It was just a tiny bump behind Corey Wood’s right eye, but her doctor was concerned. The college senior and marathon runner felt fine, but a full-body scan revealed that she had Stage 4 lung cancer.
The diagnosis was stunning, both because of Wood’s age and the fact that she has never smoked. Every year, though, a couple thousand Americans under 40 receive the same mind-bending news, despite having none of the usual risk factors for the disease.
“When I got the diagnosis . . . I didn’t understand,” recalled Wood, who is now 23. Her adenocarcinoma, the most common form of non-small cell lung cancer, had already spread to her lymph nodes and bones. Her chance of surviving five years was less than 5 percent. “I didn’t even cry in [the doctor’s] office, because I couldn’t follow what she was saying.”
Little attention has been paid historically to the small population of younger adults with lung cancer. Yet as science begins to link many lung cancers to genetic mutations, a group of researchers is trying to identify more abnormalities among younger patients. They are finding disease types that are treatable with existing medications, giving people hope they did not have before.
“The young are a population who need this kind of extra testing, turning over every rock to find that hidden genetic signature, which may be something you’ve heard of or something that you haven’t,” said Geoff Oxnard, an assistant professor of medicine at the Dana-Farber Cancer Institute and Harvard Medical School.
Oxnard co-leads the Genomics of Young Lung Cancer Study, which was organized and funded by a former oil company executive who survived lung cancer in her 50s. Bonnie Addario, who also has lost four family members to the disease, embraced some unorthodox approaches to the study, recruiting subjects via social media and establishing a central clearinghouse for information from participating institutions. Typically, researchers don’t share data.
Seventy-four people have been tested to date, and 80 percent have some form of genetic alteration, said Barbara Gitlitz, an associate professor of medicine at the University of Southern California’s Keck School of Medicine and the study’s other co-leader. Three targetable mutations are proving common, she said, and the next step would be a large epidemiological study to determine why young people are getting these types of lung cancers.
“Our goal and our belief system is that at some point we’re going to be able to manage lung cancer chronically by looking at the genomic subsets . . . and treat the disease by the genomic subsets,” Addario said. Should the study find a bigger population of young patients, researchers hope that pharmaceutical companies will do more to develop drugs specifically for them.
In the United States, lung cancer kills more people each year than any other cancer.The American Cancer Society estimates that it will claim more than 158,000 lives this year. The vast majority will be smokers 65 and older.
In younger people, finding genetic mutations treatable with existing cancer medications should not be confused with a cure, even for those who fare well. Many are not diagnosed until their disease has progressed quite far, because healthy non-smokers in their 20s don’t often see doctors. When they complain of symptoms, such as a persistent cough, physicians don’t tend to think of cancer and may treat them for bronchitis or pneumonia for an extended period.
And for some reason, Oxnard said, younger people with these forms of lung cancer fare worse than older patients. Finding an appropriate targeted treatment buys time — sometimes years — until a better medication can be developed or researchers are able to try new combinations of existing therapies.
This is a cancer “that you live with until the next discovery and the next discovery,” Oxnard said.
Maki Inada, a 43-year-old assistant biology professor at Ithaca College in New York, has defied expectations by surviving the lung cancer that was discovered seven years ago. She has one of the most common mutations, in the gene known as EGFR, and the drug erlotinib (Tarceva) kept her cancer-free until 2010.
“I thought I was done with cancer,” said Inada, who gave birth to a daughter in 2011. “It never really crossed my mind that I was still a cancer patient.”
But she became resistant to the treatment and suffered recurrences that led to surgeries to excise pieces of her left lung. Eventually, the entire lung was removed. Today, she is more cautious about assuming she has beaten the disease.
Wood, who lives in Denver, proved to be negative for any EGFR gene alteration as well as another common mutation, in the gene ALK. That meant she would not respond to erlotinib, which was specifically designed to control the cancers that result from those genetic defects.
But her physician believed that because she was so young, there must be a similar explanation in her case. More tumor cells were sent to Foundation Medicine, a Cambridge, Mass., company that looks at mutations in more than 300 genes implicated in cancers. The results came back positive for a mutation in the gene ROS1, which responds well to a newer drug called crizotinib (Xalkori).
Within four months of starting treatment in the summer of 2014, Wood said, her chest scans were clear. The tumor behind her eye was treated with radiation before it could affect her vision. In February, she received official notice that there was “no evidence of disease” in her body.
Throughout it all she continued running, with workouts as long as 20 miles, traveling and looking for a job. Her side effects have been mild. She was taking crizotinib until recently, when doctors found tiny lesions in her brain. Since that drug does not cross the blood-brain barrier, she switched to an experimental medication, entrectinib, that does.
“I definitely have my days when I [say] ‘this is just utter bull----,’ ” she said. “When do I get to see a finish line? This is not fair.”
But she also has considered adopting children if she lives long enough. “That’s the way I think,” she said. “I really want to live my life how I would if I didn’t have cancer.”