Neuroendocrine Tumors (NETs) Support Group

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Comments (907)

@nannybb My breast cancer is your most common hormone driven kind. Even though stage 1, I...

https://connect.mayoclinic.org/comment/1432536/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 6, 2025

I’ve been taking octreotide injections for DIPNECH and lung NETs for 4 years. No GI issues...

https://connect.mayoclinic.org/comment/1199060/

Discussion: DIPNECH (diffuse idiopathic pulmonary neuroendocrine cell hyperplasia)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 28, 2024

I hope that you had diagnosed i had the same symptoms of cushing with normal pitutary...

https://connect.mayoclinic.org/comment/884022/

Discussion: Feeling discouraged and too many specialists

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 24, 2023

Thank you for your response and treatment info. It seems a good thing that you have...

https://connect.mayoclinic.org/comment/814505/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 20, 2023

So sorry to hear about your tumors. Can they surgically take them out to buy more...

https://connect.mayoclinic.org/comment/1511570/

Discussion: How do you mentally handle reoccurrence?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 21 8:38pm

Hi @marciamiller I also have DIPNECH and lung NETS (cancer). I’m guessing you saw Dr. Ramirez....

https://connect.mayoclinic.org/comment/1162740/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 25, 2024

@gprior Have you tried octreotide injections for respiratory symptoms? It has been life changing for me....

https://connect.mayoclinic.org/comment/1142710/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 16, 2024

Hi there- I initially had pancreatitis. Because of that, my physician ordered a variety of lab...

https://connect.mayoclinic.org/comment/805673/

Discussion: Neuroendocrine tumor: What tests are used for diagnosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 3, 2023

I'm exactly your age and my situation appears to be exactly like yours. But my journey...

https://connect.mayoclinic.org/comment/941331/

Discussion: 4 treatment options from my doctor, which one should I start with?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 3, 2023

Hi GAP, Last May 2022 I had a lung NET removed with the right upper lobe...

https://connect.mayoclinic.org/comment/802258/

Discussion: Neuroendocrine Lung stage 4B with metastasis in liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 27, 2023

No. No one realized what was going on until I went home 12 days post surgery....

https://connect.mayoclinic.org/comment/674116/

Discussion: Have you ever had hiccups with or after chemotherapy?

Support Group: Cancer: Managing Symptoms

Posted: Jan 23, 2022

I have neuroendocrine lung cancer stage 4, grade 1. Liver and bone nets. I've gotten good...

https://connect.mayoclinic.org/comment/1227132/

Discussion: 4 treatment options from my doctor, which one should I start with?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 1, 2025

The oncologist feels that the Zometa will strengthen the areas in my spine and pelvis. One...

https://connect.mayoclinic.org/comment/1143611/

Discussion: PRRT side effects and results

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 18, 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

On November 25th my Pulmonologist diagnosed me with Neuro-Endoscopic Small Cell lung cancer. About a week...

https://connect.mayoclinic.org/comment/1469727/

Discussion: Anyone have anything to share on Neuroendoscopic SCLC? In hospice

Support Group: Lung Cancer

Posted: Dec 29, 2025

Your English is great and your story was easy to follow. Definitely do all the monitoring...

https://connect.mayoclinic.org/comment/1237831/

Discussion: Diagnosed with NET si-NET Stage 1 Grade 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 15, 2025

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

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