What It's Like to Have Stage IV Cancer in Your 30s
Several times my oncologist suggested “putting my affairs in order.”
The story of Jessica Steinberg, as told to Sara Lindberg
There's never a good time to find out you have cancer.
The call came the same week that I had filed papers for divorce, and in an instant, my life changed. I remember shrieking into the phone, "are you kidding me, do you know what I am dealing with right now?"
Of course now, I realize that what I was dealing with was shock and confusion from a message I was not expecting to receive.
The diagnosis was lung cancer. I was 39 years old, never smoked, athletic, and overall very healthy. My two sons were so young: kindergarten and third grade. I was a newly single mom and all I could do was panic. I started googling survival rates and found out that I had a 3 to 5 percent chance of surviving five years.
Panic turned to fear as I realized that I was not going to be able to raise my boys. The momma bear in me started to roar, and in that moment, I made a decision to take cancer on. I was ready to fight for my boys.
At diagnosis, it was thought that I had a localized tumor and that surgery would likely take care of it. When I woke up in intensive care, I learned otherwise. The cancer was more extensive than they had realized and I quickly started infusion chemotherapy and concurrent chest radiation, which had been standard protocol for the past couple of decades. Despite the treatment, I quickly progressed to a diagnosis of stage IV advanced metastatic disease. I had whole-brain radiation while on the next line of infusion chemo.
There were several times my oncologist suggested "putting my affairs in order," and each time, I chose not to listen. There was no way I was giving up. My goal was to get my boys through high school.
During the time of my active fight, something astounding was happening in the field of lung cancer research and treatment: Specific gene mutations were identified that were responsible for driving the growth of lung cancer. My breakthrough moment came when it was discovered that I had the ALK+ mutation. It meant I could have treatment targeted at my particular genetic mutation.
After targeted therapy, the cancerous lung lesions that were always noted as "innumerable–too many to count," were gone. The bone metastasis, gone. The brain mets, just a shadow indicating dead cancer cells. I had almost 18 months of blissful times, loving my boys, working, and getting involved in cancer advocacy.
All was great until a persistent, strange headache would not go away. I made excuses for awhile, and then requested a brain MRI. While meeting with my oncologist to go over the results, I found out that my biggest fear was true: The cancer was back.
After being informed that the only potential treatment would likely involve some cognitive impairment, I decided that anything that compromised my parenting was not going to work, and I needed to do something different.
So I enrolled in a clinical trial for another ALK+ targeted therapy—this time one that could cross the blood-brain barrier using Alecensa (alectinib), a prescription medicine used to treat people with non-small cell lung cancer that has spread to other parts of the body.
Now, I am coming up on three years of scans showing no measurable disease. I don't worry anymore about dying soon.
I know the cancer will likely figure out a way to beat my current treatment, but I also know that the research and treatment development is happening so fast that when I need it, it will be there. People think I'm crazy when I say that it's okay that I have cancer. But it's kind of true. Because while it has given me some of the worst moments of my life, it's also given me some of the best.
Cancer gave me the opportunity to teach my boys about facing challenges and dealing with adversity. It gave me the chance to show them what dedication, perseverance, and hope looks like. I realized that I could show my boys that "it's not what happens to you, it's what you do with it that matters," a phrase I'd used most of my adult life.
I have always had an immutable belief that a positive outcome is ahead. And while that may not be a magical cure, it sure has made the ride better. And to be clear, this hope is not denial; it's educated optimism. There has never been a time in the world of lung cancer where having hope is so warranted. Treatments have changed so much in just the time since I've been diagnosed.
Cancer has also taught me about the power and love of my friends, family, and community. They brought food, folded laundry, and cleaned my house. When I was in the hospital after surgery, or found myself exhausted after long treatment days, or was just so sick that sleep was the only option, my boys always had someone who loved them close by.
Ultimately, cancer has taught me to be my own best advocate in my treatment and healthcare. Because the reality is, if you have lungs, you can get lung cancer. Learning to be a self-advocate has allowed me to work in partnership with my doctors and care team, connect and participate in my cancer community, become a board member of Caring Ambassadors, and advocate in the medical and political arenas.
Getting lung cancer actually became a calling for me. A call to spread education and awareness about lung cancer and combat the stigma that has been perpetuated by lack of knowledge. I got invited to the StandUp2Cancer telecast to spread the message of hope. SUC2 raises funds to accelerate the pace of research to get new therapies to patients quickly and save lives now. Ironically, I lost my voice the night before the SU2C telecast—so Bradley Cooper stepped in and told my story instead of me. (No actually. Here's a video.)
This call to be bold and promote patient empowerment in the hopes that I can help put a new face on lung cancer will hopefully inspire others to keep moving forward and face their challenges. I'm setting my goals much higher now. I'm confident I will meet my grandchildren.