Neuroendocrine Tumors (NETs) Support Group

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Comments (362)

I was diagnosed with Grade2 Stage IV metastasized from small intestines to liver. PET scan validated...

https://connect.mayoclinic.org/comment/1162526/

Discussion: NET on liver: Question about treatments when no symptoms

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 25, 2024

Thanks very much for your reply. I have been waiting for the Mayo Clinic E-Consult so...

https://connect.mayoclinic.org/comment/1161723/

Discussion: Dotatate lights only in liver, but report says metastatic to liver?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 23, 2024

Yesterday I saw an oncologist here in Tucson. His thought was that the primary tumor is...

https://connect.mayoclinic.org/comment/176713/

Discussion: Anyone treated for NETs at Mayo Clinic in Jacksonville, FL

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 28, 2019

Husband 4.5 years post pancreatectomy, with excision of the duodenum, pylorus, spleen, gallbladder and also has...

https://connect.mayoclinic.org/comment/1072741/

Discussion: Weight Loss after Whipple: What strategies helped you?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 22, 2024

I was diagnosed Dec. 2021 Tumors started in the small intestines and metastasized to the liver...

https://connect.mayoclinic.org/comment/1035643/

Discussion: What questions should I ask oncologist tumor types and chemo treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 18, 2024

just facts here and you will have to decide for yourself--- and this was ten years...

https://connect.mayoclinic.org/comment/1030398/

Discussion: High risk surgery. Is it worth it?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 9, 2024

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

Did you read something or did someone advise your son against eating beef? I'm not a...

https://connect.mayoclinic.org/comment/969833/

Discussion: Octreotide Injections - Skipping One or More?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 24, 2023

Hello @joy5877 and welcome to the NETs support group on Mayo Connect. I'm pleased that you...

https://connect.mayoclinic.org/comment/940369/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 2, 2023

I was diagnosed in March 2018 with NETs in multiple locations after having a blockage in...

https://connect.mayoclinic.org/comment/807089/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 6, 2023

Hi I feel every bite of your trails I traveled almost the same road , misdiagnosed...

https://connect.mayoclinic.org/comment/792778/

Discussion: Frustrated with the medical establishment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 5, 2023

I had surgery for carcinoid tumors in my small bowel and abdominal cavity 12 years ago,...

https://connect.mayoclinic.org/comment/752939/

Discussion: Carcinoid cancer: Want to meet others

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 23, 2022

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

I know after the 2 treatments the team wanted to see if the PRRT treatments were...

https://connect.mayoclinic.org/comment/1469987/

Discussion: What is the Imaging Protocol Following Completion of PRRT Therapy?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 29, 2025

i Have a carcinoid tumor small in the middle of my intestines and is inoperable i...

https://connect.mayoclinic.org/comment/1384070/

Discussion: What is the best treatment for carcinoid tumor in mesentery?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 1, 2025

Thank you for an insight to your journey.. mine is 2 spots in my intestines. ....

https://connect.mayoclinic.org/comment/1363375/

Discussion: Carcinoid cancer: Want to meet others

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 4, 2025

My husband has been getting Lanreotide injections for 2 1/2 years after a)having surgery to remove...

https://connect.mayoclinic.org/comment/1332000/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 21, 2025

Here’s a brief summary prior to starting treatment with Dr Wolin. 59 year old male presents...

https://connect.mayoclinic.org/comment/1238487/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 16, 2025

I have Grade 1 stage 4 stage NET. The primary tumor was resected which was in...

https://connect.mayoclinic.org/comment/1216428/

Discussion: I am one year out with my diagnosis just finished 4th round of PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 19, 2025

I also had small in intestine had surgery soon after finding out they took about a...

https://connect.mayoclinic.org/comment/1208440/

Discussion: Can anyone share information about NET in small intestine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 10, 2025

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