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DiscussionCarcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH
Neuroendocrine Tumors (NETs) | Last Active: Apr 6 9:05am | Replies (48)Comment receiving replies
Replies to "I was diagnosed with this rare condition 6 years ago . I had a persistent cough..."
I too have small carcinoids in my lungs. In August 2022 I had my right upper lobe removed with a small section of my right lower lobe. I have a cough. I was told to enjoy life, not to worry, and have cat scans every 6 months. If the carcinoids grow then they consider treatment
I try to enjoy life but the cough is not fun and I do worry if I shoujd be having treatments now
Hello @rogo and welcome to Mayo Connect and to the NETs discussion group. I'm glad that you found this forum and that you have chosen to share your NETS journey here.
Your doctors are correct in saying that NETs/carcinoids tend to be a slow growing cancer. I have had three surgeries for carcinoids in the upper digestive tract beginning in 2003. I'm sure you are relieved to have your surgery behind you and to be feeling better now.
I would like to introduce you to another member, @melmangen, who also had a lobectomy this year. I hope that she joins this conversation and shares some of her experiences with carcinoids.
What type of surgery did you have and how long was your recovery?