By the time my non–small cell lung cancer was diagnosed in 2004, it had already reached stage IIIB, and I was told there was little that could be done for me. I was 56, a wife, the mother of 3 children, and at the peak of my career as president of Olympian Oil. Although my aunt, brother, and grandfather had all died of lung cancer, I knew very little about the disease, and the diagnosis came as a shock. In fact, the symptoms I had been experiencing—shortness of breath and a pulsating feeling in my chest—were initially believed to be caused by a heart problem but were actually the result of a tumor in my left lung, which had wrapped itself around my aorta, making the cancer difficult to treat.
At first, exploratory surgery was recommended to see how the tumor might be disentangled from my heart.
Fortunately, before a final decision was made on how to proceed, I got a second opinion with an amazing thoracic surgeon.
“What do you want from me, Bonnie?” he asked, as I sat across from him. “If I’m going to die of this cancer,” I told him, “I don’t want it to be because I did nothing.”
“With the help of many partners and collaborators, I am thrilled to be making a contribution to altering the future of lung cancer…and improving the lives of survivors.”— Bonnie J. Addario
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Within days, a meeting was arranged with several medical specialists, including a cardiothoracic surgeon, a vascular surgeon, and an oncologist, to determine the best viable treatment option. It was agreed that if intensive neoadjuvant therapy, including weekly infusions of chemotherapy and daily rounds of radiation therapy, could shrink the tumor and create enough space around my aorta to safely remove the tumor, they would proceed with the surgery.
Fortunately, the treatment was successful in decreasing the size of the tumor, and the decision was made to move forward with the surgery. Although the operation was risky and took 14 hours to complete, I emerged from it, not only cancer-free, but with a new life purpose.
Fulfilling a Promise
Just how dire my situation was and how difficult the treatment would be didn’t really kick in until I was sitting in the infusion chair for my first round of chemotherapy. That’s when it really struck me that I have lung cancer and that my prognosis wasn’t very good. On that day, I made a promise to myself that, if I made it through this knothole, I would work to help other people diagnosed with this terrible disease.
Like many patients diagnosed with cancer, my first inclination was to get on the Internet and learn everything I could about lung carcinoma. That was a big mistake. There is so much misleading information online and in social media that it is easy to become overwhelmed and confused. I was fortunate to find experts in the field gave me reliable information and steered me to treatment that saved my life.
The experience led me, in 2006, to launch the patient-centered Bonnie J. Addario Lung Cancer Foundation to advance innovative research in lung cancer, provide free education and support resources to patients and their families, and help erase the stigma surrounding this disease. The foundation has since joined forces with the Lung Cancer Alliance to become the GO2 Foundation for Lung Cancer (https://go2foundation.org), whose goal, among others, is to double the 5-year survival rate from 20% to 40% by 2025.
Understanding Early-Onset Lung Cancer
Lung cancer is a pervasive disease in the United States, second only to prostate cancer in men and breast cancer in women. This year, about 236,000 people will be diagnosed with the disease, and nearly 132,000 will die.1 Worldwide, lung cancer is the second most common cancer after breast cancer, affecting more than 2 million people, and the leading cause of cancer mortality, with more than 1.80 million deaths each year.2
The problem is so staggering, it will require a global effort to solve. So, in 2008, we launched the Addario Lung Cancer Medical Institute (https://alcmi.net/about-us/), an international research consortium of more than 21 academic and community institutions whose primary focus is to accelerate novel research advancements, especially for younger adults. Although lung cancer is most commonly diagnosed in people aged 70 and older, approximately 13% of people diagnosed with lung cancer are younger than age 50, are mostly female, have never smoked, and have a more advanced stage of disease at diagnosis.3
I first became aware of early-onset lung cancer in 2009 after hearing about Jill Costello, a student at the University of California, Berkeley, and an athlete diagnosed with the disease when she was just 21. She died the following year. It was unimaginable to me that someone so young and healthy, who never smoked, could be diagnosed with a cancer most often associated with older age and smoking. I called all the medical experts I knew to ask about lung cancer in young adults and was told, emphatically: “There is no such thing as young-onset lung cancer.” Of course, we now know that is not true.
Determined to understand the onset of disease in these young adults, in 2014, the Addario Lung Cancer Medical Institute launched an international prospective study of patients aged 40 and younger at the time of diagnosis. The aim of the study was to learn whether the prevalence of targetable alterations is higher in young adults with lung carcinoma than in the overall lung cancer population. In our study of 133 patients across 5 continents, we found that the overwhelming majority of patients, 84%, with adenocarcinoma at any stage had targetable genomic alterations. Among patients with stage IV adenocarcinoma, 85% had a targetable alteration, which is higher than historical expectations for the general population.4
We are now conducting an epidemiology study (https://alcmi.net/research/eoylc/) to determine what these young people have in common and why they are developing lung cancer.
Making a Difference
I have had a blessed life. I have a wonderful husband, three great kids, and, now, several adorable grandchildren. Before my cancer diagnosis, I had work that I loved and found fulfilling; however, later I came to realize there was something more I was supposed to be doing. Being a patient advocate to put patients’ concerns first was it.
What we have learned is that early detection saves lives, and comprehensive genomic testing puts patients on the right drug or trial for their unique lung cancer. It is important for physicians to order the complete test for patients. Accurate genomic information is critical to achieve personalized care for patients and give them a chance at the best outcome.
This is the reason why “patients first” has been my mantra since I was diagnosed with advanced-stage lung cancer 17 years ago and decided to dedicate my life to patient advocacy. With the help of many partners and collaborators, I am thrilled to be making a contribution to altering the future of lung cancer, especially its effects in young adults, and improving the lives of survivors. I couldn’t have imagined a more satisfying life.
1. American Cancer Society: Key Statistics for Lung Cancer. Available at www.cancer.org/cancer/lung-cancer/about/key-statistics.html. Accessed August 23, 2021.
2. World Health Organization: Cancer. Available at www.who.int/news-room/fact-sheets/detail/cancer. Accessed August 23, 2021.
Disclaimer: This commentary represents the views of the author and
may not necessarily reflect the views of ASCO or The ASCO Post.
Editor’s Note: Columns in the Patient’s Corner are based solely on information The ASCO Post received from patients and should be considered anecdotal.
Ms. Addario lives in San Carlos, California. She is the Founder of the Bonnie J. Addario Lung Cancer Foundation and the Addario Lung Cancer Medical Institute, Cofounder and Board Chair of GO2 Foundation for Lung Cancer, and Coauthor of The Living Room: A Lung Cancer Community of Courage (Post Hill Press, 2021).