The phrase 'lung cancer patient' would most likely lead people to picture a man in his 50s or 60s who has been a heavy smoker for decades. Picturing a young wife and mother of two girls who never smoked would be the furthest thing from our mind. It was for Stephanie Dunn Haney, and she was the one receiving the diagnosis.
"What I thought I knew was that lung cancer happened only to smokers, so it must be their own fault," Stephanie said. "I fell into exactly the same discompassionate and inaccurate traps as so much of the general public."
After coming to terms with her diagnosis, a process Stephanie called "scraping myself off the floor," she began learning about her disease, a process that included interacting with other lung cancer patients through online forums. At the same time, she met with an oncologist, who encouraged her as much by what he did not say than what he did say.
"He never once tried to give me a life expectancy," Stephanie said. "I am sensitive to doctors giving expiration dates to their patients. He also told me that he had many tools to fight the disease and that, while my cancer might be incurable, so were heart disease and diabetes!"
A previous doctor told Stephanie that while working with patients who fight their disease is an admirable quality, he was challenged by her tenacity. He had no idea.
Discovering her voice as an advocate led Stephanie to assisting the National Lung Cancer Partnership, which does fundraising for private research and advocacy training, and the Lung Cancer Alliance, a group that is active in soliciting federal support and developing specific patient support programs. She credited both organizations for focusing on different paths while working toward the same goal. Working side-by-side with scientists when reviewing research proposals gave her the opportunity to share her experiences, which was as important for the scientists as it was for her.
"Frankly, when I started in advocacy, the only area that I thought really wouldn't suit me was as a consumer advocate for research projects, but I have learned to love it," Stephanie said. "Because I don't fit the public's view of what a lung cancer patient must be, I have the opportunity to be heard in a way that many don't. It's incredibly unfair, so I feel a responsibility to speak for all of us."
Stephanie also has worked with the American Lung Association, and was nominated to serve as a peer reviewer for the Department of Defense Lung Cancer Research Program (LCRP).
"Thanks to my peer review experience, I understand more about the disease, more about the research process, and how it works, and why it takes so long!" Stephanie said. "I know that as a non-scientist, I am limited in some ways as to what I can contribute, but my experience has been that I have something different to offer that may be as valuable."
Her tenacity, noted earlier by her first doctor, still exists; however, Stephanie now selectively uses those thoughts and feelings.
"I believe sharing my experience has informed the ideas and work of the other scientific reviewers," Stephanie said. "The scientists and medical professionals who are part of the process look to us for our passion, our perspective, and our common sense. And the very bottom line is we keep them honest - they remember what, and who, they are there for!"