Neuroendocrine Tumors (NETs) Support Group

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Comments (461)

Wow hats off to you on your journey what an experience you learned from and handled...

https://connect.mayoclinic.org/comment/821372/

Discussion: NETs: Competing Pathologies--how to sort it all out?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 5, 2023

I think you hit the nail on the head with the workaround. That being said, I...

https://connect.mayoclinic.org/comment/1126890/

Discussion: Lanreotide eventually becomes less effective, why?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 19, 2024

@kdubbs I have both DIPNECH and lung NETs. Your best bet finding someone to treat DIPNECH...

https://connect.mayoclinic.org/comment/1532862/

Discussion: DIPNECH dr in GA- Atlanta

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 22 12:39pm

@mcohan Most doctors, even radiologists, pulmonologists and oncologists haven't even heard of DIPNECH. I recently went...

https://connect.mayoclinic.org/comment/965599/

Discussion: Anyone had surgery to remove typical carcinoids of the lung?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 16, 2023

I have GERD too. Before my DIPNECH and lung NETs was diagnosed even though we knew...

https://connect.mayoclinic.org/comment/1329913/

Discussion: DIPNCEH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2025

Mel, I responded to you in another discussion but thought I might answer your question here...

https://connect.mayoclinic.org/comment/753729/

Discussion: Liver mets mistaken as hemangioma or harmatoma on MRI

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 25, 2022

In my experience every time I read the latest scans summary, it's a day of new...

https://connect.mayoclinic.org/comment/1219632/

Discussion: Liver masses found on CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 23, 2025

This is my 6 years trying to get information for having Neuroendocrine Cancer, lung Nets! I...

https://connect.mayoclinic.org/comment/1203278/

Discussion: What does my dentist need to know about my NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 3, 2025

Wow @lastround that's terrible what the first two doctors told you. Glad you saw a third!...

https://connect.mayoclinic.org/comment/861458/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 17, 2023

Now I am back with some updates. Since Lutathera treatment in 2023, I had 15 fractions...

https://connect.mayoclinic.org/comment/1226272/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 31, 2025

It can sure be a frustrating journey to diagnosis, can’t it? Glad they figured yours out...

https://connect.mayoclinic.org/comment/1171342/

Discussion: How many doctors did you see to get to your NETS diagnosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 10, 2024

Hello @jessie1990, and welcome to the NETs support group on Mayo Clinic Connect. Carcinoid tumors are...

https://connect.mayoclinic.org/comment/1426976/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 30, 2025

Hello @gesmone1 and welcome to the NET support group on Mayo Connect. I'm glad that you...

https://connect.mayoclinic.org/comment/939679/

Discussion: Atypical Lung NET treated with radiation: What was your outcome?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 1, 2023

@sophiarose I’ve been taking octreotide injections for lung NETs and DIPNECH for 3.5 years and it...

https://connect.mayoclinic.org/comment/1181820/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 29, 2024

Hello @cgshields1129 and welcome to the NETs support group on Mayo Connect. It sounds as if...

https://connect.mayoclinic.org/comment/1227266/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 1, 2025

I’ve been taking octreotide injections for over 3 years for lung NETs. Cause fatigue especially the...

https://connect.mayoclinic.org/comment/1098642/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 3, 2024

@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

Hello @kdubbs I see that @californiazebra and @jlsgt have already introduced themselves to you and shared...

https://connect.mayoclinic.org/comment/1392077/

Discussion: Biopsy showed DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 12, 2025

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

@gig666, great question. @jlsgt is right that the term carcinoid is out of favor. Here's some...

https://connect.mayoclinic.org/comment/1235902/

Discussion: Carcinoid NET changed to carcinoma: What's the difference?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 13, 2025

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