Neuroendocrine Tumors (NETs) Support Group

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Comments (461)

@nannybb I’ve read all of your responses, but I did not see a previous one regarding...

https://connect.mayoclinic.org/comment/1431871/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 5, 2025

@jball77 You might consider messaging your surgeon through the patient portal to see if breathing exercises...

https://connect.mayoclinic.org/comment/1057641/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 26, 2024

Thanks…. My diagnosis was Large Cell lung NETs, I was told it was more aggressive than...

https://connect.mayoclinic.org/comment/897051/

Discussion: How long do I wait between injections and PET scans.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 16, 2023

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

@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

@nannybb I always had asthma when I was sick or exposed to many animals. Then in...

https://connect.mayoclinic.org/comment/1432474/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 6, 2025

@annie12345 My largest was 2.6 cm and they destroyed it with microwave ablation 4 years ago...

https://connect.mayoclinic.org/comment/1330723/

Discussion: Any one with Neuroendocrine tumors getting the shot once a month?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 19, 2025

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

@californiazebra (Hit send by accident) the large 2.6 cm tumor was more likely to spread. I...

https://connect.mayoclinic.org/comment/1427894/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 31, 2025

Sorry to hear about your NETS diagnosis. Check out LACNETS.org and you will find so much...

https://connect.mayoclinic.org/comment/842248/

Discussion: What do I need to know about NETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 12, 2023

Since you have 5 lung NETs, read up on DIPNECH which is something some of us...

https://connect.mayoclinic.org/comment/1359327/

Discussion: Recently diagnosed with a NET in my middle lobe of my right lung.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 29, 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

Has anyone with Lung NETS suffer from pain through to back under shoulder blades? Can only...

https://connect.mayoclinic.org/comment/1057873/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 26, 2024

What kind of NETs do you have? I feel like octreotide different for lung NETs vs...

https://connect.mayoclinic.org/comment/1594706/

Discussion: Octreotide Side Effects

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 9 10:30pm

I have lung NETs with tumor on my left lobe and mediastinum. With this I have...

https://connect.mayoclinic.org/comment/845043/

Discussion: Net unknown cause of breathing problems

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 18, 2023

My recent 6 month CT scan showed a 7 mm pancreatic cyst that looks like a...

https://connect.mayoclinic.org/comment/953372/

Discussion: Anyone have a small pancreatic IPMN cyst that turned out to be cancer?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 24, 2023

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

@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

@nannybb A regular PET scan looks for high metabolic activity because cancer cells use a lot...

https://connect.mayoclinic.org/comment/1431078/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 4, 2025

@kdubbs DIPNECH sounds much scarier than it is. Sloooowww growing. You’ll be around for a long...

https://connect.mayoclinic.org/comment/1394217/

Discussion: Biopsy showed DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 15, 2025

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