Neuroendocrine Tumors (NETs) Support Group

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Comments (895)

Hi @triveraderubio and others with DIPNECH and Lung NETs. I hope the octreotide is working for...

https://connect.mayoclinic.org/comment/834726/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 30, 2023

Thank you! I am 72. They found these carcinoids on CT for colon cancer. I had...

https://connect.mayoclinic.org/comment/963390/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 12, 2023

Hi I am curious about your diagnosis & treatment. What type & stage was your NET?...

https://connect.mayoclinic.org/comment/1350160/

Discussion: Carcinoid cancer: Want to meet others

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 17, 2025

Hi @jan355 I'm so sorry to hear about your oxygen issues and for so many years....

https://connect.mayoclinic.org/comment/1220927/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 24, 2025

I had somehow never seen this post until yesterday. I was diagnosed with stage 2A triple...

https://connect.mayoclinic.org/comment/232957/

Discussion: Facing Cancer Recurrence, PTSD & Acknowledging Mental Health

Support Group: Cancer: Managing Symptoms

Posted: Jul 7, 2019

Yes, please get a second opinion from a NETs multidisciplinary team familiar with DIPNECH before your...

https://connect.mayoclinic.org/comment/1208016/

Discussion: Diagnosed with DIPNECH yesterday!

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 10, 2025

There are only about 300 documented cases of DIPNECH which is why most doctors have never...

https://connect.mayoclinic.org/comment/1205680/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 7, 2025

I had been diagnosed with 2 carcinoid tumors ...one in the lower lobe and one in...

https://connect.mayoclinic.org/comment/974703/

Discussion: Anyone with carcinoid tumors in lung and stomach?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 4, 2023

@lkent I'm sorry that you have to go through this. While I'm not as well versed...

https://connect.mayoclinic.org/comment/1326346/

Discussion: Anyone have lung NETs lining your pleura?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 13, 2025

@mbkcanada, I believe that @tymish17 @tvichkon and @vlpr have mentioned prophylactic brain radiation or prophylactic cranial...

https://connect.mayoclinic.org/comment/1278097/

Discussion: Anyone have Prophylactic Cranial Irradiation (PCI) for SCLC NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 9, 2025

I joined the NET support group because my father had an intestinal carcinoid tumor; my half...

https://connect.mayoclinic.org/comment/275684/

Discussion: What topics do you want for the Neuroendocrine Support Group?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 22, 2019

I too am Atypical lung net. It has spread to liver and several vertebrae in my...

https://connect.mayoclinic.org/comment/939666/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 1, 2023

My tumor team talked about surgery but they would have taken the entire lung. The radiologist...

https://connect.mayoclinic.org/comment/1056518/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 24, 2024

As this is all so very new to me, my daughters and I have a list...

https://connect.mayoclinic.org/comment/899253/

Discussion: Newly diagnosed High-Grade Neuroendocrine Lung Carcinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2023

Hi Sueannsellers, You are welcome yes that nurse practitioner's words very helpful and reinforced in much...

https://connect.mayoclinic.org/comment/815576/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 22, 2023

The doctor said the typical carcinoids have nothing to do with my colon cancer. I had...

https://connect.mayoclinic.org/comment/976777/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 7, 2023

Hello Diet information can be found at https://netrf.org/. I have stage 3 lung NETs and have...

https://connect.mayoclinic.org/comment/899083/

Discussion: First Lanreotide Injection: Any tips about diet and side effects?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2023

@anyone. I had my ct scan a couple of days ago and I talked to the...

https://connect.mayoclinic.org/comment/232789/

Discussion: Facing Cancer Recurrence, PTSD & Acknowledging Mental Health

Support Group: Cancer: Managing Symptoms

Posted: Dec 14, 2018

Hello @paulaelliott007 and welcome to Mayo Connect. This is unusual to hear of sisters both having...

https://connect.mayoclinic.org/comment/801293/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 25, 2023

@rogo, I believe you are referring to lung carcinoid tumors with Diffuse Idiopathic Pulmonary NeuroEndocrine Cell...

https://connect.mayoclinic.org/comment/1070380/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 18, 2024

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