Neuroendocrine Tumors (NETs) Support Group

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Comments (653)

Hi thank you for your reply. I am in Australia. What are the side effects you...

https://connect.mayoclinic.org/comment/1205619/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 6, 2025

Splendrous, I've been on Octrotide injections monthly since April 2018, a month after my first surgery...

https://connect.mayoclinic.org/comment/1208675/

Discussion: Clay colored bowels & diarrhea side effects with Octreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 10, 2025

My husband was diagnosed with GI tract stage 4 Neuroendocrine carcinoid tumor March,2022. He had surgery...

https://connect.mayoclinic.org/comment/1048670/

Discussion: Questions Regarding Results after PRRT Treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 10, 2024

I’ve been receiving Lanreotide and now Octreotide injections for several years. Levels of pain and potential...

https://connect.mayoclinic.org/comment/881564/

Discussion: Advice for making monthly injections more tolerable

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 19, 2023

I want to report in on my current situation. My GP referred me to a local...

https://connect.mayoclinic.org/comment/808662/

Discussion: Long Time Survivor With Concerns re Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 9, 2023

I also concur with all of the above responses; I’m on year 3… Mine started as...

https://connect.mayoclinic.org/comment/1369496/

Discussion: Neuroendocrine Tumor

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 12, 2025

@panorman3 , I, too, have an inoperable tumor. It’s in my stomach and was found 7...

https://connect.mayoclinic.org/comment/1260726/

Discussion: Diagnosing small bowel NETs with carcinoid syndrome

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 17, 2025

Insulinoma causes excessive release of insulin and results in hypoglycemia. My husband is not a candidate...

https://connect.mayoclinic.org/comment/897218/

Discussion: NET - Insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 17, 2023

The Buzzy 4 Shots sounds like a clever idea. It sounds like it serves as a...

https://connect.mayoclinic.org/comment/880466/

Discussion: Advice for making monthly injections more tolerable

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2023

Hi I was diagnosed last July with an insulinoma,tumor in my pancreas and liver lesions. I...

https://connect.mayoclinic.org/comment/831185/

Discussion: Neuroendocrine Insulinoma: Is treatment different for this type?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 24, 2023

@spaztwobe I feel your frustration. It took 12 years to correctly diagnose my lung NETs and...

https://connect.mayoclinic.org/comment/1315349/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 28, 2025

Hi Neuroendocrine Group, I am Neuroendocrine Breast Cancer (rare) with mets in liver and bones. It...

https://connect.mayoclinic.org/comment/766898/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 29, 2022

I also have insulinomas. . . Diagnosed originally in 2015 with 2 tumors in the pancreas,...

https://connect.mayoclinic.org/comment/867769/

Discussion: Life expectancy with NETs and lifetyle as it progresses

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 27, 2023

just facts here and you will have to decide for yourself--- and this was ten years...

https://connect.mayoclinic.org/comment/1030398/

Discussion: High risk surgery. Is it worth it?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 9, 2024

Hi Colleen, Thanks for your response to my post. Thus far my response to the Octreotide...

https://connect.mayoclinic.org/comment/669805/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 10, 2022

I have this horrible itching also. My scalp is the worst. Top of my thighs above...

https://connect.mayoclinic.org/comment/1384318/

Discussion: Carcinoid syndrome symptoms

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 1, 2025

The problem with blanket statements like your doctor told is that we all have different types...

https://connect.mayoclinic.org/comment/861136/

Discussion: Dying from car accident can cause death more so this cancer

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 17, 2023

I’m glad your allergies have improved and general wellness. I did allergy testing about 25 years...

https://connect.mayoclinic.org/comment/1330239/

Discussion: DIPNCEH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2025

@pontiac - thanks for your post! I completely understand your frustrations! After my Whipple procedure in...

https://connect.mayoclinic.org/comment/831222/

Discussion: Neuroendocrine Insulinoma: Is treatment different for this type?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 24, 2023

@bnjncrew - welcome to the NET insulinoma group. There are several on or around this page...

https://connect.mayoclinic.org/comment/831029/

Discussion: Neuroendocrine Insulinoma: Is treatment different for this type?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 24, 2023

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