Neuroendocrine Tumors (NETs) Support Group

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Comments (1,498)

I'm exactly your age and my situation appears to be exactly like yours. But my journey...

https://connect.mayoclinic.org/comment/941331/

Discussion: 4 treatment options from my doctor, which one should I start with?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 3, 2023

Hi Mark, regarding your question about the Chromogranin A (CGA) test, I have found some information,...

https://connect.mayoclinic.org/comment/745379/

Discussion: Recommendation for Seattle Cancer Care Alliance MDs Treating NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 4, 2022

Hello everyone!! I am new to the group!! Have been on my cancer journey since April...

https://connect.mayoclinic.org/comment/755415/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 29, 2022

Thanks for all of that information, @gapsc I know so many NET patients who were misdiagnosed...

https://connect.mayoclinic.org/comment/134270/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 11, 2018

Hi billyfeet, I had two NETs on the tail of my pancreas both over 2 cms....

https://connect.mayoclinic.org/comment/842530/

Discussion: Has anyone chosen the Watch and Wait and regretted that choice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 13, 2023

@markbrinkley Sure, I have had surgeries for all three NETs with no other treatment beyond the...

https://connect.mayoclinic.org/comment/234458/

Discussion: New to Mayo: MEN1 with duodenum NET G1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 12, 2018

Hello Mollie, Back in 2008 I was diagnosed with carcinoid having a mid-gut primary with liver...

https://connect.mayoclinic.org/comment/160169/

Discussion: Carcinoid Cancer of the Liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 18, 2017

Hi vtn So I didn’t have the gallium first. So when they did the first recheck...

https://connect.mayoclinic.org/comment/858909/

Discussion: Just diagnosed with PNET: Any thoughts on watch & wait approach?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 12, 2023

Hi Teresa, Thank you for sharing your story and suggestions. I'm assuming your surgeries were from...

https://connect.mayoclinic.org/comment/762620/

Discussion: Prognosis for Metastasized NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 18, 2022

@colleenyoung Maybe you will want to cross post this to other groups. My husband has fought...

https://connect.mayoclinic.org/comment/196569/

Discussion: Overmedication with cancer and other conditions

Support Group: Head & Neck Cancer

Posted: Apr 19, 2018

Hello, My dad was recently diagnosed with a GI NET. We live in the US ....

https://connect.mayoclinic.org/comment/1010196/

Discussion: GI NET attached to pancreas supposedly non-producing

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 5 2:26pm

I just had my what has become a yearly as opposed to every three to six...

https://connect.mayoclinic.org/comment/854136/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 4, 2023

I got a second opinion from MD Anderson's Neuroendocrine research doctors who also recommended Everolimus. My...

https://connect.mayoclinic.org/comment/1118230/

Discussion: Everolimus for multiple Neuroendocrine tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 5 10:05am

Hello @lovemyfamtopieces72 and welcome to the NETs Support Group on Mayo Connect. I see that two...

https://connect.mayoclinic.org/comment/1112748/

Discussion: GI Net stage 4 advanced: Is it incurable?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 27 11:51am

I was diagnosed almost 2 years ago with NET primary pancreas that metastasized to liver(over 100)...

https://connect.mayoclinic.org/comment/859321/

Discussion: TACE Procedure: What is it like?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 13, 2023

Welcome to the group! Insulinoma diagnosis can be tricky. In brief, I was diagnosed in 2015...

https://connect.mayoclinic.org/comment/889522/

Discussion: NET - Insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 3, 2023

Hello Audra, Let me introduce myself....I am Mary, and was diagnosed with Carcinoid Syndrome (with liver...

https://connect.mayoclinic.org/comment/184521/

Discussion: Carcinoid Cancer and working

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 14, 2018

Hello @jatx25 and welcome to Connect and the "NET world" as you so aptly describe it....

https://connect.mayoclinic.org/comment/753020/

Discussion: Questions on Recurrence & Likelihood of Multiple NETs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 23, 2022

Yes I have had one discovered about two years ago with a heart MRI. It was...

https://connect.mayoclinic.org/comment/907604/

Discussion: Has anyone had NETs metastasized to heart?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 4, 2023

Hello @gtassithomas I see that this is your first post in the NET discussion group. I...

https://connect.mayoclinic.org/comment/260957/

Discussion: Carcinoid syndrome symptoms

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 2, 2019