion: Any NET patients from NYC

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 29, 2022

Here is an article that I thought you might interesting, about a youngster with NETs who...

https://connect.mayoclinic.org/comment/134557/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 5, 2021

I ve had awareness of my PANCREATIC NET for a year plus. Rare, with established core...

https://connect.mayoclinic.org/comment/257018/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 22, 2020

@tjstaufr The PET Dotatatescan confirmed that I had 2 NETS in my pancreas, if NETS is...

https://connect.mayoclinic.org/comment/1512000/

Discussion: Neuroendocrine Tumor - no treatment plan method

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 22 11:24am

@ceefer Hi, how are you? I'm sorry to hear what you're going through. It might be...

https://connect.mayoclinic.org/comment/1498901/

Discussion: Neuroendocrine Tumor - no treatment plan method

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 5 4:11pm

@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

@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

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

@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

@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

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

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

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

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

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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