Neuroendocrine Tumors (NETs) Support Group

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Comments (421)

@californiazebra Thank you so much for all that information. I looked up DIPNECH as soon as...

https://connect.mayoclinic.org/comment/1432510/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 6, 2025

@jessie1990 Understood. Still consult with a NETs specialist. Lung specialists are not necessarily NETs specialists and...

https://connect.mayoclinic.org/comment/1427228/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 30, 2025

Hi , I have the exact same diagnosis and situation as you do. I have tumorlets...

https://connect.mayoclinic.org/comment/1397213/

Discussion: Biopsy showed DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 20, 2025

Hi I was just diagnosed last week with both DIPNECH and NETS. I am out near...

https://connect.mayoclinic.org/comment/1393934/

Discussion: Biopsy showed DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 15, 2025

Hi, I'm new here. I found out I had NETs incidentally as well. During a CT...

https://connect.mayoclinic.org/comment/1354252/

Discussion: Initial imaging and tests; what to expect after initial NETs diagnosis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 22, 2025

I had a small nodule removed last year that was confirmed to be neuroendocrine lung net....

https://connect.mayoclinic.org/comment/1343726/

Discussion: Anyone have lung NETs lining your pleura?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 8, 2025

That's amazing ! I feel very blessed an encouraged by this,The largest nodule in my lung...

https://connect.mayoclinic.org/comment/1330481/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 19, 2025

Are you taking a treatment? So interesting, these various symptoms, like GERD! I had it for...

https://connect.mayoclinic.org/comment/1330063/

Discussion: DIPNCEH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2025

Hi ggiinnaa I am not a lung net person but I know as we get older,...

https://connect.mayoclinic.org/comment/1265572/

Discussion: Could a mass on adrenal gland be linked to my carcinoid lung tumor?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 24, 2025

@jukebox42 Sorry you feel stressed. Is this a new diagnosis for you? I posted about octreotide...

https://connect.mayoclinic.org/comment/1254968/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 10, 2025

Good morning!!! As I mentioned above, I was diagnosed January 2020, grade 3 (Ki67 17-29 depending...

https://connect.mayoclinic.org/comment/1247365/

Discussion: Anyone have experience with cabozantinib (Cabometyx)?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 28, 2025

Hello @panorman3 and welcome to the NETs support group on Mayo Connect. You say in your...

https://connect.mayoclinic.org/comment/1247054/

Discussion: My carcinoid tumor is inoperable: What are the best ways to control?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 28, 2025

Original site small intestine/appendix with first surgery in 2004 (they thought it was an appendicitis but...

https://connect.mayoclinic.org/comment/1233382/

Discussion: How does Alcohol use affect Liver NET?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 10, 2025

It seems my first lobectomy 6 years ago was dipnech related nets, my second lobectomy in...

https://connect.mayoclinic.org/comment/1229468/

Discussion: Already on oxygen - diagnosed with DIPNECH: What happens next?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 4, 2025

I have Lungs NETS in both lungs. Recent growth, small amount now diagnosed with DIPNECH. I...

https://connect.mayoclinic.org/comment/1205143/

Discussion: Concerns after lobectomy for carcinoid tumor in lung

Support Group: Lung Cancer

Posted: Jan 6, 2025

My fiance was diagnosed with NETs in Sept of this year after 3 ED visits with...

https://connect.mayoclinic.org/comment/1197766/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 27, 2024

Hi Teresa, I’m currently a patient at Mayo in Jacksonville. I have been treated this year...

https://connect.mayoclinic.org/comment/1170850/

Discussion: NET of the Rectum: Anyone at Mayo Jacksonville? What can I expect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 9, 2024

Hello @aulynn and welcome to the NETs support group on Mayo Connect. I'm so glad that...

https://connect.mayoclinic.org/comment/1161114/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 22, 2024

Hello @dolly123 and welcome to Mayo Connect. As you posted in the NETs (Neuroendocrine Tumors) support...

https://connect.mayoclinic.org/comment/1062285/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 4, 2024

I have a lung NET and My flushing was immediate and only lasted a minute or...

https://connect.mayoclinic.org/comment/1056779/

Discussion: Flushing with NETS lung cancer?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 25, 2024

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