Neuroendocrine Tumors (NETs) Support Group

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Comments (2,364)

It’s so hard to generalize one experience to others except as an example. In 2014-15, I...

https://connect.mayoclinic.org/comment/1001387/

Discussion: Statistics on progression free survival while on SSA / Lanreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 21, 2024

I am 69 years old and am diagnosed with multiple liver metastasis from lung carcinoid tumor....

https://connect.mayoclinic.org/comment/825019/

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 12, 2023

Hello @mukul123 and welcome to Mayo Connect. I see that you are looking for direction for...

https://connect.mayoclinic.org/comment/786179/

Discussion: Welcome to the NETs Group! Come say hi.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 18, 2022

@hopeful33250 Good to hear your pancreatic cyst story. Yes, once you have cancer you can’t help...

https://connect.mayoclinic.org/comment/955378/

Discussion: Anyone have a small pancreatic IPMN cyst that turned out to be cancer?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 28, 2023

I had a small bowel resection in 2007 because my carcinoid tumor had grown around several...

https://connect.mayoclinic.org/comment/874036/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 7, 2023

Hello, I am new to this forum and would like to know the following if it...

https://connect.mayoclinic.org/comment/640890/

Discussion: Carcinoid cancer: Want to meet others

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 30, 2021

You are on the right track by finding NET specialist! Relax, and give him your support!...

https://connect.mayoclinic.org/comment/1291405/

Discussion: Son, 48 diagnosed with PNET pancreatic cancer 8cm tail & spleen

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 27, 2025

Hang in there! I am having my 7th Lan injection tomorrow. Had distal pancreatectomy with spleen,...

https://connect.mayoclinic.org/comment/935344/

Discussion: Carcinoid syndrome; NET not found

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 24, 2023

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

@tomrennie I was diagnosed in January of 2024. Unfortunately, since I had very few symptoms the...

https://connect.mayoclinic.org/comment/1488216/

Discussion: Reccurrenct NETs and side effects of cap/tem

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 21 2:25pm

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

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

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