I’m a 43 year old mother and wife. I have advanced non-small cell lung cancer (NSCLC), Adenocarcinoma and I am ROS1+.
I’ve never smoked or lived or worked near smokers.
In fact, I’m something of a health nut and I was seemingly very fit (I taught indoor cycle & other fitness classes up until I got too sick in mid-December 2013). I have degrees from UC Berkeley and UCLA that I don’t use for any practical purposes; mostly I’m a stay-at-home mom who enjoys fitness, photography and other creative pursuits, good books and bad TV.
My diagnosis took several months. In the Fall of 2013, I was struggling with what I thought was a bad cold with typical symptoms (congestion, cough, aches). I had a chest X-ray where the MD declared my lungs clear, told me I had a viral infection and sent me home with an Rx for codeine cough syrup. It didn’t help, so I went back to the doctor a few weeks later. This time the doctor told me I had irritated airways and gave me an Rx for an albuterol inhaler and a Z-pack of antibiotics “just in case.” Despite the meds, the cough persisted, and in fact I started coughing up a bit of orange stuff (blood), so I went back to the doctor a third time. Again the doctor told me that it was irritated airways, but upped my prescription to steroids, giving me an Rx for an Advair inhaler, and then prednisone. The cough continued to get worse. I went for another X-ray and was told I had pneumonia. Finally, in January 2014, I took myself to see a pulmonologist who sent me to get a chest CT that very day. Upon seeing the results, he scheduled me for a lung biopsy asap.
On January 10, 2014, I had a lung biopsy and was diagnosed with Stage 4 Non-Small Cell Adenocarcinoma. I was admitted to the hospital and started aggressive chemotherapy 2 days later. Scans of my bones, liver and brain showed no evidence of spread beyond my lungs.
A few weeks after beginning chemotherapy, I received the results that I tested positive for the ROS1 fusion. Since I’d already started chemo, I was advised to stick with it until I developed a resistance. After 8 months of chemotherapy, I switched over to Xalkori, the targeted drug that works very well on the ROS1 fusion. I have been stable on Xalkori since September 2014.
My story of a misdiagnosed nagging cough for weeks and months on end is a common one in the lung cancer world.
I share the details of my months of misdiagnosis in the hope that it might help others catch their lung cancer earlier. If I had known then what I know now, I would have pushed for a chest CT much sooner. Lung cancer does happen to people who don’t smoke. If you have an unexplained cough for more than three weeks, ask your doctor for a chest CT. It could save your life.