Neuroendocrine Tumors (NETs) Support Group

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Comments (419)

@tomrennie I agree about the second opinion with a lung NETs specialist while you wait. Not...

https://connect.mayoclinic.org/comment/1430662/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 4, 2025

@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

DIPNECH and lung NETs typically do have somatostatin receptors which is why I had the DOTATATE...

https://connect.mayoclinic.org/comment/1361481/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 1, 2025

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

Hi, I have had 2 of these scans, one in 3/23 and my second on 2/20/24,...

https://connect.mayoclinic.org/comment/1024460/

Discussion: 68Ga DOTATATE Positron Emission Tomography (PET) at Mayo Clinic

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 28, 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

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

@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

Hi @gmapam I have lung NETS and have had unrelated diverticulitis several times in the past...

https://connect.mayoclinic.org/comment/883798/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 23, 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

Hi @nana120 That's such great news to be stable!!! Sounds like the lanreotide is doing its...

https://connect.mayoclinic.org/comment/937205/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 27, 2023

@peggymariejackson @hopeful33250 @sherikayb @debbieguk @ce1b I see some of you have lung NETs, some GI NETs,...

https://connect.mayoclinic.org/comment/861008/

Discussion: Net unknown cause of breathing problems

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 17, 2023

@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

@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

@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

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