← Return to Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Discussion
Comment receiving replies
@rogo

I was diagnosed with this rare condition 6 years ago . I had a persistent cough and got out of breath easily . After a lung biopsy , I was diagnosed with multiple carcinoids . I have been in the care of excellent doctors at Princess Margaret Hospital in Toronto , a world leading cancer hospital . I was told no treatment, just Ct scans and X-rays every 6 months to monitor these carcinoids . Several doctors assured me this is a very slow growing condition , and the better of all possible cancers , with excellent prognosis and long life . Three months ago , they noticed one of the carcinoids started to grow . After much deliberation, they suggested I remove a lobe of my lung . They told me I could do it now or later in time . As I am 70 , I chose to do it . It was a very unpleasant surgery , but it is done and 3 months later I am perfectly fine . I will have to continue to monitor the other small carcinoids the rest of my life . Hopefully , what they told me is true , that these carcinoids rarely spread ,and only grow at a very slow rate . They told me I have many more years to go . I would love to hear other experiences.

Jump to this post


Replies to "I was diagnosed with this rare condition 6 years ago . I had a persistent cough..."

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?