Neuroendocrine Tumors (NETs) Support Group

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Hello Well it’s getting close to surgery time 12/26 7:00am. Twenty three years to the day...

https://connect.mayoclinic.org/comment/985519/

Discussion: How do I know somatostatin is in my system?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 23, 2023

I recently had my first appointment with DR Starr It is very important that he have...

https://connect.mayoclinic.org/comment/1483504/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 16 4:29am

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

Thank you for your reply its encouraging to hear about your journey.Yes mine are typical nets...

https://connect.mayoclinic.org/comment/1329199/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 17, 2025

No wheezing or shortness of breath, however I had coughed up blood maybe 4 times in...

https://connect.mayoclinic.org/comment/1198235/

Discussion: Any advice for someone recently diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 27, 2024

I was diagnosed with atypical carcinoid of the lung that had metastasized to my lymph nodes....

https://connect.mayoclinic.org/comment/1025524/

Discussion: Atypical pulmonary carcinoid

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 1, 2024

My recent 6 month CT scan showed a 7 mm pancreatic cyst that looks like a...

https://connect.mayoclinic.org/comment/953372/

Discussion: Anyone have a small pancreatic IPMN cyst that turned out to be cancer?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 24, 2023

@nannybb yes antibiotics for kidney infection just told me keep taking salpadol for lung pain my...

https://connect.mayoclinic.org/comment/1448849/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 28, 2025

I will be having robotic surgery on July 11 to have the NETs cancer removed from...

https://connect.mayoclinic.org/comment/1079515/

Discussion: Altitude change after lung biopsy/bronchoscopy

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 2, 2024

See comments by annj as I also had my left lower lung removed due to a...

https://connect.mayoclinic.org/comment/1061396/

Discussion: Describe your recovery from lung NET surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 3, 2024

I have lung NETs with tumor on my left lobe and mediastinum. With this I have...

https://connect.mayoclinic.org/comment/845043/

Discussion: Net unknown cause of breathing problems

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 18, 2023

Hello, @hopeful33250. Yes, this is my first carcinoid tumor and I have sought a second opinion...

https://connect.mayoclinic.org/comment/657531/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 26, 2021

Hello @1peg and welcome to the NETs support group on Mayo Connect. Connect is a good...

https://connect.mayoclinic.org/comment/1262844/

Discussion: Neuroendocrine cell tumor

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 20, 2025

I also have the same condition . I am 72 , diagnosed 8 years ago ....

https://connect.mayoclinic.org/comment/1142709/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 16, 2024

@californiazebra Thanks for the input. I have a bronchoscopy scheduled for 11/20. The docs want to...

https://connect.mayoclinic.org/comment/1438816/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 14, 2025

@gprior Thank you for the response. You’ve been through a lot. I’m sorry to hear of...

https://connect.mayoclinic.org/comment/1224889/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 29, 2025

@mcohan Most doctors, even radiologists, pulmonologists and oncologists haven't even heard of DIPNECH. I recently went...

https://connect.mayoclinic.org/comment/965599/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 16, 2023

I actually finished my chemo and radiation treatments and I had surgery to remove the rest...

https://connect.mayoclinic.org/comment/918433/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 24, 2023

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

Hello @sun56 and welcome to the NETs discussion on Mayo Clinic Connect. I can understand what...

https://connect.mayoclinic.org/comment/831612/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2023

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