1. < Neuroendocrine Tumors (NETs)

Any advice for someone recently diagnosed with NETs?

Posted by Pamela Shirley @pammy229, Dec 27, 2024

I was diagnosed with an embedded NET in my bronchial tube on December 17th. Any general advice while I’m waiting for my PET scan on January 2nd? Recently a doctor noticed I had the tumor in 2015 by looking at an old CT scan.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 27, 2024
In reply to @pammy229 "No wheezing or shortness of breath, however I had coughed up blood maybe 4 times in..." + (show)
@pammy229

No wheezing or shortness of breath, however I had coughed up blood maybe 4 times in the last 5 years. I finally asked for a CT. The first bronchoscopy was done in Idaho and the biopsy was benign. I decided to go to Mayo Clinic in Jacksonville; they did a second bronchoscopy and learned it was a NET, grade 1. They punched a hole through the middle of it, and the lower lobe of my lung (which had been collapsed without symptoms) inflated again. They took several biopsies and one piece was 1.2 cm. They did not check any lymph nodes at that time.

Jump to this post

@pammy229

I appreciate the added information on your recent lung NET diagnosis. I'll invite some other members with lung NETs to join this discussion such as @californiazebra @ce1b and @gmapam

Will the PET scan be done at a Mayo facility?

REPLY
1 reply
Pamela Shirley | @pammy229 | Dec 27, 2024
In reply to @hopeful33250 "@pammy229 Hello Pamela and welcome to the NETs support group on Mayo Connect. This is a..." + (show)
@hopeful33250

@pammy229 Hello Pamela and welcome to the NETs support group on Mayo Connect. This is a good forum to share your experiences and learn from others who share a similar diagnosis.

As you mentioned a lung NET, here are posts where members have discussed lung NETs.
https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/?search=Lung+NET#discussion-listview
As this is a new diagnosis for you, please share as you are comfortable doing so, some of the symptoms you were experiencing that led to this diagnosis. For example, were you having shortness of breath or a chronic cough? Has the size of NET in your bronchial tube been determined?

I look forward to hearing from you again. Will you continue to post with your questions and concerns?

Jump to this post

No wheezing or shortness of breath, however I had coughed up blood maybe 4 times in the last 5 years. I finally asked for a CT. The first bronchoscopy was done in Idaho and the biopsy was benign. I decided to go to Mayo Clinic in Jacksonville; they did a second bronchoscopy and learned it was a NET, grade 1. They punched a hole through the middle of it, and the lower lobe of my lung (which had been collapsed without symptoms) inflated again. They took several biopsies and one piece was 1.2 cm. They did not check any lymph nodes at that time.

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 27, 2024

@pammy229 Hello Pamela and welcome to the NETs support group on Mayo Connect. This is a good forum to share your experiences and learn from others who share a similar diagnosis.

As you mentioned a lung NET, here are posts where members have discussed lung NETs.
https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/?search=Lung+NET#discussion-listview
As this is a new diagnosis for you, please share as you are comfortable doing so, some of the symptoms you were experiencing that led to this diagnosis. For example, were you having shortness of breath or a chronic cough? Has the size of NET in your bronchial tube been determined?

I look forward to hearing from you again. Will you continue to post with your questions and concerns?

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.