Neuroendocrine Tumors (NETs) Support Group

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@jespi It seems to me the interventional radiologist should be able to explain any side effects!...

https://connect.mayoclinic.org/comment/1422048/

Discussion: Anyone deal with severe pain after Y90 treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 23, 2025

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

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

@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

I was diagnosed in January 2020–grade 3, well-differentiated, pancreatic primary with mets to liver, lungs, parotid...

https://connect.mayoclinic.org/comment/1528856/

Discussion: Folfox side effects very difficult, ideas to manage?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 17 8:52am

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

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

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

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

I have my liver ablation this week. I’ll let you know how that goes.

https://connect.mayoclinic.org/comment/1171949/

Discussion: Neuroendocrine Carcinoma with Liver Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 11, 2024

Caitrina, I am glad to see your comments after the liver debunking. It is helpful to...

https://connect.mayoclinic.org/comment/780435/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 3, 2022

I only had a biopsy on my liver. I have many tumors of all sizes on...

https://connect.mayoclinic.org/comment/1237754/

Discussion: Lanreotide Question: Why start before the next scan?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 15, 2025

Thank you, always like positive feedback. It is great you are doing well. The oncologist said...

https://connect.mayoclinic.org/comment/1220030/

Discussion: PNETs: What comes first? Surgery or try to shrink tumor with chemo?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 23, 2025

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