Neuroendocrine Tumors (NETs) Support Group

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Comments (910)

Hello, @aliciabusiness5, and welcome to Mayo Connect. I you are dealing with lung NETs as well...

https://connect.mayoclinic.org/comment/1266869/

Discussion: Liver function (birirubin, globulin, glucose, iron) and Octreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2025

@nannybb Fortunately, I was able to have hypoallergenic dogs so I had 25 and 50 pound...

https://connect.mayoclinic.org/comment/1542048/

Discussion: I am 75 and have carcinoid tumors NET in lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 3 12:49pm

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

@jessie1990 I want to note that after reading so many stories of both GI NETs and...

https://connect.mayoclinic.org/comment/1427890/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 31, 2025

Hi @kole03 I hope you’re feeling well post lobectomy. You need to be followed by a...

https://connect.mayoclinic.org/comment/1328815/

Discussion: DIPNCEH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 17, 2025

I was diagnosed with acinar cell carcinoma of the pancreas in December 2024 They discovered it...

https://connect.mayoclinic.org/comment/1313385/

Discussion: Pancreatic Cancer Q&A with Dr. Stauffer, Mayo Surgeon: Archive

Support Group: Pancreatic Cancer

Posted: May 26, 2025

Hello @netnan, had left lung NET atypical carcinoid tumor. It was a little bigger - between...

https://connect.mayoclinic.org/comment/1106611/

Discussion: Sarcoidosis and Lung NET, upcoming surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 16, 2024

@jsudjian I don't see any mention of you having NETs so it doesn't seem like it...

https://connect.mayoclinic.org/comment/1378264/

Discussion: Worried about carcinoid syndrome

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 24, 2025

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

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

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

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 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

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

@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 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

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

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