Neuroendocrine Tumors (NETs) Support Group

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Comment

Hi @mimi206 I have DIPNECH and lung NETs (typical carcinoids) with 50+ nodules so we are...

https://connect.mayoclinic.org/comment/1250591/

Discussion: DIPNECH diagnosis. Has anyone had radiation?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 4, 2025

Comment

Welcome to the group. I have had success controlling my blood sugar with Octreotide (Sandostatin LAR...

https://connect.mayoclinic.org/comment/1180040/

Discussion: Neuroendocrine insulinoma and MDS

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 26, 2024

Comment

Yes, absolutely seek out a multidisciplinary NETS team. I see one at UCLA and they work...

https://connect.mayoclinic.org/comment/861475/

Discussion: Should I see a NET specialist?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 17, 2023

Comment

Hello @sophiarose Personally, I have never taken either octreotide or lanreotide so I do not know...

https://connect.mayoclinic.org/comment/727713/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 17, 2022

Comment

I have been on Octreotide shots for several years and also took Afinitor for a couple...

https://connect.mayoclinic.org/comment/710265/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 21, 2022

Comment

Hi,Sorry to hear about your diagnosis. One thing doctors and research haveshown is that most neuroendicrine...

https://connect.mayoclinic.org/comment/90131/

Discussion: I have recently been diagnosed with my third neuroendocrine tumor

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 10, 2016

Comment

I had some small lung nodules noticed on a scan 2 years ago and was being...

https://connect.mayoclinic.org/comment/831653/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2023

Comment

@gig666 How did your PET scan turn out? Was it a DOTATATE scan specifically for NETs?...

https://connect.mayoclinic.org/comment/1033637/

Discussion: High risk surgery. Is it worth it?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 14, 2024

Comment

Hopeful. I was diagnosed with Islet Cell Cancer, a neuroendricine adenoma carcinoma back in July of...

https://connect.mayoclinic.org/comment/90122/

Discussion: I have recently been diagnosed with my third neuroendocrine tumor

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 31, 2016

Comment

Have non-operable S4 primary tumor in Mesentery, too close to liver blood supply. Had total hysterectomy...

https://connect.mayoclinic.org/comment/1443174/

Discussion: S4, G2 NETS in mesentery. Declined Exploratory Surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 20, 2025

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