Neuroendocrine Tumors (NETs) Support Group

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Comments (2,370)

I have similar questions and would like to be added to your followers. I particularly want...

https://connect.mayoclinic.org/comment/775875/

Discussion: Treatments for Carcinoids

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 21, 2022

I’m sure they will help! It might not be easy but you are going to a...

https://connect.mayoclinic.org/comment/1287245/

Discussion: Gastrinomas and Whipple procedure

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 22, 2025

Has your team discussed a liver directed therapy such as embolization? There are 3 types: bland,...

https://connect.mayoclinic.org/comment/1197420/

Discussion: Wondering if we are making the right choices in our NET fight.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 26, 2024

I have “innumerable” (probably about 80) liver mets. Unknown origin. Diagnosed January 2020. Grade 2/3, well-differentiated....

https://connect.mayoclinic.org/comment/796179/

Discussion: What topics do you want for the Neuroendocrine Support Group?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 13, 2023

@mdethardt Welcome to Mayo Connect. I can't disagree with your logic. I have a pnet that...

https://connect.mayoclinic.org/comment/1356508/

Discussion: NET tumor of pancreas (1 cm) diagnosed

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 25, 2025

Thanks! A normal life! That's great! Your CT was negative with tumors in SI causing a...

https://connect.mayoclinic.org/comment/1260147/

Discussion: Diagnosing small bowel NETs with carcinoid syndrome

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 17, 2025

@ricki8- I have been on Lanreotide for 2 yrs on March 10 :). My gallbladder was...

https://connect.mayoclinic.org/comment/1255238/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 11, 2025

Get it removed asap. If it spreads your going to be in trouble. I have NET...

https://connect.mayoclinic.org/comment/810674/

Discussion: Scared - Suspected NET on tail of the pancreas

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 13, 2023

My husband also has NET in small intestine and liver. Can someone tell me what symptoms...

https://connect.mayoclinic.org/comment/1425989/

Discussion: NETs with Liver metastasis: starting lanreotide injections

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 29, 2025

My husband’s journey started In 2015 with stomach pains nothing diagnosed. Then in 2019 he was...

https://connect.mayoclinic.org/comment/1121892/

Discussion: Pancreastatin level at 1500

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 11, 2024

@jasonrex86 I have not done RFA but I have had a hepatic artery embolization to treat...

https://connect.mayoclinic.org/comment/1527291/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 15 9:08am

My husband was diagnosed with NETS in December. The tumor they spotted is on his liver,...

https://connect.mayoclinic.org/comment/1498576/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 5 9:09am

If you are considered a candidate for surgery, my advice would be sooner than later. My...

https://connect.mayoclinic.org/comment/1065498/

Discussion: Grade 1 Non-functioning (NF) NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 10, 2024

davisnrn: I read your post I am going to be 70 and I am in my...

https://connect.mayoclinic.org/comment/1017749/

Discussion: Statistics on progression free survival while on SSA / Lanreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 18, 2024

I started taking Lanreotide 2/15/23. I had similar side effects at first until full blockage and...

https://connect.mayoclinic.org/comment/898816/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 19, 2023

Hello, my husband (55 years old) was diagnosed with grade 1 stage 4 (primary in small...

https://connect.mayoclinic.org/comment/1295494/

Discussion: What should I do? Carcinoid symptoms but no answers.

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 3, 2025

Hello @immmm I appreciate your posting this interesting question. Many of us have been diagnosed with...

https://connect.mayoclinic.org/comment/167643/

Discussion: Lesions, Cystic liver mets, vs Tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 15, 2017

I was diagnosed with a net tumour in my colon in 2021. This metastasized to the...

https://connect.mayoclinic.org/comment/1076135/

Discussion: Neuroendocrine Carcinoma with Liver Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 28, 2024

Thank you Colleen. They have done following tests in order below Xray - saw a mass...

https://connect.mayoclinic.org/comment/794480/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 9, 2023

Hi I was diagnosed with NET in my small intestines just like you in 2011 I...

https://connect.mayoclinic.org/comment/752699/

Discussion: Newly diagnosed with NET in liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 22, 2022

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