Let’s face it. What we know about lung cancer is grim. It is the leading cause of cancer deaths in the United States for both men and women, and more than half of those with lung cancer die within one year of being diagnosed. The five year survival rate is only 18.6 percent, so that means that out of 100 people diagnosed, 82 of them don’t make it. The data alone is enough to be discouraging, but couple that with the stigma attached to the disease, and the people who have it, and the public perception about lung cancer becomes extremely negative.
The stigma attached to lung cancer comes mainly from the connection the disease has to smoking. For more almost seventy years now, we’ve known that lung cancer is a risk factor of smoking. Anti-smoking and tobacco campaigns have been successful in making sure the public understands that if we don’t want to get cancer, we shouldn’t smoke or use tobacco products. The good news is that as smoking rates have decreased, so have lung cancer rates. The bad news is that as lung cancer became known as a “smoker’s disease”, people began to believe that if you got lung cancer, you were to blame. As a result, lung cancer patients may feel that they receive less sympathy from their healthcare providers and others, and feel compelled to hide their condition causing them to suffer from guilt, anxiety, depression and isolation. Patients suffering from a stigmatized disease also may avoid or delay seeking treatment or a second opinion, and may receive lower quality of care. In addition, the clinical guidelines, diagnostics, and treatments for lung cancer aren’t as comprehensive as they are for the cancers without stigmas attached. Further, there is less research, data, and funding about how to increase lung cancer survival rates.
Often, it is the survivors of a disease, or family members who have lost a loved one, who form the advocacy groups, drive the fundraising efforts, and are the proponents for research. That hasn’t seemed to be the case for lung cancer for a couple of reasons. First, the stigma attached to lung cancer prevents survivors from speaking up because of the shame and guilt associated with having the disease. The stigma also appears to carry over to family members and others, such as celebrities and community leaders, who don’t feel comfortable advocating for those who are perceived to have caused their own illness. Secondly, lung cancer has a low survival rate, and, therefore, fewer survivors to lead the charge.
In order for the fight against lung cancer to have some of the same advances that less stigmatized cancers have, the public awareness needs to go beyond the labeling of lung cancer as a “smoker’s disease.” People who have never smoked, and those who quit many years ago, get lung cancer. Lung cancer can also be genetic. There are many risk factors for lung cancer in addition to smoking. They include: being exposed to secondhand smoke, asbestos, arsenic, chromium, beryllium, nickel, soot, or tar; exposure to radiation therapy to the breast or chest, radon, and imaging tests such as CT scans; living where there is air pollution; and a family history of lung cancer. While we don’t want to diminish the risk of smoking and the benefits of giving it up, it is important to note that not all smokers get lung cancer, and not all people with lung cancer are smokers.
Despite the stigma and negative public perception, there are organizations such as the American Lung Association and Patient Empowerment Network who are working to reduce the stigma of lung cancer and raise awareness about the disease. The PEN Living Well with Lung Cancer series is a live-streamed webinar program where patients, and their family members and caregivers, have the opportunity to interact with experts in the lung cancer field. The programs include panel discussions and a question and answer session. The program is recorded and made available through our website. PEN also provides town meetings and conference coverage with topics pertinent to those affected by lung cancer. Through our Notable News posts on our blog, we strive to provide patients with information about the latest advancements in all cancers, including lung cancer. This month you’ll discover that there is good news about lung cancer, thanks to new findings about sugar and cancer’s attraction to it. You can find that information and other updates here.
It is important for lung cancer patients, and all cancer patients, to maintain focus on the good news and to have hope. Every 2.5 minutes, someone in the US is told that they have lung cancer. Wouldn’t it be wonderful if they could also be told that there is hope?
Jennifer Lessinger is a professional writer and editor who learned the value of patient empowerment during her struggle with a hard-to-diagnose and complex endocrine disorder.