Neuroendocrine Tumors (NETs) Support Group

@nannybb What else do you have that is related to lung NETs? I also have PCOS...

https://connect.mayoclinic.org/comment/1569407/

Discussion: I am 75 and have carcinoid tumors NET in lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 8 12:01am

@stephanieann Here is a pretty good article from the American Cancer Society on treatment options for...

https://connect.mayoclinic.org/comment/1561658/

Discussion: I am 75 and have carcinoid tumors NET in lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 28 9:30am

@californiazebra respiratory and lung infections?? Like bronchitis?

https://connect.mayoclinic.org/comment/1570778/

Discussion: Anyone living long-term with DIPNECH on lungs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 9 4:32pm

@azrosegold I too get treated at Mayo Phoenix and have a pulmonologist to deal with lung...

https://connect.mayoclinic.org/comment/1561589/

Discussion: I am 75 and have carcinoid tumors NET in lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 28 8:29am

@nvent5 I didn’t know that, but you’re right. I just looked it up and DIPNECH is...

https://connect.mayoclinic.org/comment/1570722/

Discussion: Anyone living long-term with DIPNECH on lungs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 9 3:12pm

@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

@gig666 what she’s talking about is the rare lung disease called DIPNECH. That’s dance for diffuse...

https://connect.mayoclinic.org/comment/1563718/

Discussion: Anyone living long-term with DIPNECH on lungs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 1 5:07am

@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

@californiazebra I went to the Pulmonology. He is having to do Flonase, an allergy pill, and...

https://connect.mayoclinic.org/comment/1573990/

Discussion: Anyone living long-term with DIPNECH on lungs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: 5 days ago

@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

Hi, They discovered a 8 mm lung nodule in 2020 when I had to have heart...

https://connect.mayoclinic.org/comment/1561392/

Discussion: I am 75 and have carcinoid tumors NET in lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 28 4:19am

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 @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

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

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

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

@bjh369- Hello and welcome to our group. You are right, you just keep on keeping on....

https://connect.mayoclinic.org/comment/232797/

Discussion: Facing Cancer Recurrence, PTSD & Acknowledging Mental Health

Support Group: Cancer: Managing Symptoms

Posted: Jan 7, 2019

77 years old, female, no symptoms still being diagnosed. Tumor in left lower lung and left...

https://connect.mayoclinic.org/comment/1022376/

Discussion: Carcinoid tumor right middle lobe.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 25, 2024

Hello @sydmiller1 and welcome to the NETs support group on Mayo Connect. It appears from your...

https://connect.mayoclinic.org/comment/1333446/

Discussion: High or Fluctuating Chromogranin A Level: What does it mean?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 23, 2025