Neuroendocrine Tumors (NETs) Support Group

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Comments (878)

Is there a group for nets in the lung? Surgeon stated that treatment for a 23...

https://connect.mayoclinic.org/comment/1415764/

Discussion: I have a neuroendocrine tumour in the small bowel and liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 14, 2025

Thank you so much for this wealth of information. I do have respiratory issues. However, since...

https://connect.mayoclinic.org/comment/1532989/

Discussion: DIPNECH dr in GA- Atlanta

Support Group: Neuroendocrine Tumors (NETs)

Posted: 5 days ago

I found out today that I have 2 NET’s in my lung. Found inadvertently while scanning...

https://connect.mayoclinic.org/comment/816366/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 23, 2023

Yes, I mean Lung Atypical NET

https://connect.mayoclinic.org/comment/938969/

Discussion: Atypical Lung NET treated with radiation: What was your outcome?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 29, 2023

@tomrennie so you don't have lung carcinoids

https://connect.mayoclinic.org/comment/1454578/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 6, 2025

Most NETs specialists seem to specialize in GI NETs rather than lung NETs. Handled differently. Not...

https://connect.mayoclinic.org/comment/1532444/

Discussion: DIPNECH dr in GA- Atlanta

Support Group: Neuroendocrine Tumors (NETs)

Posted: 6 days ago

@colleenyoung Hi Colleen, I'm so glad you posted this article. Believe it or not, it was...

https://connect.mayoclinic.org/comment/1055394/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 22, 2024

Hi @dougmck Are your lung nodules typical carcinoids, other lung cancer or small benign nodules? DIPNECH?...

https://connect.mayoclinic.org/comment/1206138/

Discussion: Concerns after lobectomy for carcinoid tumor in lung

Support Group: Lung Cancer

Posted: Jan 7, 2025

Yes, I'm also glad the surgeon you saw is so experienced with NET lung tumors. Experience...

https://connect.mayoclinic.org/comment/913585/

Discussion: How do I know somatostatin is in my system?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 15, 2023

@nannybb yes my lung is still partially callapsed because the tumor was totally blocking my tube...

https://connect.mayoclinic.org/comment/1436467/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 12, 2025

@kjstein Hello @kjstein: Thank you for sharing your experience with Lutathera and what to expect, including...

https://connect.mayoclinic.org/comment/1534540/

Discussion: 4 treatment options from my doctor, which one should I start with?

Support Group: Neuroendocrine Tumors (NETs)

Posted: 3 days ago

Hi @amd12, welcome. You've certainly come to the right place. I can imagine that you are...

https://connect.mayoclinic.org/comment/657244/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 24, 2021

Has anyone with Lung NETS suffer from pain through to back under shoulder blades? Can only...

https://connect.mayoclinic.org/comment/1057873/

Discussion: Lung nodule could be slow growing carcinoid: Watch and wait is scary

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 26, 2024

Hello @dragonfly214 and welcome to Mayo Connect. I understand from your post that this is a...

https://connect.mayoclinic.org/comment/1394247/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 16, 2025

Hi guys is it normal to have lung pain wit typical carcinoid

https://connect.mayoclinic.org/comment/1434939/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 10, 2025

@californiazebra my first lung specialist done a biopsy that was benign then he sent me to...

https://connect.mayoclinic.org/comment/1427029/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 30, 2025

Hello @rkruzeski and welcome to Mayo Clinic Connect. I am glad you found this forum and...

https://connect.mayoclinic.org/comment/1524001/

Discussion: Anyone have experience with cabozantinib (Cabometyx)?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 10 12:52pm

@tomrennie I will have surgical debulking guided by ultrasound, The problem is one of the tumors...

https://connect.mayoclinic.org/comment/1524255/

Discussion: Previous heart surgery & risks of surgery to remove lung net

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 10 8:11pm

@annie12345 After you read thru all the posts, let me know what questions you still have....

https://connect.mayoclinic.org/comment/1329039/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 17, 2025

No. He has pnets. I know lung nets are a bit of different animal. In addition...

https://connect.mayoclinic.org/comment/1329069/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 17, 2025

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