Neuroendocrine Tumors (NETs) Support Group

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Comments (421)

My chemotherapy was difficult to deal with, it wasn’t immediate but accumulative effects were challenging. Fatigue,...

https://connect.mayoclinic.org/comment/1025991/

Discussion: Atypical pulmonary carcinoid

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 2, 2024

Hello @grec and welcome to the NETs support group on Mayo Connect. It is a good...

https://connect.mayoclinic.org/comment/1004066/

Discussion: Neuroendocrine cells in Breast and Lungs DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 26, 2024

Hello, I have a stage 3 lung NET. I found a lot of good information on...

https://connect.mayoclinic.org/comment/998253/

Discussion: Statistics on progression free survival while on SSA / Lanreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 16, 2024

I have a Lung Net that is well defined, grade one. It is in my middle...

https://connect.mayoclinic.org/comment/941988/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 4, 2023

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 all, I’m new to this forum and this condition. Started with GI pain and inconsistent...

https://connect.mayoclinic.org/comment/876745/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 11, 2023

Hello @sun56 and welcome to the NETs discussion on Mayo Clinic Connect. I can understand what...

https://connect.mayoclinic.org/comment/831612/

Discussion: Lung nodule could be slow growing carcinoid: Watch and wait is scary

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2023

Hi Larenn, May I ask how large your lung tumor and subcutaneous nodule were? I have...

https://connect.mayoclinic.org/comment/825153/

Discussion: Stage 4 Carcinoid tumor: What treatments have you had?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 12, 2023

@aliatl Yes they gived same all three medicines, 6 times x 3 days. After 2. chemotherapy...

https://connect.mayoclinic.org/comment/823442/

Discussion: NET lung with Liver Metastasis (stage 4)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 9, 2023

Hi @shella, I wanted to make sure you saw the helpful post from @merpreb. I have...

https://connect.mayoclinic.org/comment/815207/

Discussion: What tumor size is typical for removing part of the lung?

Support Group: Lung Cancer

Posted: Feb 21, 2023

@tufan HI Tufan, I'm sorry to hear that. I hope soon you start getting good treatment...

https://connect.mayoclinic.org/comment/803389/

Discussion: Neuroendocrine Lung stage 4B with metastasis in liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 29, 2023

Hello @elkeann and welcome to the NETs discussion on Mayo Connect. Facial flushing is often a...

https://connect.mayoclinic.org/comment/802512/

Discussion: Neck and face red flushing

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 27, 2023

Greetings....I am still standing and living a normal life at 85 with my disease in the...

https://connect.mayoclinic.org/comment/801669/

Discussion: Neuroendocrine Lung stage 4B with metastasis in liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 25, 2023

Hi my mom has NET in her uterus that also mastiszed to lungs. I am sitting...

https://connect.mayoclinic.org/comment/799134/

Discussion: Neuroendocrine tumor: What tests are used for diagnosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 20, 2023

Hello @amd12 You mentioned in your last post that you would be having another scan to...

https://connect.mayoclinic.org/comment/792439/

Discussion: Pancreatic NF-NET stable since 2005 - surgery or not?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 4, 2023

Thank you for sharing your difficult journey. You seem to be in the stage of diagnosis...

https://connect.mayoclinic.org/comment/756676/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 3, 2022

Hello All: For those of you who have had surgery for NETs in the thoracic area...

https://connect.mayoclinic.org/comment/631580/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 31, 2021

@jessie1990 Keep crying then. You probably need it. I was diagnosed with stage 4 pancreatic NETs...

https://connect.mayoclinic.org/comment/1454550/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 6, 2025

Hello @kiholt, and welcome to the NETs support group on Mayo Clinic Connect. I appreciate you...

https://connect.mayoclinic.org/comment/1436094/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 11, 2025

@nannybb My breast cancer is your most common hormone driven kind. Even though stage 1, I...

https://connect.mayoclinic.org/comment/1432536/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 6, 2025

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