In September of 2014 I went in for a routine eye exam. My eye doctor discovered a spot on my eye that she wanted me to have checked out. The next day she sent me to a retina specialist who told me the spot on my eye was a tumor. He sent me to an ocular oncologist. The oncologist ordered a chest CT scan, a mammogram, a brain MRI, and then a PET scan. The scans showed that I had a tumor in my lower left lung, lymph nodes in my lungs also lit up on the PET scan, along with a couple spots on my bones. On Christmas Eve, I got the phone call that said I should have surgery to remove the tumor in my lung.
The surgery confirmed my biggest fear, it is cancer.
How could I have stage IV lung cancer? I am 32 years old, I was a member of my college track team, and I have NEVER smoked anything, never even tried anything.
I was referred to the best oncologist in the area for lung cancer. She was just as shocked as I was that I had lung cancer. She KNEW I must have a mutation, the only question was, which one? She ordered tests on my tumor for the most common mutations, they came back negative. While we were waiting for test results, we decided to start chemo. I went through 3 rounds, during which time I lost all of my hair. My doctor ordered the next test, which showed some high levels, promising for a mutation. After one more test, it was finally confirmed, I had a mutation. I have the ROS1 gene mutation, a first for my oncologist. Fortunately ROS1 has a targeted treatment that I have been on since March 2015.
It has been great, I don’t really have any side effects, and most importantly I feel healthy!
The only draw back is, I have been told the treatment will definitely fail at some point but we don’t know when. It is hard living with that fear and not knowing what’s next. My hope is that science and research will stay one or two steps ahead of me so I have something new to try when the first round treatment fails.
Gwen Orilio, age 32, mother of a happy 2-year-old girl, high school math teacher, varsity track and field jumps coach.