Neuroendocrine Tumors (NETs) Support Group

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Comments (881)

Hello I have a couple of NETs tumors. One in the lung one in the mediastinum....

https://connect.mayoclinic.org/comment/1198328/

Discussion: Any advice for someone recently diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 27, 2024

Hello @sylvian and welcome to the NETs discussion on Mayo Clinic Connect. As you can see,...

https://connect.mayoclinic.org/comment/827446/

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 17, 2023

Hi @kim2022 I see this post is from November of last year. Hope all is going...

https://connect.mayoclinic.org/comment/807987/

Discussion: Stage 4, High-Grade Neuroendocrine carcinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 8, 2023

Hi, thank you! Yes, I do intend to address all my side effect issues with the...

https://connect.mayoclinic.org/comment/1103497/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 11, 2024

Hi @dipnech67 I would be happy to speak with you. I just sent you a private...

https://connect.mayoclinic.org/comment/1055386/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 22, 2024

Are you taking a treatment? So interesting, these various symptoms, like GERD! I had it for...

https://connect.mayoclinic.org/comment/1330063/

Discussion: DIPNCEH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2025

Hi Rose830, I had to look up Merkel Cell Cancinoma as I'm not familiar with it....

https://connect.mayoclinic.org/comment/844303/

Discussion: What do I need to know about NETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 17, 2023

@jessie1990 I was just going to tell you everything Colleen is saying. Everything they are doing...

https://connect.mayoclinic.org/comment/1455754/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 8, 2025

Hi @ce1b I take Octreotide (similar to lanreotide) injections every 4 weeks for my lung NETs....

https://connect.mayoclinic.org/comment/896824/

Discussion: How long do I wait between injections and PET scans.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 16, 2023

My suggestions are very similar to the other comments. One thing I did to help was...

https://connect.mayoclinic.org/comment/990161/

Discussion: Questions I should ask before surgery for Lung NETs?

Support Group: Lung Cancer

Posted: Jan 2, 2024

Hello, my Mom is currently on a clinical trial involving a cancer peptide vaccine and nivo...

https://connect.mayoclinic.org/comment/873518/

Discussion: Immunotherapy (Ipilimumab & Nivolumab) for NETs: Any experiences?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 6, 2023

What I did was to do a deep dive into the process. First I set my...

https://connect.mayoclinic.org/comment/1000033/

Discussion: Possible NET: Waiting for the endo appointment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 19, 2024

Hi tatteesmom3, are you seeing a NETS (neuroendocrine tumor) multidisiciplinary team or just a local oncologist...

https://connect.mayoclinic.org/comment/844936/

Discussion: What do I need to know about NETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 18, 2023

I, too, have high grade (2/3) metastatic NETs—liver, pancreas, lungs, bone, adrenal gland, parotid gland. I...

https://connect.mayoclinic.org/comment/811356/

Discussion: Lost with no confirmation of NETs origin: Innumerable liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 14, 2023

So sorry to hear about all your issues. I have DIPNECH also, dx’d after my RML...

https://connect.mayoclinic.org/comment/1222859/

Discussion: Already on oxygen - diagnosed with DIPNECH: What happens next?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 27, 2025

Thank You Colleen, It was also a zoom meeting, so that didn't help......we live 4 and...

https://connect.mayoclinic.org/comment/671245/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 15, 2022

Hello! Very naive here about where I have been and how concerned I should be. Maybe...

https://connect.mayoclinic.org/comment/758149/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 6, 2022

I have LiverNET and receive a CT and PET scan every 90 days. Here is some...

https://connect.mayoclinic.org/comment/1218736/

Discussion: MRI or CatScan as follow up imaging for metastatic liver tumor?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 22, 2025

I'm not sure if this is where I should pose my question, but will give it...

https://connect.mayoclinic.org/comment/1277514/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 9, 2025

My NETs was found during an episode of jaundice, where a bile duct was blocked by...

https://connect.mayoclinic.org/comment/755807/

Discussion: Need help with diet after a hemicolectomy....

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 1, 2022