At her Seattle high school, Shannon Keating wears a hat to camouflage a head made bare by chemotherapy. In the hospital, surrounded by other teens her age, she’s more comfortable going bald. “I feel fine not wearing a hat because you know everyone went through the same loss,” says the 15-year-old who is being treated for stage 2 Hodgkins lymphoma.
That sense of camaraderie can be critical for young adults battling cancer. It’s the inspiration behind the unit at Seattle Children’s Hospital where Shannon is being treated — the nation’s first inpatient cancer ward devoted to treating teens and young adults, a group whose survival rates have stubbornly bucked the upward trend experienced by younger and older patients.
Doctors aren’t sure why that is. Is there something different about the biology of a cancer in someone in their teens or twenties? Perhaps. In one study of kids up to age 18, children older than 10 cleared a common chemotherapy drug, cyclophosphamide, from their bodies much faster than younger kids; the less a drug lingers, the less likely it is to be as effective.
For Dr. Becky Johnson, medical director of the adolescent and young adult program at Seattle Children’s Hospital, the need for the new unit is both personal and professional. She was 27 and a medical resident when she was diagnosed with breast cancer. That was 17 years ago, but she still recalls how isolated she felt when she discovered that support groups consisted of women in their 60s. “There was no mechanism for finding other young patients, nothing at all,” says Johnson. “The whole time I was treated, I’d look around the waiting room for people who were young.”
The concept of creating a “medical home” for cancer patients perched between childhood and adulthood is attracting interest in other parts of the country. Hospitals in Cleveland and Los Angeles are constructing similar units, acknowledging that the young-adult demographic has long been a somewhat forgotten population in the cancer world. About 24,000 adolescents aged 15 years to 29 years old are diagnosed each year with cancer in the U.S. There has been no data from the U.S. on whether that number has gone up or down over the years, but Australian reports show an increase in diagnosis in young adults.
When it comes to cancer treatment, teens and young adults have fallen through the cracks, says Dr. Brandon Hayes-Lattin, medical director of the adolescent and young adult oncology program at the Knight Cancer Institute, part of the Oregon Health & Science University. “They’re often left out of the loop in pediatric or adult settings,” he says. “One of the challenges has been that the two different worlds of pediatric versus adult cancer treatment have been so separate that it has been hard to address the needs of the people in between.”
Hospitals for children treat mostly young kids; hospitals for adults tend to treat those who develop the disease in middle-age. Teens and young adults don’t really fit in at either place, but there’s increasing awareness that clustering young adults together allows doctors to better meet their needs; for example, physicians can do rounds later in the day to accommodate teens, who are notoriously not early risers. It’s also good for research: grouping young adult patients together helps researchers home in on this population. And it helps patients meet others like them.
“It can be a very isolating feeling when you’re an adolescent with cancer,” says Dr. Doug Hawkins, who oversees oncology care at the hospital and helped plan the unit, which is aimed at 15- to 29-year-olds. “Your friends are going to college and getting married. Cancer makes you dependent on your parents when you’re supposed to be independent. It can make you feel like you’re the only person in the world who’s 18 and has cancer.”
In the U.S., less than 10% of patients in pediatric cancer sites are older than 15. At adult cancer facilities, less than 10% are younger than 40. It’s such a relatively small group that experts worry their needs are getting overlooked — especially their need to just see other people their age going through treatment. “Our hope is that this unit will be an organic way for patients to just get to know each other,” says Johnson. “That has been shown to be extremely effective at reducing feelings of isolation.”
Those feelings are exacerbated by having to share a room with a wee one. Daniel Mar, who is 19 and being treated for Ewing sarcoma, a cancer of the bone and soft tissue, had several babies as roommates before the wing dedicated to patients his age opened. They’d cry in the middle of the night, waking Mar. “Getting chemo isn’t the best experience as it is, but having a baby cry and lying awake all night long listening doesn’t help,” he says.
Yet multiple studies have indicated that caring for older teens and young adults in children’s hospitals yields better treatment outcomes than caring for them in general hospitals. Studies on acute lymphoblastic leukemia, the most common cancer in people under 20, have found that patients treated with pediatric protocols have improved survival rates. “The difference is huge, as much as 30%,” says Hawkins.
Part of the reason may be due to the psychosocial support provided in children’s units, especially when it comes to drugs. Teens are less likely to adhere to a medication schedule than other patients, so making them feel more comfortable, rather than intimidated, in the wards can improve compliance. “If you can build a supportive network, you might actually improve outcomes,” says Hawkins.
But the focus extends beyond physical, social and psychological concerns, to aesthetics as well. There’s cool mood lighting (patients can pick which shade of the rainbow they’d like to illuminate their room) and layouts designed with the privacy needs of young adults in mind. There’s a couch for a parent to bed down, but it can be separated from the patient with a privacy curtain. And there are two televisions in each room, so patient and parent don’t need to squabble about what to watch. In a nod toward teens’ night-owl tendencies, visiting hours run to midnight — four hours later than in the rest of the hospital. And in what may the ultimate attempt to help patients stay connected with the outside world, they can even use the flat-screen televisions in their rooms to access the ultimate supportive network: Facebook.