Neuroendocrine Tumors (NETs) Support Group

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Comments (932)

Hello sorry to hear about your diagnosis but glad you found this forum. I was diagnosed...

https://connect.mayoclinic.org/comment/851412/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 29, 2023

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

@margaret10: I have been treating Diabetes Type 2 for 30 yrs. Neuropathy symptoms in toes/feet/lower calf’s...

https://connect.mayoclinic.org/comment/1207620/

Discussion: I have 3 neuroendocrine tumors in left lung: Can I handle radiation?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 9, 2025

Hello Again. I was very hopeful that Afinitor would help. My oncologist was seeking a size...

https://connect.mayoclinic.org/comment/134282/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 15, 2019

Hi: I completed the full 4 PRRT treatments in January of this year and had my...

https://connect.mayoclinic.org/comment/728904/

Discussion: PRRT for NETs: Questioning whether I should continue or not

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2022

@djchambers I'm so sorry you have to deal with a reoccurrance. I know how upsetting that...

https://connect.mayoclinic.org/comment/1419380/

Discussion: New NET in liver and small intestine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 20, 2025

@amygirl: If you have a NET diagnosis and biopsy has revealed K67 stain “Stage & Grade”,...

https://connect.mayoclinic.org/comment/1380196/

Discussion: Any one with Neuroendocrine tumors getting the shot once a month?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 27, 2025

I had a bout of embolization, but no cutting. The primary has not been touched at...

https://connect.mayoclinic.org/comment/1232981/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 9, 2025

A quick update for the group as I don't think I have posted one in a...

https://connect.mayoclinic.org/comment/134732/

Discussion: NET - Insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 14, 2021

@katydurgin Hello so sorry you’re going thru this. My MEN1 test came back negative I figure...

https://connect.mayoclinic.org/comment/1491345/

Discussion: Anyone else with a diagnosis of MEN-1?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 26 5:02pm

Hi anyone with NETS recurrence? I had laparoscopy surgery to remove the tumor from my small...

https://connect.mayoclinic.org/comment/1255264/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 11, 2025

Hello @gapsc and welcome to Mayo Connect I am Teresa, a volunteer mentor with Connect and...

https://connect.mayoclinic.org/comment/134268/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 10, 2018

My NET started in the pancreas (though I don't have pancreatic cancer) and migrated to the...

https://connect.mayoclinic.org/comment/1150696/

Discussion: Straight to the liver: Anyone have NETs originating in strange areas?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 2, 2024

I’m home now after surgery and 8 nights in hospital, mostly in the ICU. It was...

https://connect.mayoclinic.org/comment/844203/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 16, 2023

I was diagnosed in Jan 2019 with a well-differentiated, functioning Net with a Ki-67 index of...

https://connect.mayoclinic.org/comment/1028134/

Discussion: Prognosis for Metastasized NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 5, 2024

First time post here. Briefly, my wife started losing weight and feeling fatigued in the first...

https://connect.mayoclinic.org/comment/866425/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 25, 2023

My husband on 1/22/2022 was diagnosed 3 mm carcinoid tumor in his small intestines. We found...

https://connect.mayoclinic.org/comment/1003703/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 25, 2024

Hi Linda How did your scan go? Lots has happened since my last post. I had...

https://connect.mayoclinic.org/comment/837244/

Discussion: Recurrence in Liver after Whipple

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 4, 2023

Hi @dak10 and @mimmy. Thank you for sharing your lung NETs info. I also have typical...

https://connect.mayoclinic.org/comment/835869/

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 1, 2023

I had the same situation as you do. Net tumor went from my small intestine to...

https://connect.mayoclinic.org/comment/1434068/

Discussion: New NET in liver and small intestine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 8, 2025