Neuroendocrine Tumors (NETs) Support Group

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Comments (883)

I was recently diagnosed with (1) early stage lung cancer, (2) emphysema (3) DIPNECH with tumorlets...

https://connect.mayoclinic.org/comment/1181526/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 28, 2024

@calimomma Hard to answer your question because you have a lot going on and I’m not...

https://connect.mayoclinic.org/comment/1232671/

Discussion: Relationship between endometrium cancer and DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 9, 2025

It sounds like you have very competent doctors advising you. I have a friend facing the...

https://connect.mayoclinic.org/comment/232963/

Discussion: Facing Cancer Recurrence, PTSD & Acknowledging Mental Health

Support Group: Cancer: Managing Symptoms

Posted: Jul 8, 2019

I was diagnosed with atypical carcinoid neuroendicrine tumors in March of 2022. I underwent surgery to...

https://connect.mayoclinic.org/comment/793653/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 7, 2023

@bdpp- Oh my word life just doesn't give us what we expect or want a lot...

https://connect.mayoclinic.org/comment/232992/

Discussion: Facing Cancer Recurrence, PTSD & Acknowledging Mental Health

Support Group: Cancer: Managing Symptoms

Posted: Aug 13, 2019

I DID GO TO MDA FOR A SECOND OPINION. HOWEVER I AM AN ESTABLISHED PATIENT NOW....

https://connect.mayoclinic.org/comment/801887/

Discussion: Stage 4, High-Grade Neuroendocrine carcinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 26, 2023

My tumors were found when they did a bone scan for osteoporosis. My doctor had seen...

https://connect.mayoclinic.org/comment/1459151/

Discussion: Did anyone else have a long struggle to getting a NETs diagnosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 12, 2025

Oh Jess...SIX hours! I'm so glad that part is over. Do you just have one chest...

https://connect.mayoclinic.org/comment/1457111/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 9, 2025

Yes, I would say your throat clearing is from DIPNECH. Octreotide fixed that for me. Yes,...

https://connect.mayoclinic.org/comment/1330274/

Discussion: DIPNCEH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 19, 2025

Hi @jhhaas, I'm tagging fellow members like @mcohan @magnum2 @meryls12 @californiazebra who have experience with DIPNECH...

https://connect.mayoclinic.org/comment/976431/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 7, 2023

Hi @shella, I wanted to make sure you saw the helpful post from @merpreb. I have...

https://connect.mayoclinic.org/comment/815207/

Discussion: What tumor size is typical for removing part of the lung?

Support Group: Lung Cancer

Posted: Feb 21, 2023

The Tumour in my spine is my secondary cancer I have unknown primary. I have had...

https://connect.mayoclinic.org/comment/810621/

Discussion: Anyone have a neuroendocrine tumor (NET) in the spine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 13, 2023

Hi @ahtaylor -- I love your motto! I have always loved the "Never Give Up" poster...

https://connect.mayoclinic.org/comment/867775/

Discussion: Life expectancy with NETs and lifetyle as it progresses

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 27, 2023

Im sorry to hear you are going through that. It is actually my brother. He had...

https://connect.mayoclinic.org/comment/1325183/

Discussion: Anyone have lung NETs lining your pleura?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 11, 2025

I also have multifocal lung cancer. I am in Rochester now preparing for my CT scan...

https://connect.mayoclinic.org/comment/232767/

Discussion: Facing Cancer Recurrence, PTSD & Acknowledging Mental Health

Support Group: Cancer: Managing Symptoms

Posted: Dec 10, 2018

My husband has been fighting this since 2021, he had a tumor removed from his spine...

https://connect.mayoclinic.org/comment/1269480/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 29, 2025

@jessie1990 Is part of it because of homelessness? Rents here are horrible, and many people just...

https://connect.mayoclinic.org/comment/1436661/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 12, 2025

I am a lung cancer survivor. I was lucky my PCP ordered a CT scan just...

https://connect.mayoclinic.org/comment/1062273/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 4, 2024

@jessie1990 No. I do not recall having lymph nodes biopsied when I had my lung biopsy...

https://connect.mayoclinic.org/comment/1430235/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 3, 2025

Thank you for sharing your story. I hope your doctors can find a way to help...

https://connect.mayoclinic.org/comment/1198940/

Discussion: Any advice for someone recently diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 28, 2024

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