Cancer's lost generation draws focus

Oregon Health & Science University plans to start a clinic to improve care for young adults with cancer, a group largely overlooked in the nation's war on cancer.
Doctors hope the program will offer cancer patients ages 15 to 40 better medical care, more social support and access to new research trials.

The idea puts OHSU among a handful of medical centers planning programs for young adults with cancer. At the same time, the National Institutes of Health has begun reviewing science on these patients to set priorities for more research.

Two big factors drive this trend: advocacy from cycling champ and 33-year-old cancer survivor Lance Armstrong and renewed scientific focus on long-term quality of life for patients who do beat cancer.

Decades of work and billions of dollars in research have significantly boosted cancer patients' overall odds of surviving. But the work focused on older adults, who get the most cancers, and on children's unique cancers.
In contrast, the odds of someone 25 to 35 living five years beyond a cancer diagnosis have not changed since 1975.

"This kind of lost generation, between older people with cancer and pediatric patients with cancer, they have made few gains," said Dr. Craig Nichols, OHSU Cancer Institute's associate director for clinical research, who treated Armstrong.

Young adults do have a relatively high rate of surviving cancer, said Dr. Brandon Hayes-Lattin, an OHSU Cancer Institute oncologist driving the clinic. But cancer remains the deadliest disease for U.S. residents 15 to 40, killing roughly 70,000 a year. That compares with less than 10,000 cancer deaths annually in children younger than 15.

Those numbers only partly explain the need for a young adult clinic, Hayes-Lattin said. Even when young people get proper medical care and survive cancer, today's health system is not set up to address the social needs of younger patients, who often worry about getting or keeping jobs, attracting mates or having children.
"Just being in a waiting room, and being able to chat about jobs or day care with someone next to you" is valuable, he said. "Versus sitting in a waiting room thinking, 'There's no one here like me.' "

Fewer answers

Cancer raised a host of social and medical questions for Bethany Hartung, 20. Last year, doctors diagnosed the Clackamas resident with acute lymphocytic leukemia, a blood cancer more common in children younger than 5.

"I was thinking, 'I'm 19 years old. I don't have cancer,' " she said. " 'I don't know what this means. Do I still go to college? Do I go to the hospital? Do I need chemotherapy?' "

Doctors couldn't answer her. Young children with the disease usually get chemo drugs while older adults get bone marrow transplants. Doctors told Hartung, "We don't know which works best," she said, "because we don't see this kind of cancer in people your age."

The cancer made Hartung move back home, giving up the independence she enjoyed as a freshman at a Minnesota college. That was an uncertain feeling, even though she has "a great, supportive family." And Hartung had to think about children, since chemo carries a risk of fertility problems.

She ended up at OHSU's adult hospital, working with Hayes-Lattin. Hartung started chemotherapy last fall, which soon erased signs of the cancer. She is now having outpatient "maintenance chemotherapy" for two years.

Hartung said she was fortunate to meet a few other young adult patients at OHSU who "coached" her through treatment and discussed life issues. "I think it's so valuable" to have that support, said Hartung, who is returning to college.

Increasing survival rates

The OHSU clinic hopes to offer more patients that experience, said Hayes-Lattin -- himself a survivor of testicular cancer, diagnosed when he was 28. But the clinic also wants to speed the slow pace of improvement in young adults' survival odds. No one knows the exact reason for that, Nichols said, but social and practical factors are probably important.

Young adults often have less steady employment and health insurance, and no steady relationship with a doctor. That can delay a cancer diagnosis, making the disease harder to treat, Nichols said.

Young adults also have relatively little access to the research trials that test and prove new cancer treatments, said Dr. Karen Albritton, who directs the Adolescent and Young Adult Oncology program that Boston's Dana-Farber Cancer Institute started this year.
A Children's Oncology Group that coordinates cancer research in pediatric hospitals has enrolled many young patients, greatly boosting their survival -- but seldom including young adults. And adult trials usually exclude teens.

The reasons are more practical than scientific: Different hospitals generally host those studies, so researchers would face twice the paperwork to include both patient sets. And no big outside advocacy group focuses on young adults to help fix these problems.
"We don't really know what we're doing with these patients," Albritton said. "It's really under-researched. And I both mean physically, how do you treat a 25-year-old with ALL (acute lymphocytic leukemia)? But also, how do you meet their psychosocial needs?"
Investigating causes

Biology might help explain why young adults haven't seen big increases in cancer survival. Although a few cancers focus on that age group, including testicular cancer, many young adults get cancers more common in children or older adults. Those cancers might be different -- perhaps more aggressive -- when they form at unexpected ages.

Doctors already know that breast cancers in younger women tend to differ from more common breast cancers in older women, especially in how tumors react with hormones, Hayes-Lattin said.

Young adult patients themselves may also be biologically different, Albritton said. Doctors generally think that children's cancers are driven mostly by biology, while cancer in older adults may be more environmental.
Young adults who get tumors may have some genetic propensity to be affected by environmental problems sooner. If such a biological difference exists, finding it could lead to new ways of understanding, preventing or diagnosing cancers.

Planners are still working out a host of practical issues for the OHSU program, including finances. The Lance Armstrong Foundation is considering OHSU's proposal to give the clinic money from next month's "Livestrong" charity bike ride in Portland.

Regardless of that decision, the university has committed to the idea and "it's a question of when not if" the clinic opens, said Hayes-Lattin.

Andy Dworkin: 503-221-8239; andydworkin@news.oregonian.com