By Corinne Casebeer, as told to Kendall Morgan.
I was diagnosed with stage 1B lung cancer at age 32 in 2014. I found out by accident after falling off a ladder at home. The ER doctors did an X-ray to see if my ribs were broken, and the next thing I knew, the radiologist came into the ER and told me there was a large nodule in my left lung. They couldn’t be sure what it was, so they told me to see a lung specialist.
Because I was so young and a nonsmoker, the lung specialist decided it was best to watch and wait. It stayed
the same for a while before it started growing. That’s when a lung biopsy confirmed it was cancer. I was lucky to catch it early before I had any symptoms. I had surgery to remove most of my left lung. Doctors took out 12 lymph nodes and they all came back clear. They said I didn’t need chemo and the cancer was most likely gone.
But somehow, a year and a half later, scans showed that the cancer was back. It was in both lungs and my brain. I was devastated.
Genetic tests showed that my tumor carried a mutation in a gene called ALK, which was driving the cancer’s growth. At the time, there was just one drug approved to treat my type of lung cancer, which is fairly rare. It wasn’t a cure, but it meant that my life wasn’t over. Most people would have tried that approved drug first, but my doctor knew it wouldn’t do a good job of reaching the cancer that had spread to my brain. She said there was a newer drug being tested in a clinical trial that might work better for me.
A clinical trial can feel scary. Most people don’t know anything about them and at the time I didn’t either. But I knew my doctor was an expert in lung cancer and especially my type of lung cancer. She thought it was my best option. The targeted drug that was available only worked for most people for 1 year before the cancer started to grow again. When you’re young, a year isn’t a lot. So even though it scared me, if my doctors thought I’d get more time with this new drug — that I could possibly live longer by enrolling in the trial — I’d do it.
One thing that was hard was the wait. I could have started on the approved drug right away, but the clinical trial process took time. There was so much paperwork. There were all these steps and scans and bloodwork. When you have cancer and it’s growing, every day feels like a year. But once I got to the trial hospital, everything changed. I got so much care and attention. The nurses were amazing, and I was just really well taken care of. It was a good, safe feeling to know I was being monitored so closely. They were checking for every possible side effect.
Eight weeks after starting the trial, the tumor shrunk by 60%. I was beyond happy. I could breathe significantly easier. A couple months later it had shrunk by 80%. A year and a half after I started on the trial, the cancer suddenly disappeared on scans. I’m now 5 years in. The trial drug worked incredibly well for me — much longer than the first-generation drug most likely would have.
I tell everyone I know with lung cancer to move to a National Cancer Institute (NCI)-designated hospital if you can. That’s because when you have advanced lung cancer, the expectation is that eventually the drugs will stop working. When that time comes, clinical trials will be something to consider. At an NCI-designated hospital, you’ll know your doctors are up to date on the latest treatments and trials. You can do the research yourself, but when you have advanced cancer you are so overwhelmed. It’s best to find a doctor who knows about all the latest options, so they can do that work for you.
Don’t be dissuaded if the hospital is far away. Mine is more than four hours, but it’s worth it. Your local doctor can work with that hospital. There are certain things you’ll have to do there, but the rest can be handled closer to home. And sometimes they’ll reimburse you for travel costs.
I now volunteer as a clinical trials ambassador for LUNGevity to help other people navigate clinical trials. It’s worth the uncertainty and fear to have a chance at a drug that could possibly work better and longer and give you more life.
The clinical trials world looks daunting and foreign, but once you get past that it’s doable and so much more accessible than it first appears. Once you start digging and asking questions, there are so many more options than you think.