It’s an unusually warm day for Charlotte in October, but these five women seem too busy having fun to notice the heat. There’s Joy Divine, Angie Madigan, Linda Blum, Paige Black and Doris Castevens. They’ve never met before, yet their conversation is easy and their laughter is, too. They talk about their families: parents, kids, grandkids. They talk about their hobbies: yoga, golf, Corvette racing. But then the laughter slows and they talk about what they have in common, what brought them together today: they’re all women with Stage IV lung cancer who have never smoked.
Their diagnoses surprised them, as they would surprise most others who don’t associate lung cancer with active, non-smoking women. Lung cancer is largely viewed as a disease for older, inactive men who have smoked all of their lives. These five women represent the reality: lung cancer can strike anyone of any age and gender, whether they smoked or not.
Lung cancer still has no cure. It is cancer’s top killer for men and women, and more people in the United States die of lung cancer than from breast, prostate, colon, liver, kidney and melanoma cancers combined. Regardless of smoking history, one in 17 women will develop lung cancer in her lifetime, as will one in 14 men. But until awareness increases, the facts of lung cancer remain misunderstood, its risks underestimated, and its patients fighting stigmas along with their disease.
A Sudden Sickness, An Inexplicable Diagnosis
The youngest woman in the group is Joy Divine, 41. The months preceding her diagnosis in 2015 were among her busiest. She balanced a job in finance with a burgeoning career as a personal trainer, which often meant 14 to 16 hour days. And just a few months before her diagnosis, she ran a 10K. Then one day in early July she had a cold she couldn’t shake. Two days later, she had emergency heart surgery. Eleven days later, a doctor walked into her hospital room with a diagnosis: Stage IV lung cancer.
The news came as a shock to Joy, who has no apparent risk factors for the disease. For one, she doesn’t smoke. Never has. For another, there’s her age. And then there’s her attention to personal health. She’s an exercise buff, enjoying few things more than hitting the gym with friends and a great workout playlist.
“I was sad and a little confused by the idea that someone so healthy can get stage four lung cancer,” Joy says. “But immediately I thought, 'What's the next step? How can I fight it?'”
Dispelling the Stigma of Lung Cancer
“Did you ever smoke?”
It was often the first question Joy would field after telling others she had lung cancer. When she would reply that she didn’t smoke, Joy would then get questions about her eating habits and lifestyle choices.
“I think people need something to blame. So they blame smoking,” Joy says. “Then they ask me, ‘What have you been eating? Where have you been traveling? What have you been exposed to?’ They need to have a source for it – because otherwise it makes it real and they have to accept that lung cancer is random.”
Stereotypes about the disease persist – mainly that lung cancer can only come after a lifetime of smoking. And with that, judgments persist that lung cancer comes with culpability. This creates a stigma that interferes with building awareness of lung cancer as the threat it really is, as well as a stigma that impacts patients who are already in the fights of their lives, regardless of its cause.
“Stigma is a brand of disgrace, and there is a stigma associated with lung cancer,” says Kathryn F. Mileham, MD, an oncologist with the Levine Cancer Institute. “Unfortunately, stigma impacts awareness, funding and support. It also impacts the person affected by the disease possibly by delaying treatment, increasing stress and reducing support.”
Dr. Mileham shares sobering statistics about the disease. Every day, 433 people die of lung cancer, the equivalent of a jumbo jet crashing daily. Of women who are diagnosed with lung cancer in the United States, 19 percent have never smoked. Worldwide, that share increases to 50 percent.
But Dr. Mileham shares encouraging news as well. New targeted therapies are creating better results for lung cancer treatments with fewer side effects. Immunotherapy is seeing significant advancements, either alongside or instead of chemotherapy. Dr. Mileham says that if she was asked to give a presentation about advances in lung cancer treatment seven years ago, “it’d be a pretty stale slideshow.” But now, she says she could give an amazing presentation every six months with updates about advancements that are dramatically improving the lives of lung cancer patients.
“I don’t know what lung cancer will look like a year from now,” Dr. Mileham says, “because I couldn’t imagine where we’d be today.”
Joy is among those benefitting from these advances. Because her tumor has a certain genetic mutation, ALK+, she’s able to control her cancer with a targeted therapy, a pill called Alectinib. Through targeted therapies and radiation, she’s controlled her tumors for two and a half years. Joy says that she owes her current health and well-being to these new therapies; had she gotten lung cancer just five or ten years earlier, she said she likely wouldn’t be here today. Such are the rapid improvements in treating this disease.
Joy’s experiences have meant a forced education for her about the realities of lung cancer.
“I've learned to lose my own stigmas, that lung cancer can look like anybody. I've learned that a major reason that funding is low for lung cancer is due to stigma, that the community awareness has got to come up in order to save lives,” Joy says. “Before I got lung cancer, I never saw snazzy water bottles or t-shirts or key chains shouting out awareness for lung cancer. I never saw celebrities or athletes advocating for lung cancer, wearing shoes or jerseys in support. No telethons. Nothing. But look at what pink has done for breast cancer.”
Now, she wants others to learn about lung cancer, too. She travels around the country speaking about the disease, partnering with the Lung Cancer Initiative and the American Lung Association.Meeting Angie, Linda, Paige and Doris gave Joy the opportunity to talk with other women in Charlotte facing Stage IV lung cancer. By sharing their stories with each other – and by sharing their stories with their friends and families – they’re spreading awareness of the realities of lung cancer as well as the strength of those fighting it.
“Every story still makes me just as shocked as hearing my own story. It makes me wonder why so many healthy people are getting lung cancer,” Joy says. “But I’m encouraged by all of us. Somehow our bodies endure the most amazing hardships and still manage to pull us through. This sassy spirit inside us allows us to take one more step, to be even more determined. It's just incredible what we can do.”
The Faces of Lung Cancer
These women never imagined they would get lung cancer. Now, they’ve learned a great deal about the realities of the disease and want to share them – both the difficult and the encouraging – with others.
“Before I was diagnosed, I assumed you had to be a smoker to get lung cancer. To be told I have stage four lung cancer was devastating. But I tell people now – I am the face of stage four lung cancer. This is something you can live with." — Angie Madigan
“People almost always ask if I was a smoker. I have never been a smoker, but if I had been, I still don't feel like that's an appropriate question. Nobody asks a woman with breast cancer if she used hormone replacement therapy or took birth control pills. Everyone wants to know what caused my lung cancer ¬¬– so do I! I don't know, and my oncologist doesn't know.” — Doris Castevens
“I will not let cancer define who I am. I will get the most out of every day that I can. I have got to keep living my life, in spite of this nasty disease. My doctor will always have a plan, and I embrace it with a positive attitude. It's amazing how strong we can be, in spite of our diagnosis.” — Linda Blum
“I want people to understand that anyone can get lung cancer. Smoking is not the only risk factor – exposure to radon, asbestos, air pollution, and second-hand smoke are risk factors, too. Having a previous cancer diagnosis or previous radiation to the chest are also risk factors. No one deserves cancer of any type.” — Paige Black
