Neuroendocrine Tumors (NETs) Support Group

Public Support Group

Follow for updates

Search discussions

Start a new discussion

2,548 total results

Comments (2,335)

Morning! My primary was on my ilieum which metastasized to my liver and pancreas. I was...

https://connect.mayoclinic.org/comment/897949/

Discussion: First Lanreotide Injection: Any tips about diet and side effects?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 18, 2023

They call the disease Zebras because no 2 are the same I never had a hot...

https://connect.mayoclinic.org/comment/1196548/

Discussion: What does my dentist need to know about my NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 24, 2024

A 10 cm tumor was incidentally discovered on CT Scan in the fall of 2016. Was...

https://connect.mayoclinic.org/comment/790795/

Discussion: Advanced metastatic paraganglioma diagnosis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 31, 2022

I was diagnosed with NET in the Liver with multiple spots, and a mass on my...

https://connect.mayoclinic.org/comment/754995/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 28, 2022

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

An update to my post in May where I started Cabo 40mg. In December the tumor...

https://connect.mayoclinic.org/comment/1497731/

Discussion: Anyone have experience with cabozantinib (Cabometyx)?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 4 6:52am

I have neuroendrocrine tumors in my liver.six years ago it was near my bowels. Then the...

https://connect.mayoclinic.org/comment/1109539/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 21, 2024

Thank you so much for the information. I’ll start Lutethera infusion on February 6th . I...

https://connect.mayoclinic.org/comment/995130/

Discussion: Update: Lutethera treatment is over

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 10, 2024

I'm curious - do you have lesions in your liver that are considered cancerous? While 'waiting',...

https://connect.mayoclinic.org/comment/917145/

Discussion: Laparoscopic Possible Open Surgery Resection - Small Bowel NETS

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 22, 2023

I have NET cancer of the liver it started in the small intestine tumor was removed...

https://connect.mayoclinic.org/comment/750858/

Discussion: Newly diagnosed with NET in liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 17, 2022

I know Dr. Sonbol myself. Started off with CAPTEM and everything shrunk. I completed 13 cycles...

https://connect.mayoclinic.org/comment/1123223/

Discussion: Everolimus for multiple Neuroendocrine tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 13, 2024

@keisham808 - I had a large mass in the pancreas, that was discovered on a CT...

https://connect.mayoclinic.org/comment/865736/

Discussion: Just diagnosed with pancreatic NET stage 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 24, 2023

I have stage 4 with primary in Duednhm and went through liver ablation treatment last November....

https://connect.mayoclinic.org/comment/1429351/

Discussion: New NET in liver and small intestine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 2, 2025

Been taking Ocreotide for about 18 months 2 shots every 28 days.. stage 4 metastasized to...

https://connect.mayoclinic.org/comment/1196525/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 24, 2024

Don’t forget Lanreotide also causes exhaustion atleast it did for me I have an unknown primary...

https://connect.mayoclinic.org/comment/978236/

Discussion: After liver embolization: Looking for the best diet + food suggestions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 10, 2023

Sorry for the delay in responding. Where are things today? Any changes? I have a pancreatic...

https://connect.mayoclinic.org/comment/1143967/

Discussion: Pancreatic NETs: Looking to connect with anyone with insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 19, 2024

Hi @pamsbass, I had a Pyloric preserving pancreaticoduodenectomy (modified Whipple) liver resection and liver ablation in...

https://connect.mayoclinic.org/comment/1001236/

Discussion: Need more information on NET in head of pancreas

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 21, 2024

My understanding is a grade 3 of the lung is considered small cell or non small...

https://connect.mayoclinic.org/comment/813610/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 18, 2023

Thanks for sharing. What was the size of your larger tumors? What type of ablation did...

https://connect.mayoclinic.org/comment/1380118/

Discussion: Questions for surgeon-considerations choosing PRRT or surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 26, 2025

@susan481 Welcome to Mayo Connect. I have never heard the terms interval progression. Where did you...

https://connect.mayoclinic.org/comment/1326220/

Discussion: Help understand interval progression

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 13, 2025