Neuroendocrine Tumors (NETs) Support Group

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Comments (86)

Hi, I am living in Adelaide. South Australia. I went through chemo with non Hodgkins lymphoma...

https://connect.mayoclinic.org/comment/819077/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 1, 2023

Hi I had surgery in Australia in a regional town 3 years ago had 1.5m of...

https://connect.mayoclinic.org/comment/1310494/

Discussion: Primary Small Bowel NETS, Liver Mets

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 22, 2025

I was diagnosed in 2012 as a typical mid-gut, Ileum primary, liver mets and lymphnode mets...

https://connect.mayoclinic.org/comment/869112/

Discussion: Life expectancy with NETs and lifetyle as it progresses

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 30, 2023

@fraaseo I live in Far North Qld Australia. I found out in 2021 I had net...

https://connect.mayoclinic.org/comment/1402161/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 26, 2025

@zacharycat I was allergic to the treatments back in 2005 but luckily I had a very...

https://connect.mayoclinic.org/comment/1530413/

Discussion: Dealing with Lutathera treatments alone: Tips?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 19 7:12am

I was diagnosed with a 2 cm grade 2 with Ki67 4% in the terminal ileum....

https://connect.mayoclinic.org/comment/1365552/

Discussion: 14 CM PNET w/ one year post resection. When will I see reoccurrence?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 7, 2025

I understand how you feel ! I’ve done a lot of research , well mostly google...

https://connect.mayoclinic.org/comment/1237685/

Discussion: Diagnosed with NET si-NET Stage 1 Grade 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 15, 2025

Hello @caitrina and welcome to Mayo Connect. I am so glad that you found this forum....

https://connect.mayoclinic.org/comment/777852/

Discussion: NETs: Anyone has Liver debulking for liver metastasis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 27, 2022

Three tests were done - Sept 2015, April 2016 and Oct 2016. The Sept 2015 showed...

https://connect.mayoclinic.org/comment/283430/

Discussion: NETest from WREN Labs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 23, 2020

I am so sorry I didn't respond earlier as I have been away for the last...

https://connect.mayoclinic.org/comment/770234/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 7, 2022

Sorry. Had to go back and read my medical records. The first one was found by...

https://connect.mayoclinic.org/comment/749888/

Discussion: Liver mets mistaken as hemangioma or harmatoma on MRI

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 15, 2022

Here is a discussion group that might be of interest to you, @mimisayhi --Need help with...

https://connect.mayoclinic.org/comment/1003434/

Discussion: NET in illeum, surgery or proper nutrition?!

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 25, 2024

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

@eesnerd How was your diagnosis confirmed? I get abdominal CT-scans every year to monitor my kidney...

https://connect.mayoclinic.org/comment/1522327/

Discussion: Diagnosis Frustrated: How you were diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 8 9:54am

Hello, My darling husband, age 72, was diagnosed with a well-defined NET on his ileum this...

https://connect.mayoclinic.org/comment/812435/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 16, 2023

I had a small NET tumor, two cancerous lymph nodes and some cancerous tissue in the...

https://connect.mayoclinic.org/comment/1434231/

Discussion: S4, G2 NETS in mesentery. Declined Exploratory Surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 9, 2025

Hi Anita, Thanks for your story. And sorry, but welcome to the “club”. Sounds like you...

https://connect.mayoclinic.org/comment/1355169/

Discussion: My journey to here...

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 24, 2025

Oops I forgot to repost my thread about my journey before sending the last message to...

https://connect.mayoclinic.org/comment/1239033/

Discussion: New Diagnosis: husband's labs are all indicating NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 17, 2025

My situation sounds a little similar in that they marked my tumor from a CT scan...

https://connect.mayoclinic.org/comment/944168/

Discussion: NETs: Scheduled for small intestine resection: What to expect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 8, 2023

Forgive me. You say surgeons removed your small intestine? Twenty to twenty-two feet of the organ...

https://connect.mayoclinic.org/comment/1437257/

Discussion: How do I eat after digestive tract surgery?

Support Group: Digestive Health

Posted: Nov 12, 2025

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