Cancer's Orphan Generation
Medical experts are zeroing in on how to increase the survival rates of teens and young adults
There were so many times when Renee Turchi felt as if she were falling between the cracks. In 2005, after being diagnosed at age 33 with a rare, soft-tissue tumor in her lung, she found herself stuck between the worlds of adult and pediatric oncology. "Everybody else was running around playing with Legos," she says, or her chemotherapy roommates were all in their 60s or 70s or 80s. "I was so aware of being the youngest," says Turchi. "You tend to identify with your peer group. I couldn't find any adults with Ewing's sarcoma."
Turchi is hardly the public face of cancer, which is perceived to strike older adults and little kids, not those in the middle. And it's true that cancer strikes mostly those over age 65. But around 70,000 people between the ages of 15 and 39 in the United States are diagnosed with cancer each year, about eight times the number of youngsters who get the disease. Turchi's feelings of isolation are symbolic of what is happening in today's cancer wards to teens and young adults: While their survival rates used to be the envy of the cancer community-above 70 percent, on average-adolescents and young adults have gained very little from advances in treatment and detection over the past few decades. "Overall survival rates have plateaued, and there's been no improvement, while younger and older patients have improved," says Brandon Hayes-Lattin, director of the Adolescent and Young Adult Oncology Program at Oregon Health and Science University Cancer Institute in Portland. In some cancers, like certain lymphomas, survival rates have actually declined in this age group.
Plan of attack. Cancer experts and healthcare providers are determined to reverse that trend. About 10 hospitals across the country have created special clinics or programs devoted to adolescents and young adults, the so-called AYAs. Two giants in the field, the National Cancer Institute and the nonprofit Lance Armstrong Foundation, teamed up recently to map out a long-term plan of attack. And the LAF is reaching out to other research and advocacy organizations to coordinate efforts. The goal: to improve the survival prospects for what many are now calling the "orphan generation" of cancer.
A 10-year-old diagnosed with cancer in the late 1970s had about a 60 percent chance of surviving for five years. But a 10-year-old diagnosed in the '90s saw his odds upped to 75 percent. For a 65-year-old, the five-year survival rate leapt from about 45 percent to more than 65 percent. Then consider a 30-year-old: While she had a 70 percent chance of living for five years back then, her prognosis had actually slightly worsened by the late 1990s. Those trends continue into this decade, says Archie Bleyer, an oncologist and medical adviser at the cancer treatment center at St. Charles Medical Center in Bend, Ore., and a longtime researcher in the field.
Experts must first determine why survival rates have stalled. Researchers plan to study the characteristics of the particular cancers-such as lymphoma, melanoma, and genital cancers-that tend to be the most common in teens and young adults. They'll also delve into whether a cancer in young adults is different from the same type of cancer in adults and children and how that affects treatment. (Children, for example, can tolerate more chemo than older adults in part because their cells are furiously renewing as they grow.) Experts have already found some differences. Breast cancer, for example, tends to be more aggressive in younger women, says Karin Hahn, an oncologist at M. D. Anderson Cancer Center in Houston and head of its program for young breast cancer survivors. It's also less often fueled by estrogen, which means patients are less likely to benefit from the anti-estrogenic drugs like tamoxifen. The NCI/LAF group, which met in Austin late last year, recommends that scientists first focus on certain sarcomas, non-Hodgkin's lymphoma, colorectal cancer, breast cancer, and cancers of the germ cells that become sperm or eggs. Those were picked because they're common enough to have a big impact, have shown little progress among this age group, and are often life threatening.
Age limits. One reason so little is known about cancer in young adults is that few of them participate in clini-cal trials, which provide both better care for participants and crucial information to help future patients. "Trial participation drops off markedly around age 19," says Doug Ulman, chief mission officer of the LAF and founder of the Ulman Cancer Fund for Young Adults. (Ulman, 29, has survived two bouts with melanoma and a cartilage tumor.) "If we can figure that out, we can start to make some strides," he says.
It could be as simple as time and transportation. While kids have Mom or Dad to organize their lives and drive them to and from treatment, young adults can't always get themselves to the treatment facility. Some trials have been closed to them, too, as most have age cutoffs. Researchers say that those limits should be reconsidered and that there's a need for more trials specific to this age group. And to attract more patients, trials should work around impediments such as school, job schedules, and child care.
Also keeping a lid on survival rates is access to care, says Karen Albritton, who is developing the AYA program at Dana-Farber Cancer Institute in Boston. As AYAs are more apt to have entry-level jobs with no benefits or be between jobs, they're more likely to be uninsured and thus probably don't see a doctor regularly. And because neither they nor their doctors suspect cancer at first, often their disease isn't caught in its earliest, most treatable stages.
Take lung cancer survivor Dan Waeger, who was working on his M.B.A., coaching college golf, and training for a marathon when he was diagnosed in 2005, just before his 23rd birthday. "I didn't know a single person with cancer," he says, and he never imagined that his months of coughing could portend such a diagnosis. Waeger is now undergoing chemotherapy and just months after his diagnosis founded the National Collegiate Cancer Foundation, which provides need-based financial aid for kids with cancer who want to continue with college.
The new programs at hospitals and cancer centers aim to serve as research hubs for trials specifically for teens and young adults. The programs have dedicated staff and special support groups and outside activities like retreats geared to these in-betweeners. Perhaps most important, the distinct life stage of this age group can be addressed. "We have to tell them, 'We may make you infertile, we will make you bald, we will make you gain and lose weight,'" says Megan Burke, medical director of the new AYA program at the Cleveland Clinic. Those worries loom large among young adults, and some have practical solutions, like bringing in fertility experts or weighing the long-term effects of chemotherapy on the heart.
The centers are also magnets for young people, who can act as ad hoc support groups. Heidi Adams, 39, a sarcoma survivor who now runs Planet Cancer (www.planetcancer.org) for young adults affected by cancer, recalls a support group she once attended where she felt surrounded by her grandparents. "I thought, 'You don't understand that I'm not dating, that I can't keep up with my friends, that I feel like my life is on hold, that I'm facing mortality for the first time,'" she says. But among peers, young adults can connect and talk about their concerns, such as sex during treatment, how to deal with overprotective parents, and, for some, facing death.
Thanks to the newfound scrutiny, that last, most frightening scenario should confront fewer young people, says Bleyer, who has spent years trying to call attention to the discrepancy. "The momentum can't be denied, and I can sit back and enjoy that." So will the teens and young adults whose lives stand to be saved.
This story appears in the January 15, 2007 print edition of U.S. News & World Report.