Neuroendocrine Tumors (NETs) Support Group

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Comments (461)

I too have a Lung NETs that has metastasized to my lymph nodes. My understanding is...

https://connect.mayoclinic.org/comment/939932/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 1, 2023

Hi @breck You’ve been through a lot. Sorry to hear they did not get it all....

https://connect.mayoclinic.org/comment/1169807/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 7, 2024

@nannybb I agree with you that medical stuff is interesting. I wanted to be a veterinarian...

https://connect.mayoclinic.org/comment/1431902/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 6, 2025

I have lung nets that were dx several years ago and biopsied at that time. I...

https://connect.mayoclinic.org/comment/1325579/

Discussion: Anyone have lung NETs lining your pleura?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 12, 2025

Most NETs specialists seem to specialize in GI NETs rather than lung NETs. Handled differently. Not...

https://connect.mayoclinic.org/comment/1532444/

Discussion: DIPNECH dr in GA- Atlanta

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 21 11:31pm

Hello @kathryncd and welcome to Mayo Connect. I am sorry to hear of this new finding...

https://connect.mayoclinic.org/comment/764453/

Discussion: NED GI NETS since 2012. New finding on annual chest CT, Tubular Mucoid

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 23, 2022

@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

@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

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

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

Sorry to hear about your cancer and fatigue. I’ve been in treatment for recurrent breast cancer,...

https://connect.mayoclinic.org/comment/1552421/

Discussion: Why do I get so tired so easy?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 17 2:55am

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 @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

@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

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

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