Neuroendocrine Tumors (NETs) Support Group

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Hi @breck Thank you for your response. Sorry this is so scary and you have breathing...

https://connect.mayoclinic.org/comment/1170238/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 8, 2024

Comment

Thanks for your comment. I have since learned that non functioning (no symptom) tumors do not...

https://connect.mayoclinic.org/comment/1166857/

Discussion: Dotatate lights only in liver, but report says metastatic to liver?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 2, 2024

Comment

Welcome to the NET site! Hope you find the group helpful and supportive. I don’t have...

https://connect.mayoclinic.org/comment/851281/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 29, 2023

Comment

I just realized that I didn't respond to you but some days I am fatigue and...

https://connect.mayoclinic.org/comment/713907/

Discussion: Any NET patients from NYC

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 3, 2022

Comment

I was diagnosed in March 2018 with NETs in multiple locations after having a blockage in...

https://connect.mayoclinic.org/comment/807089/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 6, 2023

Comment

I am glad that it has helped. It is very confusing. I got diagnosed in 8/22....

https://connect.mayoclinic.org/comment/1386006/

Discussion: I saw the surgeon. More confused than ever.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 3, 2025

Comment

I also have tumor metastases on my spine and ribs, unknown primary. Diagnosed Jan 2020, multiple...

https://connect.mayoclinic.org/comment/810800/

Discussion: Anyone have a neuroendocrine tumor (NET) in the spine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 13, 2023

Comment

I am struggling with exhaustion and pain in my legs as well as a weight gain...

https://connect.mayoclinic.org/comment/1249794/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 3, 2025

Comment

Hi @jan355 I'm so sorry to hear about your oxygen issues and for so many years....

https://connect.mayoclinic.org/comment/1220927/

Discussion: Already on oxygen - diagnosed with DIPNECH: What happens next?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 24, 2025

Comment

You definitely need to get a second opinion from a NETs specialist. Other types of lung...

https://connect.mayoclinic.org/comment/1242687/

Discussion: DIPNECH diagnosis. Has anyone had radiation?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 22, 2025

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