Cancer's Orphan Generation
Medical experts are zeroing in on how to increase the survival rates of teens and young adults
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.
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