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Any advice for someone recently diagnosed with NETs?
Neuroendocrine Tumors (NETs) | Last Active: 1 hour ago | Replies (14)Comment receiving replies
@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?
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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.