THE BLOG
08/31/2015 05:24 pm ET Updated Aug 31, 2016

Lung Cancer: Why You Should Care

I was supposed to die 11 years ago. My physician sat me down and said my stage 3B lung cancer was going to kill me in a matter of months if I didn't begin treatment immediately. This was after seeing two different physicians, one that told me that exploratory surgery was my only option as the tumor on my upper left lobe, my aorta and subclavian artery was too difficult to biopsy and was crushing my aorta. Such a grim prognosis did not sit well with me. I had spent that last two decades rising through the ranks of the male-dominated oil and gas industry. As the first female President of a Bay Area oil and gasoline company I was used to unexpected challenges. But nothing had prepared me for facing a disease that gave me less than a 5 percent chance of survival. Fortunately, I've beaten the odds.

Being diagnosed with cancer is one of the most terrifying things for anyone to endure, but lung cancer in particular, presents a unique array of challenges. Mass media and past perceptions have branded lung cancer as a "smokers disease" and as a result patients are often left isolated and alone, blamed for their condition. The typical post-diagnosis casseroles, offers to drive to chemo, and well-wishers are few and far between for lung cancer patients because people tend to think you brought this on yourself. The stigma surrounding this disease has had far greater consequence than that however; it has also hindered funding for patient treatment and led to a lack of research. Much is still unknown about the disease's complexity, subsets and ability to outwit drugs, treatments, doctors and patient's mutations mutating.

In the late 1980s, lung cancer surpassed breast cancer as the deadliest cancer for women, yet its survival rate, which averages around 17 percent, has remained almost unchanged. The stigmatization of this disease has discouraged the type of public awareness campaigns and fundraising efforts that led to breast cancer's more than 90 percent survival rate (Brava). Fortunately for me, my search for information led me to an amazing thoracic surgeon at the University of CA, San Francisco, who worked alongside my community hospital's specialists to develop an aggressive chemo/radiation and surgical strategy specific to my strand of lung cancer. It is thanks to their collaborative and dedicated efforts that I am alive today, and it was my gratitude that inspired my commitment to ensuring that every lung cancer patient receive the same customized and multi-disciplinary care that I received.

The frustration and isolation I felt as I struggled to find access to proper treatment during my battle with lung cancer has made me determined to be more than just a fundraiser. That is why in 2006, I decided to do more. With my two daughters, Andrea and Danielle, we founded the Bonnie J. Addario Lung Cancer Foundation (ALCF). Despite being successful businesswomen, both of them decided to put their career goals aside in order to help me achieve my mission. Our goal was to simultaneously address both the misconceptions about lung cancer patients and the deficiency in health care, resources and survival rates. Two years later, we founded the Addario Lung Cancer Medical Institute (ALCMI) in order to facilitate and drive research and work directly to address the void of lung cancer information available today. Our approach is completely patient-centric, and we work with people battling lung cancer worldwide to provide them with free education and support programs, connect them with the best doctors and available clinical trials, and advocate for patients to have a direct say in the decisions that will directly affect both their treatment now and their future health.

A major reason for the dramatic lack of funding for lung cancer care and research is that it is misrepresented as a smoker's disease -- however, there are more than 100 types of cancer and "NEVER-smoker" lung cancer is ranked as number five. It is important that people understand this reality and disregard past assumptions. In an attempt to better understand this particular subset of lung cancer cases, we decided to study the patients afflicted, and soon discovered a frighteningly sizable number of athletic, healthy young women being diagnosed with life threatening cases of lung cancer. To understand why these women were at a higher risk, ALCMI launched a revolutionary new clinical study called the Genomics of Young Lung Cancer Study. It is an international effort that involves several medical centers, hospitals and institutes, aimed at finding a commonality that would explain why all of these fit, never-smoking young women are getting lung cancer. Our hope is that this study will serve as the foundation for future discovery of novel targetable genotypes as well as inherited and environmental lung cancer risk factors.

We've already unearthed groundbreaking discoveries and captured the attention of the global lung cancer community. The Addario Lung Cancer Medical Institute (ALCMI) has been selected to present on the Genomics of Young Lung Cancer Study at the World Lung Cancer Conference in Denver, which takes place early September and is attended by all the top professionals in the lung cancer space. I will discuss this study's findings in more depth in following blog posts.

The patient is the primary stakeholder in the fight against lung cancer. Doctors should focus on the patient first, and build a team of specialists around each specific case. The key to understanding the many complexities of lung cancer is to consider patients as primary sources, and to let their experience inform treatment methods. This is why we developed the Patient Portal in our first foundation, ALCF, where patients can learn about the latest news affecting the lung cancer community, get support from stories shared by other patients and even share their own experiences. At least one patient should be seated at every table discussing research, care and novel treatment programs. The key to unlocking the code to the cure for this disease resides in the patient's unique genome. Like a fingerprint, our genomic profile tells the real story about how to personalize each patient's treatment.

Our novel patient programs and our research initiatives represent the first steps in the journey toward more specialized, informed and effective treatment for lung cancer patients and ultimately chronically managed lung cancer.