Neuroendocrine Tumors (NETs) Support Group

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@hopeful33250 My pulmonologist was the one who let me know NETs specialists existed. He recommended one...

https://connect.mayoclinic.org/comment/1416257/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 15, 2025

Comment

So have you considered octreotide injections for the DIPNECH? My allergy issues are respiratory. I was...

https://connect.mayoclinic.org/comment/1205603/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 6, 2025

Comment

This is my opinion with the facts for myself. I started octreotide twelve and a half...

https://connect.mayoclinic.org/comment/1162233/

Discussion: NET on liver: Question about treatments when no symptoms

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 24, 2024

Comment

I was diagnosed with Neuroendocrine tumors in my liver and small intestines back in December 2022....

https://connect.mayoclinic.org/comment/870969/

Discussion: Neuroendocrine tumor and carcinoid tumor

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 2, 2023

Comment

I was diagnosed 5 years ago Have multiple surgeries procedures and treatments done My primary had...

https://connect.mayoclinic.org/comment/1266481/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2025

Comment

I was told when we destroyed my largest carcinoid tumor 2.6 cm with microwave ablation that...

https://connect.mayoclinic.org/comment/1108812/

Discussion: DIPNECH (diffuse idiopathic pulmonary neuroendocrine cell hyperplasia)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2024

Comment

I am so sorry to hear what your husband is going through Mine is similar no...

https://connect.mayoclinic.org/comment/1386167/

Discussion: Stage 4 Carcinoid tumor: What treatments have you had?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 3, 2025

Comment

Hello @wordnoid I get the octreotide shots every 28 days I am a NED but I...

https://connect.mayoclinic.org/comment/134518/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 20, 2017

Comment

Hi, another DIPNECH ‘club’ member here. My diagnosis was late 2023 and I had an ablation...

https://connect.mayoclinic.org/comment/1392689/

Discussion: Biopsy showed DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 13, 2025

Comment

I'm in the same boat. Well differentiated, had small bowel resection, still have a mass and...

https://connect.mayoclinic.org/comment/1236191/

Discussion: I recently had surgery to remove NET in small intestine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 13, 2025

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