Neuroendocrine Tumors (NETs) Support Group

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Comment

Hi Teresa, Thanks for your concern and prayers. Yes, it will be a liver resection. The...

https://connect.mayoclinic.org/comment/637391/

Discussion: Possible NET with No Evidence of Tumor: Mediastinal Mass

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 20, 2021

Comment

Kwan: Based on our own experiences dealing exclusively with NET's: There may be cases in which...

https://connect.mayoclinic.org/comment/969303/

Discussion: Octreotide Injections - Skipping One or More?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 22, 2023

Comment

I also have Carcinoid Syndrome, PET scan shows it started in the small intestines and metastasized...

https://connect.mayoclinic.org/comment/878862/

Discussion: Where can I find a carcinoid syndrome specialist in Florida?!

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 15, 2023

Comment

Thank you so much for your reply! The oncologist made me aware that DIPNECH is a...

https://connect.mayoclinic.org/comment/772281/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 12, 2022

Comment

I was on lanreotide now on octreotide and yesterday my MRI showed my tumors are still...

https://connect.mayoclinic.org/comment/741450/

Discussion: Treatments for Carcinoids

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 25, 2022

Comment

Thank you for the detailed description, already feeling less stressed. I’ve done a lot of reading...

https://connect.mayoclinic.org/comment/1339250/

Discussion: PRRT side effects and results

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 1, 2025

Comment

Thanks for your reply. It has helped. What you say makes sense. I want to figure...

https://connect.mayoclinic.org/comment/1385978/

Discussion: I saw the surgeon. More confused than ever.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 3, 2025

Comment

The same week I met with the Dr at Dana Farber the first of September 2022...

https://connect.mayoclinic.org/comment/885611/

Discussion: Feeling discouraged and too many specialists

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 26, 2023

Comment

@ineedawhale Yes. I had the DOTATATE Cu64 scan. As it turned out it wasn’t more valuable...

https://connect.mayoclinic.org/comment/1358919/

Discussion: Recently diagnosed with a NET in my middle lobe of my right lung.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 28, 2025

Comment

Nice to see another group! I started on long-acting Octreotide at the end of November and...

https://connect.mayoclinic.org/comment/134515/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 20, 2017

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