Neuroendocrine Tumors (NETs): Discussions | Page 5

Hi, I'm 67 years old. Have been mis-diagnosed for over 5 years. 2023 Dr. finally walks...

https://connect.mayoclinic.org/comment/1054374/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 20, 2024

@mieczyslaw If you have a lot of tumorlets in both lungs it sounds suspect for DIPNECH....

https://connect.mayoclinic.org/comment/962492/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 10, 2023

@meryls12, you may wish to consult with the leading NETs team at Mayo Clinic in Jacksonville...

https://connect.mayoclinic.org/comment/968224/

Discussion: Anyone had surgery to remove typical carcinoids of the lung?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 20, 2023

Hi @dipnech67 I would be happy to speak with you. I just sent you a private...

https://connect.mayoclinic.org/comment/1055386/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 22, 2024

I have also been diagnosed with DIPNECH and have probably had for 20 years. I have...

https://connect.mayoclinic.org/comment/1172007/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 11, 2024

@jhhaas Glad the surgery is behind you. Yes, you should have a NETs multidisciplinary team at...

https://connect.mayoclinic.org/comment/976633/

Discussion: Anyone had surgery to remove typical carcinoids of the lung?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 7, 2023

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 12:33pm

@mlbschuler Great news that you were happy with your visit with Dr. Ramirez and he is...

https://connect.mayoclinic.org/comment/1024996/

Discussion: Neuroendocrine cells in Breast and Lungs DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 29, 2024

Thanks for the update. I do not have those mutations so we may have different types...

https://connect.mayoclinic.org/comment/1226513/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 31 7:20pm

@jhhaas Good idea to get a second opinion. Glad you don’t have coughing. Octreotide also helps...

https://connect.mayoclinic.org/comment/1143685/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 18, 2024

Thank you for your response. I too have the carcinoid tumors and DIPNECH. Just getting started...

https://connect.mayoclinic.org/comment/1160949/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 22, 2024

While I haven’t been diagnosed with DIPNECH I am 2 years into my treatment journey living...

https://connect.mayoclinic.org/comment/1070929/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 19, 2024

Sorry to hear about your mom. I too have been looking for a DIPNECH Specialist, preferably...

https://connect.mayoclinic.org/comment/1065374/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 10, 2024

Hello @californiazebra, I really appreciate the chronology that you provided as you have been dealing with...

https://connect.mayoclinic.org/comment/1179350/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 24, 2024

Hi @ocean3131 I also have DIPNECH and you can read my other posts for more details...

https://connect.mayoclinic.org/comment/987810/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 28, 2023

I was Dx’d with DIPNECH post op after removal of right middle lobe Oct 2023. PET...

https://connect.mayoclinic.org/comment/1108711/

Discussion: DIPNECH (diffuse idiopathic pulmonary neuroendocrine cell hyperplasia)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2024

You definitely need to get a second opinion from a NETs specialist. Other types of lung...

https://connect.mayoclinic.org/comment/1242687/

Discussion: DIPNECH diagnosis. Has anyone had radiation?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 22 2:36am

Hi @rogo It seems like we’ve communicated in the past. I have DIPNECH and lung NETs...

https://connect.mayoclinic.org/comment/1070950/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 19, 2024

This is @amd12. I wasn't actually diagnosed with DIPNECH, but I was told that I seemed...

https://connect.mayoclinic.org/comment/772509/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 12, 2022

@gig666 How did your PET scan turn out? Was it a DOTATATE scan specifically for NETs?...

https://connect.mayoclinic.org/comment/1033637/

Discussion: High risk surgery. Is it worth it?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 14, 2024

Neuroendocrine Tumors (NETs) Support Group