Neuroendocrine Tumors (NETs) Support Group

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Comments (883)

I actually finished my chemo and radiation treatments and I had surgery to remove the rest...

https://connect.mayoclinic.org/comment/918433/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 24, 2023

Hi @ocean3131 I also have DIPNECH and you can read my other posts for more details...

https://connect.mayoclinic.org/comment/987810/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 28, 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, I'm new here. I found out I had NETs incidentally as well. During a CT...

https://connect.mayoclinic.org/comment/1354252/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 22, 2025

Thank you for all the information. I have nonfunctioning lung to liver Net just found out...

https://connect.mayoclinic.org/comment/671705/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 17, 2022

Good plan to see a NETs team. DIPNECH is rare. Latest data I’ve read is 300...

https://connect.mayoclinic.org/comment/1108887/

Discussion: DIPNECH (diffuse idiopathic pulmonary neuroendocrine cell hyperplasia)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2024

@woundedwarrior1969 Your philosophy certainly may be true for some disorders. In the case of DIPNECH the...

https://connect.mayoclinic.org/comment/965985/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 16, 2023

@tomrennie Thank you for your input. Typical (grade 1) and atypical (grade 2) classifications are specific...

https://connect.mayoclinic.org/comment/1430349/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 3, 2025

Thanks Teresa for the prompt answer , I saw the oncologist on the 18th of June...

https://connect.mayoclinic.org/comment/134275/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 25, 2018

@hopeful33250 Thank you so much for your prompt response. Yes, It is my first post. Small...

https://connect.mayoclinic.org/comment/1415809/

Discussion: I have a neuroendocrine tumour in the small bowel and liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 14, 2025

Hi @lady1lake! Thank you. I really appreciate the feedback that am helping even in the smallest...

https://connect.mayoclinic.org/comment/232891/

Discussion: Facing Cancer Recurrence, PTSD & Acknowledging Mental Health

Support Group: Cancer: Managing Symptoms

Posted: Mar 21, 2019

You are so welcome and thank you for words of encouragement. Sounds like you have a...

https://connect.mayoclinic.org/comment/826704/

Discussion: NET lung with Liver Metastasis (stage 4)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 15, 2023

Thank you and we feel the same way. Why not monitor at this point. She feels...

https://connect.mayoclinic.org/comment/1111437/

Discussion: NET on liver: Question about treatments when no symptoms

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 25, 2024

Hi rogo yes I live with diagnosis of DIPNECH & lung neuroendocrine cancer (Typical tumor)confirmed by...

https://connect.mayoclinic.org/comment/1288532/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 23, 2025

I met a lady through a NETs organization who told me she had a lung lobe...

https://connect.mayoclinic.org/comment/963377/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 12, 2023

My son is feeling great. He was seen at Mayo this past Monday. They did a...

https://connect.mayoclinic.org/comment/225836/

Discussion: My son's neuroendocrine tumor

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 10, 2019

I was diagnosed with a .4c rectal carcinoid in 2000 and a recurrence in 2010. Four...

https://connect.mayoclinic.org/comment/134276/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 25, 2018

Oh, I also suggest you hook up with a NETs specialty team (likely at a university...

https://connect.mayoclinic.org/comment/1391742/

Discussion: Biopsy showed DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 11, 2025

@mlbschuler I am so excited to hear you are seeing Robert Ramirez! He seems the most...

https://connect.mayoclinic.org/comment/1012065/

Discussion: Neuroendocrine cells in Breast and Lungs DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 8, 2024

Wow, glad they found them. I, also, had a few other tumors in the lobe they...

https://connect.mayoclinic.org/comment/976769/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 7, 2023

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