Neuroendocrine Tumors (NETs) Support Group

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Comments (880)

@jessie1990 I hear you. I'm fed up too. For my surgeon to mention P.T. yesterday as...

https://connect.mayoclinic.org/comment/1447670/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 26, 2025

@nannybb I always had asthma when I was sick or exposed to many animals. Then in...

https://connect.mayoclinic.org/comment/1432474/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 6, 2025

Thank you for your reply I'm here in UK an there are not many support groups...

https://connect.mayoclinic.org/comment/1328821/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 17, 2025

I was diagnosed with DIPNECH in June of last year. I have surgery to remove the...

https://connect.mayoclinic.org/comment/1244389/

Discussion: DIPNECH diagnosis. Has anyone had radiation?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 24, 2025

yes was found in routine blood work with liver values off further testing revealed tumors in...

https://connect.mayoclinic.org/comment/671990/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 18, 2022

I have lung nets.... along with 1 Adenocarcinoma. The top right lobe and parts of the...

https://connect.mayoclinic.org/comment/1323823/

Discussion: Anyone have lung NETs lining your pleura?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 9, 2025

@pete1962, I'd like to add to the helpful post from @lu7. (I wish you both successful...

https://connect.mayoclinic.org/comment/817128/

Discussion: Recurrence in Liver after Whipple

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 25, 2023

Sorry the removal was incomplete. My suggestion is ask (insist) to see a NET specialist for...

https://connect.mayoclinic.org/comment/1426993/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 30, 2025

@nannybb Good question. Because there are 3x as many people with GI NETs as lung NETs,...

https://connect.mayoclinic.org/comment/1431581/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 5, 2025

Doctor recommended another test before making the surgery decision. A Netscan. We'll see what that indicates...

https://connect.mayoclinic.org/comment/660238/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 6, 2021

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

Yes mine came from my lung ten months after they said they had gotten it all....

https://connect.mayoclinic.org/comment/812238/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 16, 2023

Diagnosis started with stage 1 upper right lobe lobechtemy. Changed to 3b after spread to 2nd...

https://connect.mayoclinic.org/comment/1435262/

Discussion: Have you ever had hiccups with or after chemotherapy?

Support Group: Cancer: Managing Symptoms

Posted: Nov 10, 2025

I did 5 year watch on my lung nodules. then accidentally with through CAT scan two...

https://connect.mayoclinic.org/comment/1057169/

Discussion: Lung nodule could be slow growing carcinoid: Watch and wait is scary

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 25, 2024

@tufan HI Tufan, I'm sorry to hear that. I hope soon you start getting good treatment...

https://connect.mayoclinic.org/comment/803389/

Discussion: Neuroendocrine Lung stage 4B with metastasis in liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 29, 2023

I take octreotide injections for lung NETs and DIPNECH to control respiratory symptoms (works great) and...

https://connect.mayoclinic.org/comment/1346205/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 11, 2025

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

I had some small lung nodules noticed on a scan 2 years ago and was being...

https://connect.mayoclinic.org/comment/831653/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2023

@travelgirl Yes, I had my CT and appt. today. I now definitely have 3 nodules and...

https://connect.mayoclinic.org/comment/232983/

Discussion: Facing Cancer Recurrence, PTSD & Acknowledging Mental Health

Support Group: Cancer: Managing Symptoms

Posted: Jul 25, 2019

I have had all stool tests, ct liver belly, pancreas and ldct lung which showed 6...

https://connect.mayoclinic.org/comment/823720/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 9, 2023

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