Neuroendocrine Tumors (NETs) Support Group

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Comments (262)

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

@peggymariejackson @hopeful33250 @sherikayb @debbieguk @ce1b I see some of you have lung NETs, some GI NETs,...

https://connect.mayoclinic.org/comment/861008/

Discussion: Net unknown cause of breathing problems

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 17, 2023

I became aware of the nodule in February 2023 after CT scan due to COVID .I...

https://connect.mayoclinic.org/comment/831626/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 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

Hello, I was diagnosed in March '22 with neuroendocrine atypical carcinoid cancer. I had a partial...

https://connect.mayoclinic.org/comment/805534/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 2, 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

I also just had a copper scan August 2022 they found a hemangioma in my 5th...

https://connect.mayoclinic.org/comment/750923/

Discussion: Liver mets mistaken as hemangioma or harmatoma on MRI

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 17, 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

Hi @gapsc, welcome back. Great to get an update from you. You'll notice I moved your...

https://connect.mayoclinic.org/comment/134281/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 10, 2019

@nannybb yes pneumonia is gone not sure about abcess but my lung specialist put me on...

https://connect.mayoclinic.org/comment/1442944/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 20, 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

Hi guys is it normal to have lung pain wit typical carcinoid

https://connect.mayoclinic.org/comment/1434939/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 10, 2025

I had full surgery not keyhole to remove a 5x3cm typical carcinoid stage 2a 11 years...

https://connect.mayoclinic.org/comment/1433982/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 8, 2025

@nannybb I just copied this from Mayo's website: Carcinoid tumors are a type of slow-growing cancer...

https://connect.mayoclinic.org/comment/1430781/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 4, 2025

Hi , I have the exact same diagnosis and situation as you do. I have tumorlets...

https://connect.mayoclinic.org/comment/1397213/

Discussion: Biopsy showed DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 20, 2025

In life there are both clubs we seek to join and clubs that seek to join...

https://connect.mayoclinic.org/comment/1357919/

Discussion: Initial imaging and tests; what to expect after initial NETs diagnosis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 27, 2025

I take octreotide injections for lung NETs and DIPNECH to control respiratory symptoms (works great) and...

https://connect.mayoclinic.org/comment/1346205/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 11, 2025

@annie12345 After you read thru all the posts, let me know what questions you still have....

https://connect.mayoclinic.org/comment/1329039/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 17, 2025

Hello @panorman3 and welcome to the NETs support group on Mayo Connect. You say in your...

https://connect.mayoclinic.org/comment/1247054/

Discussion: My carcinoid tumor is inoperable: What are the best ways to control?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 28, 2025