Neuroendocrine Tumors (NETs) Support Group

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Comments (898)

@tomrennie is lung carcinoids easier to treat then GI carcinoids

https://connect.mayoclinic.org/comment/1530339/

Discussion: What's the difference between typical lung carcinoids and GI?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 19 3:33am

@zacharycat So did anything specific cause the lung fluid or was it a combination of everything?...

https://connect.mayoclinic.org/comment/1529997/

Discussion: Liver NETs: Anyone has extreme swelling in feet and ankles?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 18 2:03pm

@jessie1990 I do not have lung carcinoids, but my carcinoids were in the digestive tract. My...

https://connect.mayoclinic.org/comment/1500718/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 8 8:15am

@kdubbs That is a huge increase in lung function! That’s great!!! So you are relocating. Since...

https://connect.mayoclinic.org/comment/1533951/

Discussion: DIPNECH dr in GA- Atlanta

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 23 10:57pm

@kimberlybrunson Has any treatment been planned for the lung NETs?

https://connect.mayoclinic.org/comment/1492384/

Discussion: Tips about preparing for my second opinion appointment at Mayo

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 28 7:54am

@lisaonthegoco, welcome. You sound like a woman of action. Sitting around waiting for the other shoe...

https://connect.mayoclinic.org/comment/761186/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 14, 2022

@kjstein Outside of a lung infection I have the same effects from the Cabozantinib. Was the...

https://connect.mayoclinic.org/comment/1538302/

Discussion: Is anyone taking cabozantinib (Cabometyx)?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 29 8:10pm

@jessie1990 Am I reading this right? Is your lung STILL collapsed with the tumor blocking your...

https://connect.mayoclinic.org/comment/1436432/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 11, 2025

@nannybb Hi. No, the breast cancer is not related to the NETs/DIPNECH. I actually had the...

https://connect.mayoclinic.org/comment/1541386/

Discussion: Diagnosis Frustrated: How you were diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 2 3:53pm

@jessie1990 I only know the basics. They are both neuroendocrene tumors. GI carcinoids frequently cause digestive...

https://connect.mayoclinic.org/comment/1530121/

Discussion: What's the difference between typical lung carcinoids and GI?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 18 4:50pm

@mlassen1 I also had shortness of breath and low oxygen levels when checked. Turned out to...

https://connect.mayoclinic.org/comment/1551042/

Discussion: Blood Clots, DVT and Neuroendocrine Cancer - Be aware.

Support Group: Neuroendocrine Tumors (NETs)

Posted: 23 hours ago

@hopeful33250 oh sorry thought it was lung carcinoids do you still get regular scans

https://connect.mayoclinic.org/comment/1500826/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 8 10:49am

Hello @annie12345, I am glad that you found this forum. It will help you find support...

https://connect.mayoclinic.org/comment/1328967/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 17, 2025

Hello @kimberlybrunson, and welcome to the NETs support group on Mayo Clinic Connect. You've provided some...

https://connect.mayoclinic.org/comment/1491413/

Discussion: Tips about preparing for my second opinion appointment at Mayo

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 26 7:33pm

Hello @katinka58, I'm sorry to hear the recent MRI showed more problems with your husband's lung....

https://connect.mayoclinic.org/comment/1269539/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 29, 2025

Hello @netnan and welcome to Connect. Looking for voices of experience is what Connect is all...

https://connect.mayoclinic.org/comment/1106504/

Discussion: Sarcoidosis and Lung NET, upcoming surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 16, 2024

I can only answer for lung. If you have a carcinoid tumor in your lung, the...

https://connect.mayoclinic.org/comment/1254782/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 10, 2025

I did not have heart problems but had a 8 cm mass removed with the entire...

https://connect.mayoclinic.org/comment/1523947/

Discussion: Previous heart surgery & risks of surgery to remove lung net

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 10 11:42am

@kdubbs Also, you do have Emory University and Winship Cancer Institute there. Because DIPNECH is rare...

https://connect.mayoclinic.org/comment/1532932/

Discussion: DIPNECH dr in GA- Atlanta

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 22 1:52pm

Yes, that was what was recommended. I consulted a surgeon and he also recommended radiation as...

https://connect.mayoclinic.org/comment/943959/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 8, 2023

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