Neuroendocrine Tumors (NETs) Support Group

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Comments (931)

I was diagnosed with nets in April of 2020. The nets were in my right lung....

https://connect.mayoclinic.org/comment/1269123/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 29, 2025

Hi, @matt2024 ! Thank you for reaching out! I am "almost"vegetarian- very little meat and ear...

https://connect.mayoclinic.org/comment/1084252/

Discussion: Grade 1 Non-functioning (NF) NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 10, 2024

Hello @genovaldi and welcome to the NETs support group on Mayo Connect. There is an article...

https://connect.mayoclinic.org/comment/1098550/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 3, 2024

Right now I’m being seen at Johns Hopkins. Because of a developing bowel obstruction the procedures...

https://connect.mayoclinic.org/comment/834012/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 29, 2023

My husband has neuroendocrine pancreatic cancer stage four in liver as well. He's been having trouble...

https://connect.mayoclinic.org/comment/796605/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 14, 2023

My husband was diagnosed with GITract small bowel Neuroendocrine tumor Stage 4 Grade 2 well-differentiated KY...

https://connect.mayoclinic.org/comment/1120029/

Discussion: Everolimus for multiple Neuroendocrine tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 8, 2024

My wife’s case is similar to yours, as she was diagnosed with NET in April 2022....

https://connect.mayoclinic.org/comment/971625/

Discussion: Found PNET on tail of pancreas but told it’s nonfunctional

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 28, 2023

@mmar2025: My PRRT was because the latest MRI showed 40% tumor progression from the 2021 diagnosis...

https://connect.mayoclinic.org/comment/1502103/

Discussion: Neuroendocrine Pancreatic Tumors with KIT Missense Variant Exon 10 GOF

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 9 8:46pm

Hi Chaplain Dan, Your wife’s initial case is similar in many ways to mine… 12 years...

https://connect.mayoclinic.org/comment/1250290/

Discussion: New and concerned about my wife.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 4, 2025

Hello @ beaglebass! My pNET is functioning, so my story may not be too close to...

https://connect.mayoclinic.org/comment/1065411/

Discussion: Grade 1 Non-functioning (NF) NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 10, 2024

I was diagnosed in 2019 with NETS of the liver my tumors were extremely large and...

https://connect.mayoclinic.org/comment/1148532/

Discussion: Straight to the liver: Anyone have NETs originating in strange areas?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 28, 2024

@panorman3: I hope your Oncologist has some experience with Neuroendocrine Carcinoid Cancer due to NET tumors...

https://connect.mayoclinic.org/comment/1396333/

Discussion: My carcinoid tumor is inoperable: What are the best ways to control?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 19, 2025

I'm so sorry you're in this club but its great that you're seeking out answers. I...

https://connect.mayoclinic.org/comment/1356211/

Discussion: My journey to here...

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 25, 2025

Hi, see above on 7/11 from me previously in re: to history. Stage 4 PNET, with...

https://connect.mayoclinic.org/comment/1109828/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 22, 2024

I have a 3 cm tumor near the tail of my pancreas, and “too numerous to...

https://connect.mayoclinic.org/comment/1015671/

Discussion: Anyone heard about Histotripsy for liver NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 14, 2024

Hello, mamandneuroendocrine! I was in a similar situation. My pNET was discovered accidentally during a stroke...

https://connect.mayoclinic.org/comment/953478/

Discussion: Metastatic NeuroEndocrine Grade 3 - ki 80% -

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 25, 2023

Our case has moved from diagnosis of mass on pancreas with spread to liver. Kim finished...

https://connect.mayoclinic.org/comment/942959/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 6, 2023

Original site small intestine/appendix with first surgery in 2004 (they thought it was an appendicitis but...

https://connect.mayoclinic.org/comment/1233382/

Discussion: How does Alcohol use affect Liver NET?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 10, 2025

I'm sorry you have to go through this. My husband was on Everolimus for 3 years...

https://connect.mayoclinic.org/comment/1333991/

Discussion: Everolimus/ Afinitor experience/side effects

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 24, 2025

Am I the only one that Lanreotide makes feel horrid? I’m nauseated and constipated with a...

https://connect.mayoclinic.org/comment/1248824/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 2, 2025

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