I was diagnosed with Stage IV ROS1+ lung cancer in May of 2022 at the relatively young age of 38. Prior to my diagnosis I was a very healthy person – I ate well, exercised regularly and rarely went to the doctor. Because I was generally healthy, I perhaps overlooked a few signs that I’ve since learned I should’ve paid more attention to earlier on. I had swollen lymph nodes in my neck for a few months prior to diagnosis but that was written off by my primary care doctor as a response to cold & flu season. I had continuous pain in my upper back & shoulder blade area which I attributed to my strength training workouts. To this day, I still rarely cough so I never exhibited “traditional” lung cancer symptoms. I had just returned from a weeklong trip to New York for work and found myself feeling short of breath while walking.
As Covid-19 was still going strong I assumed I had finally succumbed to it.
After two trips to the ER and a misdiagnosis of thyroid cancer by an ER physician I found myself in the ICU recovering from emergency surgery to drain more than 2 liters of fluid from around my heart. I’ve since been told that if I wasn’t a “generally healthy” person I likely would not have survived that.
In addition to my pericardial effusion, I also had significant fluid drained from my right lung. While I spent the week in the hospital recovering, the doctors tested the fluids and determined I had lung adenocarcinoma. A liquid & tissue biopsy later confirmed the ROS1 mutation. My doctor suggested I join
a clinical trial as my cancer had spread to my brain and bones already.
I’ve since been on the trial with good success and learning to appreciate the word “stable”. After recovering from my initial hospital stint I’ve made it a goal to get back to working out. I walk at least 4 miles (4 miles for Stage IV) daily, do yoga, pilates and strength training. In addition to my
TKI therapy, I follow alternative modalities like use of the sauna, cold plunge, red light, and meditation. I figure it can’t hurt to try anything that can help me.
For the most part life is pretty normal besides living with this illness. If nothing else my diagnosis continues to remind me that nothing is promised and we need to make the most of our lives while we feel good!