Neuroendocrine Tumors (NETs) Support Group

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Comment

Mine was found incidentally on a coronary CT, then pet scan showed malignancy in RML, along...

https://connect.mayoclinic.org/comment/1205379/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 6, 2025

Comment

@jhhaas I’m curious. You listed a lot of symptoms but said you haven’t needed treatment shots...

https://connect.mayoclinic.org/comment/1205397/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 6, 2025

Comment

Hi, your story sounds like mine. I had right middle lobe removed October 2023 due to...

https://connect.mayoclinic.org/comment/1329790/

Discussion: DIPNCEH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2025

Comment

@cmc188 I don't blame you for not wanting side effects without any benefit. I have had...

https://connect.mayoclinic.org/comment/1206123/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 7, 2025

Comment

Hi @blm1024 Welcome! Glad you’re in the other side of surgery. I have typical lung carcinoids...

https://connect.mayoclinic.org/comment/1350349/

Discussion: Carcinoid cancer: Want to meet others

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 17, 2025

Comment

@hopeful33250 Hi Teresa, You are correct that they did not suggest surgery for me. The reason...

https://connect.mayoclinic.org/comment/861413/

Discussion: Net unknown cause of breathing problems

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 17, 2023

Comment

@tomrennie I thought it was you 🙂 This is going to be a bit long. Sorry...

https://connect.mayoclinic.org/comment/1454845/

Discussion: My doctors know nothing

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 6, 2025

Comment

Sorry to hear about your NETS diagnosis. Check out LACNETS.org and you will find so much...

https://connect.mayoclinic.org/comment/842248/

Discussion: What do I need to know about NETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 12, 2023

Comment

@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

Comment

Hi! I was recently… finally diagnosed with DIPNECH. I am 69 and probably have had this...

https://connect.mayoclinic.org/comment/1173598/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 14, 2024

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