The Lung Cancer Community Speaks Out

July 17, 2013

During a public meeting at the Food and Drug Administration (FDA) last month, a lung cancer survivor shared her experience. When she was diagnosed years ago, the first thing her doctor said to her was, “How should we begin your smoking cessation program?”

The woman had never even been a smoker—just like one out of every five people living with lung cancer.

She then pointed out that even if she had been, 60% of people diagnosed with lung cancer have already quit smoking, and many long-time smokers became addicted when they were just teens—and for many, that was before government warnings and stricter laws on advertising.

But more importantly, she pointed out, regardless of what someone may or may not have done to put themself at a higher risk for lung cancer, experts say that the stigma surrounding the disease has had an effect on public opinion, leading to a long history of some of the lowest research funding among other cancer types. On top of that, since lung cancer is one of the more deadly cancers, there are also fewer self-advocates to create a movement and demand more attention for their cause.

Stigma surrounding lung cancer was just one of the topics discussed at the FDA’s Lung Cancer Patient-Focused Drug Development Meeting, one in a series of disease-specific meetings held at the Agency. The purpose of these meetings is to create a more systematic approach for the FDA to obtain patients’ input on specific disease areas, including their perspectives on their condition, its impact on daily life and available therapies. Patients and advocates came together at the FDA’s White Oak, MD campus on June 28 to share their experiences with lung cancer. In attendance were people from all places in the cancer journey—from those newly diagnosed to longtime survivors, to caregivers and other advocates.

At one point in the meeting, people with lung cancer were given a scenario surrounding a hypothetical treatment option that had extended patients’ lives an average of two years, but carried along with it some particularly harsh side effects. Participants voiced their opinions on whether or not this treatment would be worth it to them, given the impact it could have on their quality of life.

Here at the Cancer Support Community, we’ve done research to better understand the experiences of people living with non-small cell lung cancer. In an abstract presented at the annual American Society of Clinical Oncology meeting, our Research and Training Institute presented findings from a qualitative study conducted through focus group and phone interviews.  Of the people surveyed, 84% said that physical symptoms were the most important factor to drive their treatment decision making about life-saving therapy.

Want to give your perspective on cancer? If you have ever had a diagnosis of any type of cancer, we invite you to participate in our Cancer Experience Registry so that your input can be used to improve programs for people impacted by cancer.