Each year, the International Association for the Study of Lung Cancer selects a cohort of people who have personal experience with the disease to become patient research advocates. This year's cohort includes a Harrisonburg resident whose mother is a lung cancer survivor. WMRA's Randi B. Hagi reports.
Kimberly Lester has been an advocate for lung cancer survivors since her mother was diagnosed in 2005. As one of the association's patient research advocates, she'll be trained in the latest lung cancer research, including new treatments coming onto the market.
KIMBERLY LESTER: Now we're being trained to understand a little more of the science behind the research, so that we can explain to others … There's so much happening in lung cancer right now. It's one of the fastest moving areas of cancer research right now. We've had probably three new drugs approved in the past year or so.
Lester will also get to participate in the virtual world conference on lung cancer this fall, where research breakthroughs are often presented before they reach the public – such as some of the new studies being conducted on small-cell lung cancer.
LESTER: It's one of the most deadly. It just grows very quickly and there just hasn't been any research in that area for a long time … I mean, it used to be that a diagnosis of lung cancer was a death sentence, and that has really changed, but it hasn't changed so much for small cell lung cancer. It's still a pretty severe diagnosis to get.
One of the reasons why lung cancer research can lag behind other cancers, Lester said, is the stigma that's associated with smokers getting the disease. But smoking tobacco doesn't mean you deserve a death sentence, and it doesn't account for all cases of lung cancer. According to the American Cancer Society, as many as 20% of people who die from lung cancer in the United States have never smoked or used any other form of tobacco. Other causes of lung cancer include air pollution, asbestos, and radon gas. In fact, much of Virginia, including the Shenandoah Valley, is designated by the EPA as a zone of highest potential risk for radon exposure.
LESTER: There's just sort of this general feeling of, 'well, you know, these people did it to themselves.' But of course, that's not fair. Anyone can get lung cancer. And of course there are so many other diseases that patients' lifestyles contribute to, and we don't judge them nearly as harshly as we do lung cancer.
Lester's mother, Dusty Donaldson, hadn't smoked a cigarette in 26 years at the time of her diagnosis.
DUSTY DONALDSON: I was diagnosed in September of 2005, and I was one of the lucky ones, because mine was early stage, so I had surgery to remove two-thirds of my right lung, and then I had some, what they call adjuvant chemotherapy, just kind of for good measure. And I have been free of cancer ever since then.
She said they actually discovered the cancer by accident. Donaldson went to her doctor for a physical, and told them she had some swollen lymph nodes.
DONALDSON: He started a series of medical imaging and eventually he saw something that looked unusual. And they actually gave me a choice, they said 'we can poke around down there to see if something bad's going on,' he said, 'but I'm pretty confident that you don't have cancer. We can wait a year and check it out next year to see if anything has changed.'
Donaldson agreed to have it checked out sooner rather than later, she admits, because she could use the day off work to study for her MBA.
DONALDSON: If I had waited, I don't believe I'd be here today.
After her diagnosis, Donaldson and her daughter founded the Dusty Joy Foundation to educate and support other lung cancer patients and survivors.
DONALDSON: I really wanted to provide a sense of hope … my doctor was very gracious in helping me to not feel self-condemning and so on. I wanted to really impart that grace to other people. And I'll tell you, Kimberly has been an advocate since my diagnosis … Frankly, she's the one who inspired me to advocate for others as well.
One of the foundation's most popular programs has been an in-person support group, which of course has gone virtual during the pandemic. They also distribute "hope totes" to cancer centers all over the country – sort of a care package to a newly diagnosed lung cancer patient.
LESTER: I think it helps to make them not feel alone and isolated, and just to know, hey, there's a community here. There are people who are cheering for you. There are people who are actively fighting for more research funding.
Besides gathering survivors together in solidarity, Lester and Donaldson also hope their work will encourage people to get screened for the disease before it's too late.
DONALDSON: Lung cancer is apolitical. It hit Ruth Bader Ginsburg. It also hit Rush Limbaugh. And what we really want to impress upon people is that anyone can get lung cancer, and no one deserves it. We understand that and we just try to reach out to people so they can get early detection through screening, and also so they can get connected to people who have been on a similar journey, so that it might go easier on them.