Neuroendocrine Tumors (NETs) Support Group

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Comments (2,337)

I was in for a healthy heart check and the ultrasound showed liver spots. Didn’t really...

https://connect.mayoclinic.org/comment/729640/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 22, 2022

You've been diagnosed with Neuroendocrine cancer? Symptoms? How was this discovered? Maybe you are needing a...

https://connect.mayoclinic.org/comment/1370852/

Discussion: Surgery on Small Intestine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 14, 2025

The Dr that did the y-9o on me called me and warned me 1 bead got...

https://connect.mayoclinic.org/comment/1335558/

Discussion: Anyone deal with severe pain after Y90 treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 26, 2025

Hello Dr! Thank you for doing this Q&A, as it is much appreciated. If one has...

https://connect.mayoclinic.org/comment/1308381/

Discussion: Pancreatic Cancer Q&A with Dr. Stauffer, Mayo Surgeon: Archive

Support Group: Pancreatic Cancer

Posted: May 20, 2025

full of gas i have net of small bowel tumor was removed 5/22, i have 3...

https://connect.mayoclinic.org/comment/789668/

Discussion: What helps with gas and pain after surgery?

Support Group: Cancer: Managing Symptoms

Posted: Dec 28, 2022

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

Hi Cindy, As encouragement…I had a lime size tumor removed from my mid gut (terminal ileum)...

https://connect.mayoclinic.org/comment/1203247/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 3, 2025

The explanation I got, is once you are stage 4, targeted therapies such as surgery and...

https://connect.mayoclinic.org/comment/1487483/

Discussion: Tips about preparing for my second opinion appointment at Mayo

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 20 3:25pm

I don’t want to scare you, but it was painful 5 hour surgery. I was hospitalized...

https://connect.mayoclinic.org/comment/1309905/

Discussion: Primary Small Bowel NETS, Liver Mets

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 21, 2025

Dealing with Nets! Wow we are all different I learned as much as I could about...

https://connect.mayoclinic.org/comment/1190887/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 15, 2024

Hello @dak10, I so appreciate hearing from you again with some more information on your journey...

https://connect.mayoclinic.org/comment/827367/

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 17, 2023

Hi, I SO feel for your partner! I have primary pancreatic net, liver mets. and had...

https://connect.mayoclinic.org/comment/1294137/

Discussion: Lanreotide side effects: diarrhea constipation, what to do?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 1, 2025

I was diagnosed with net cancer December 2020. Originated in small intestines and spread to liver....

https://connect.mayoclinic.org/comment/856717/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 8, 2023

@mlassen1 Hello and welcome to Mayo Connect. I’ve been going to Mayo Jacksonville since 2017, started...

https://connect.mayoclinic.org/comment/1481778/

Discussion: Tips about preparing for my second opinion appointment at Mayo

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 13 10:50pm

@dadcue i would do the scan so if you actually do have a net/s you can...

https://connect.mayoclinic.org/comment/1523385/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 9 3:13pm

I also have NET pancreas to liver and type 2 diabetes. I am taking CAPTEM. I...

https://connect.mayoclinic.org/comment/836209/

Discussion: Anyone dealing with Carcinoid NETs with Diabetes?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 2, 2023

I would definitely see a NET specialist, I have carcinoid syndrome , NET’s started in my...

https://connect.mayoclinic.org/comment/1294461/

Discussion: What should I do? Carcinoid symptoms but no answers.

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 1, 2025

Thanks very: much for sharing. Were you taking any medications prior to Lanreotide three months ago?...

https://connect.mayoclinic.org/comment/1171155/

Discussion: Experience w/ watch and wait approach for metastatic liver tumor

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 10, 2024

When is your surgery? Or have you already had your surgery? If so, how did it...

https://connect.mayoclinic.org/comment/1122974/

Discussion: Pancreatic NETs: Looking to connect with anyone with insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 13, 2024

I was on CAPTEM for 13 cycles. My pnet and largest liver lesion shrunk in half....

https://connect.mayoclinic.org/comment/1358810/

Discussion: Neuroendocrine tumor pancreatic tail

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 28, 2025

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