Neuroendocrine Tumors (NETs) Support Group

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Comments (2,502)

I have been stage 4 since the beginning primarily to the liver. It likes to play...

https://connect.mayoclinic.org/comment/1274239/

Discussion: My doctors know nothing

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 4, 2025

@sposieneedshelp I was diagnosed 3 1/2 years ago with almost the same started in the small...

https://connect.mayoclinic.org/comment/1616982/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: 1 day ago

@harley4650 My wife also only has NET in liver only as least that shows on all...

https://connect.mayoclinic.org/comment/1047348/

Discussion: Spreading NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 8, 2024

@colleenyoung, Not yet, we are now waiting for the biopsy of the liver. The doctor is...

https://connect.mayoclinic.org/comment/1464631/

Discussion: Siewert type 2 Gastroesophageal adenocarcinoma

Support Group: Esophageal Cancer

Posted: Dec 20, 2025

You are so welcome and thank you for words of encouragement. Sounds like you have a...

https://connect.mayoclinic.org/comment/826704/

Discussion: NET lung with Liver Metastasis (stage 4)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 15, 2023

When will you know if the treatment was successful ? I have pancreatic with mets to...

https://connect.mayoclinic.org/comment/1007994/

Discussion: Update: Lutethera treatment is over

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 1, 2024

Thank you for your response. I'd been told "flushing" might be a part of the liver...

https://connect.mayoclinic.org/comment/993700/

Discussion: Anyone have bouts of severe sweats accompanied by muscle weakness

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 8, 2024

Where is he being treated in Georgia? Great physicians in Atlanta at Atlanta Liver and Pancreas.

https://connect.mayoclinic.org/comment/1528138/

Discussion: Liver NETs: Anyone has extreme swelling in feet and ankles?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 16 9:50am

@amygirl I had Histotripsy which was excellent for small tumors in the liver. They never returned.

https://connect.mayoclinic.org/comment/1465179/

Discussion: Primary Small Bowel NETS, Liver Mets

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 21, 2025

I have pancreatic neuroendocrine tumor with liver metastasis. It is grade 1. I am scheduled for...

https://connect.mayoclinic.org/comment/992109/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 5, 2024

Hi I was diagnosed in June of2021 with lung to liver net Ki67 1-5% with two...

https://connect.mayoclinic.org/comment/813436/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 18, 2023

Fortunately, no fatigue. Hypoglycemia worsened but that could also be tumor growth in the pancreas. They...

https://connect.mayoclinic.org/comment/831407/

Discussion: Recurrence in Liver after Whipple

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 24, 2023

I also had similar results on CAP/TEM with my pancreatic NET with liver metastasis. Every thing...

https://connect.mayoclinic.org/comment/1038336/

Discussion: Treatment for GI NET with liver mets not working: Options?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 22, 2024

Hello @cgshields1129 and welcome to the NETs support group on Mayo Connect. It sounds as if...

https://connect.mayoclinic.org/comment/1227266/

Discussion: 4 treatment options from my doctor, which one should I start with?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 1, 2025

My uptake went way up after liver ablation. The surgeon explained that this was normal.

https://connect.mayoclinic.org/comment/1511823/

Discussion: Post PRRT & Post SPECT - Quantitative Response

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 22 8:29am

My oncologist said because the liver and colon feed from same blood supply??

https://connect.mayoclinic.org/comment/1242535/

Discussion: I recently had surgery to remove NET in small intestine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 21, 2025

Please read my comments and experience on Histotripsy (of the liver). 2 articles above you.

https://connect.mayoclinic.org/comment/1199558/

Discussion: I recently learned of histotripsy treatment for metastatic NETs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 29, 2024

@kathyfujii I am not a doctor, nor do I have any medical background, but I "believe"...

https://connect.mayoclinic.org/comment/1609562/

Discussion: Anyone have pNET in pancreatic tail & had distal pancreactomy?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 30 8:32am

Yes, I am seeing a Net specialist. My Liver test will be done on Sept 8th.

https://connect.mayoclinic.org/comment/1350666/

Discussion: Has anyone had a CT Triple Phase Liver test after the removal of Net.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 17, 2025

Hello Teresa, Curious to know what surgeries you had? Any involving the liver or pancreas?

https://connect.mayoclinic.org/comment/1262523/

Discussion: New and concerned about my wife.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 20, 2025

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