David C., VA

Lung cancer was never on my radar. I’m young; still in my 30s. As a former Division One athlete, I’ve been active all my life and have remained active through sports and regular exercise. I’ve also never smoked a single cigarette in my entire life.   

So, when I felt a dull pain in my rib in June 2022, I didn't think anything of it. I thought it was an adult hockey league injury and politely dismissed the wise advice of my wife, Lisa, who urged me to get it checked out. It was only after I noticed a sharp pain at the deepest part of my breath a few weeks later that I saw a doctor.

After a misdiagnosis (walking pneumonia), an understated prognosis (stage 3 (III)), and a botched biopsy (tissue sample didn’t have evidence of cancer) at the regional hospital over the course of a few months, I transferred care to Johns Hopkins. As someone who grew up in Baltimore, Johns Hopkins was always considered the gold standard for healthcare. 

On November 3, 2022, within a week of first seeing a thoracic surgeon at Johns Hopkins, a video-assisted thoracoscopy surgery (VATS) procedure immediately confirmed the presence of cancer, with multiple spots in my right lung, lymph nodes, and a pleural effusion. Further biomarker testing determined that it was ALK positive lung cancer, and after a second opinion at Memorial Sloan Kettering, I started Lorlatinib.

The diagnosis completely turned my world on its head. At the time, my son, Ethan, was only 5, and my daughter, Liv, was only 2. After months of scans, blood tests, appointments, second opinions, insurance, and scheduling, my wife and I just wanted to get back to our pre-diagnosis routine.

All of this was happening as I was juggling a fast-paced career and two energetic kids. My wife and I decided to tell only those who needed to be “in the know” about the diagnosis like close family, friends, and my team at work. We kept it a secret from nearly everyone. A terminal diagnosis didn’t fit within the invulnerable image I had meticulously curated and protected my entire life. As a proud male, I was too ashamed and scared to reveal my new reality.

The pressure of hiding a terminal diagnosis eventually became too much. Through the process of writing and taking time off from work, I ultimately came to an acceptance of my illness. I eventually decided to share my diagnosis openly with my network because I wanted to feel less burdened. 

I sent a mass email to more than 400 family, friends, colleagues, clients, and professional partners. In the email, I gave them my quick story and basic treatment information. I asked for their understanding and their awareness. I told them that I was not asking for their pity or their sadness, or for them to tell me to be strong or “you’ll beat this.” I told them just to say, “I’m thinking about you,” If they didn’t know what to say. I also gave them information about ALK positive lung cancer and the unwarranted stigma associated with lung cancer. 

Being open and vulnerable allowed me to live more freely without the burden of a secret. It allowed me to reconnect with those I’d lost touch with and to deepen many relationships. It gave me a community of supporters, and in sharing my own struggle, many others shared theirs with me, which made me feel less alone on this challenging journey.

I decided to share my diagnosis because I wanted to become more of an advocate and less of a patient. I had been inspired by the ALK positive patients before me who have spoken out and have pushed for more research—research that has made a meaningful impact, research that has literally added years to people’s lives, and research from which I’m keenly aware that I am benefiting. 

So, in November 2023, for Lung Cancer Awareness Month, my wife and I decided to play our part. Through our #SweatForBreath fundraising and awareness campaign, we were able to raise almost $200,000 from 750 donors for my oncologist, Dr. Vincent Lam’s ALK positive research fund at Johns Hopkins. We are currently in the process of establishing The Sweat For Breath Foundation through a fiscal partnership with Players Philanthropy Fund (PPF) to piggyback off those efforts and to broaden our impact.

It is my belief that more research is more life, and I want to support efforts to better understand and advance treatment options for this disease.