Neuroendocrine Tumors (NETs) Support Group

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Comments (368)

@splendrous: I was in this situation last June (2024) - small intestine/stomach primary with liver mets…...

https://connect.mayoclinic.org/comment/1364348/

Discussion: Interested in your experience with treatments of PRRT vs surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 5, 2025

mgb20, Reading your post was like reading my story - 5 years ago (3/18) I, too,...

https://connect.mayoclinic.org/comment/830736/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 23, 2023

I wish I had an answer for you, but I doubt that even your doctor can...

https://connect.mayoclinic.org/comment/867084/

Discussion: Life expectancy with NETs and lifetyle as it progresses

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 26, 2023

Hi, I am a 65-year-old woman. I was having these horrible stomachaches. I finally went to...

https://connect.mayoclinic.org/comment/1434058/

Discussion: New NET in liver and small intestine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 8, 2025

@jutebox42 & @hopeful33250 You asked about my Neuroendocrine Cancer diagnosis - dx October 2021 biopsy in...

https://connect.mayoclinic.org/comment/1251442/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 6, 2025

@rose2525: I feel your frustration! NETS primary tumors tend to be illusive and difficult to discover....

https://connect.mayoclinic.org/comment/1435655/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 10, 2025

I get the lanreotide injection every three weeks. I have GPNET grade 2 resection from small...

https://connect.mayoclinic.org/comment/1280086/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 12, 2025

Nana120, welcome to the Mayo Connect online support group for Neuroendocrine tumor patients. I hope you’ll...

https://connect.mayoclinic.org/comment/898735/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 19, 2023

Welcome Iniemczura to the Mayo online support group for neuroendocrine tumors. I hope you find this...

https://connect.mayoclinic.org/comment/894050/

Discussion: More info on gastric NET w/liver mets and progression of symptoms

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 11, 2023

@helloitsme, Something you said in your initial post just struck a chord with me, and that...

https://connect.mayoclinic.org/comment/854505/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 4, 2023

ricki8, I haven't been part of this conversation, but decided to join tonight. I went to...

https://connect.mayoclinic.org/comment/1009722/

Discussion: Update: Lutethera treatment is over

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 4, 2024

Re: "come say hi". Hi, I am new here. I had an appendiceal NET removed in...

https://connect.mayoclinic.org/comment/800545/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 23, 2023

Welcome @helloitsme, so glad you reached out to this group. I’m also glad to hear you’re...

https://connect.mayoclinic.org/comment/851440/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 29, 2023

Hi, Mark, I was diagnosed in 2007 with a carcinoid tumor that had wrapped around several...

https://connect.mayoclinic.org/comment/809267/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 10, 2023

Pippa05, I am so very sorry to hear about your struggles. And I appreciate and can...

https://connect.mayoclinic.org/comment/897706/

Discussion: NET symptoms despite follow-up lab work ok

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 17, 2023

I had emergency surgery this past September after a Laparoscopic removal of a 6.5 m. cyst...

https://connect.mayoclinic.org/comment/1438921/

Discussion: How do I eat after digestive tract surgery?

Support Group: Digestive Health

Posted: Nov 14, 2025

@sop, I’m sorry to hear that your husband has been diagnosed with these rare tumors, but...

https://connect.mayoclinic.org/comment/943323/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 6, 2023

Oops I forgot to repost my thread about my journey before sending the last message to...

https://connect.mayoclinic.org/comment/1239033/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 17, 2025

The Whipple procedure involves the resection of the head of the pancreas. This section is where...

https://connect.mayoclinic.org/comment/985469/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 23, 2023

He was diagnosed in December 2019, had surgery in March 2020, I think the first six...

https://connect.mayoclinic.org/comment/899229/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2023

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