For Emily Bennett Taylor, it started with a nagging cough. Her doctor first diagnosed her with bronchitis. And later, asthma.
But after months of treatment, her cough persisted and she began to feel pain in her lungs. An x-ray finally revealed that Taylor, at 28 years old, had a large and rapidly-growing tumor in her right lung.
She had adenocarcinoma, a form of non-small cell lung cancer, the most common type of lung cancer found in young, non-smoking women. By the time it was diagnosed, it had advanced to Stage IV, meaning the disease had spread beyond her lung.
“I was very confused. I almost could not believe that someone my age, who was healthy and went hiking and played volleyball, could get lung cancer,” Taylor says.
Ingrid Nunez was also diagnosed with Stage IV adenocarcinoma. She was 19 years old. “At first we thought it was Hodgkin’s Lymphoma [a form of blood cancer] because at least that’s a little more common in people my age,” she said.
The average age of someone diagnosed with lung cancer is about 70. Only 2 to 3 percent of the 228,190 people diagnosed with lung cancer in 2013 are younger than 40.
Nunez says the only sign that something was wrong was a small bump on her left collarbone. “It had never bothered me and I felt fine,” she says. “I thought it was nothing.”
No one was prepared for the biopsy result, which showed that the bump was actually a symptom of lung cancer that had spread to her abdomen, liver, lung, and pelvis.
“I was like, ‘Wait what, but I’ve never smoked,’” said Nunez. “It’s just so random.”
Though lung cancer diagnoses in the young are rare and data on that age group is limited, “it seems to be emerging as its own sub-type of lung cancer—one for which new powerful treatments are needed to make it a livable disease,” said Dr. Geoff Oxnard, a lung cancer specialist at Dana-Farber Cancer Institute in Boston.
In 2013, 159,480 men and women in the U.S. will die from the disease–more than those who die from breast, colon, and prostate cancer combined.
Though smoking is, by far, the greatest risk factor in developing lung cancer, an estimated 10 to 15 percent of lung cancer patients in the U.S. have never smoked. Most of these patients are women and, like Taylor and Nunez, are diagnosed at a younger age than the typical lung cancer patient.
“Young lung cancer patients we see are also more likely to be Stage IV at diagnosis. By the time their disease is discovered they are already pretty sick,” Oxnard said.
Seventy-five percent of patients with lung cancer have advanced disease and a five-year survival rate of only 5 percent.
“In older patients, the disease is often diagnosed incidentally through a scan or x-ray performed for some other reason,” Oxnard explains. “But in the young, who are otherwise healthy and not as integrated into the medical system, symptoms, if there are any, are often ignored or mistaken for something else.”
Traditionally, lung cancer has been classified into two major types: small cell and non-small cell. Today, however, lung cancer is understood to be comprised of several distinct sub-types, each characterized by mutated genes and abnormal proteins that can increasingly be kept in check by targeted therapies.
A targeted therapy is a treatment specifically designed for a specific mutation or other abnormality. In addition to being more effective than traditional chemotherapy drugs and radiation therapy at slowing a cancer’s growth and spread, targeted therapies often have fewer side effects and minimize damage to normal, healthy cells.
For example, young people and non-smokers with lung cancer commonly have mutations in a gene called EGFR. Patients who test positive for that mutation respond better to the targeted therapy Tarceva than standard chemotherapy. Young people and non-smokers with lung cancer also frequently have mutations in the ALK and ROS1 genes, which respond well to a new targeted drug called Xalkori.
Oxnard says than half of all young lung cancer patients have a mutation in their tumors for which a drug exists to block the mutation's actions. This was not the case for either Taylor or Nunez, both of whom were successfully treated—for now—with a standard course of chemotherapy to stay the disease.