The Stigma of Lung Cancer

Jyoti Patel, MD, Cancer.Net Associate Editor for Lung Cancer
August 21, 2014
· Jyoti Patel, MD

For years I have cared for patients with lung cancer who suffered from the stigma surrounding the disease. I have watched patients courageously fight, endure treatment toxicity, and come to terms with the fact that their disease would ultimately be fatal all on their own, primarily because of the shame that they felt. They, and many others, felt the disease was somehow self-inflicted. They felt guilty for putting their loved ones through such a difficult journey, one they felt they had brought upon themselves. It’s hard for me to believe that anyone could feel that such a deadly disease was somehow deserved.

What many people don't realize is that over half of all people who are newly diagnosed with lung cancer either have never smoked or are former smokers, many of whom quit decades ago. Tragically, the stigma associated with lung cancer has translated into a massive inequality in research funding. Lung cancer receives a fraction of federal funding compared to other common cancers, such as breast cancer. The difference is staggering and has a “spill over” effect—fewer dollars attracts fewer researchers which leads to fewer breakthroughs.

As a medical oncologist who focuses on patients with lung cancer, I was asked if the same stigma affects doctors in the field. When someone who is not a doctor asks me what I do, I often get silence after a hasty, “You picked a tough one”, when I explain I care for patients with lung cancer. I usually fill the silence with an explanation of the extraordinary gains the scientific and medical community has made in recent years with the advent of targeted therapy, widespread testing for genetic mutations, detection of early disease, and integration of immunotherapy into treatment. For a subset of patients, lung cancer has become a controlled and chronic disease, but it still doesn’t get away from the fact that lung cancer remains a difficult disease for most. Often, after the silence, someone tells me that they have lost a loved one to lung cancer. It is no surprise that so many individuals have been devastated by this disease. Lung cancer remains the deadliest cancer, responsible for more than 25% of all cancer deaths. It kills roughly twice as many women as breast cancer, and almost three times as many men as prostate cancer.

Many patients with lung cancer are older, have other medical conditions, and still don’t have a genetic signature that we can effectively target with current treatments. I have to admit, it is often tough. I owe much to those who were committed to studying lung cancer when our understanding of the biology of this disease was in its infancy. Their work demonstrated that chemotherapy improved survival and quality of life for patients with lung cancer. They developed multiple collaborative groups to better refine the treatment of early-stage disease and worked together to develop screening tests. In the early days (only a decade and a half ago!), survival improvements that were exciting were often measured in weeks. Those steps are certainly small, but they are cumulative when they build upon foundational science and work.

When I was attracted to lung cancer in the early days of my fellowship, targeted therapies were just emerging, and one sensed that a revolution was coming. My patients cemented my interest in the field—these patients suffering from the burden of such a deadly, and often divisive, disease stimulated my belief that we had to do better. Their courage and humility were inspiring, the way families came together against this brutal disease was motivating, and the doctors that cared about this disease were truly encouraged by the gains made.

As a thoracic oncologist, I often face incredulous disbelief from others in different medical fields that I chose to focus on lung cancer—I care for patients who are medically complicated; I face repetitive loss; and in the early years, success was uncommon. Even in the medical community, we often face a therapeutic nihilism, an ingrained skepticism regarding the worth of therapeutic agents for lung cancer. Historically, most treatments were expensive, toxic, and only marginally effective. These biases have led to delays in screening uptake, referrals, and diagnosis.

We’ve come a long way, and we certainly have a long way to go. We can’t make real progress until we are able to effectively diminish the stigma that surrounds lung cancer and move forward in a positive way.