Neuroendocrine Tumors (NETs) Support Group

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I had a breast MRI last year Jan 31, 2024 and the dreaded phone call came...

https://connect.mayoclinic.org/comment/1238976/

Discussion: Diagnosed with NET si-NET Stage 1 Grade 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 17, 2025

@nannybb yes I'm also in the same situation my biopys showed benign twice and the half...

https://connect.mayoclinic.org/comment/1462248/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 16, 2025

Remember to read the posts from the discussion group in my previous post, @gig666. You will...

https://connect.mayoclinic.org/comment/1022138/

Discussion: Anyone else get bloating and abdominal pain from NETS or Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 25, 2024

Hello @lrittmiller I hope that the comments of @californiazebra are helpful to you. As you can...

https://connect.mayoclinic.org/comment/1108139/

Discussion: DIPNECH (diffuse idiopathic pulmonary neuroendocrine cell hyperplasia)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 19, 2024

In 2019 I had to have a pet scan because I was having liver issues -...

https://connect.mayoclinic.org/comment/1056651/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 24, 2024

I have Lungs NETS in both lungs. Recent growth, small amount now diagnosed with DIPNECH. I...

https://connect.mayoclinic.org/comment/1205143/

Discussion: Concerns after lobectomy for carcinoid tumor in lung

Support Group: Lung Cancer

Posted: Jan 6, 2025

@nannybb I found it weird this man I've seen is about same age as me he...

https://connect.mayoclinic.org/comment/1436843/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 12, 2025

Hello @kathyzee and welcome to Connect. I can understand your concern and wanting to connect with...

https://connect.mayoclinic.org/comment/1344435/

Discussion: Anyone have lung NETs lining your pleura?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 9, 2025

Thank you for reply, I don't have a net's team, I rely on my thoracic surgeon...

https://connect.mayoclinic.org/comment/1142739/

Discussion: Anyone living long-term with DIPNECH on lungs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 17, 2024

I am going back in two months to get another CT of my lungs as well...

https://connect.mayoclinic.org/comment/1360055/

Discussion: stage 1A Net removed from upper left lobe

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 30, 2025

@jogessert I’ll add my welcome, too. You may also be interested in this related discussion: -...

https://connect.mayoclinic.org/comment/899250/

Discussion: Newly diagnosed High-Grade Neuroendocrine Lung Carcinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2023

@melmangen, might Mayo Clinic in Jacksonville, Florida be an option for you? Mayo Clinic, Florida has...

https://connect.mayoclinic.org/comment/753620/

Discussion: Anyone gone to Mayo Clinic in Rochester Minnesota for carcinoid tumors?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 25, 2022

Hi @dak10 and @mimmy. Thank you for sharing your lung NETs info. I also have typical...

https://connect.mayoclinic.org/comment/835869/

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 1, 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

Hi. Only found out about a neuroendocrine tumor in my lung lingula three weeks ago. Been...

https://connect.mayoclinic.org/comment/1394242/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 16, 2025

@jukebox42 Sorry you feel stressed. Is this a new diagnosis for you? I posted about octreotide...

https://connect.mayoclinic.org/comment/1254968/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 10, 2025

I hope you get answers soon. As someone who recently had a lung NET I know...

https://connect.mayoclinic.org/comment/1332822/

Discussion: High or Fluctuating Chromogranin A Level: What does it mean?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 22, 2025

Hi @ce1b -- I think you have a great attitude. I agree with your thoughts. Is...

https://connect.mayoclinic.org/comment/861470/

Discussion: Net unknown cause of breathing problems

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 17, 2023

Thank you Colleen. They have done following tests in order below Xray - saw a mass...

https://connect.mayoclinic.org/comment/794480/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 9, 2023

@annie12345 Typical carcinoids are not from smoking (smokers get atypical carcinoids). Nothing you did. My brother...

https://connect.mayoclinic.org/comment/1330066/

Discussion: Any one with Neuroendocrine tumors getting the shot once a month?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2025

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