Young, sick and invisible

By the time he was 39, Craig Lustig had already gone through two bouts with brain cancer.

He describes what it was like to be a young patient facing a life-threatening illness:

Especially as a young adult, when we’re coming into our own as individuals, it is a very difficult experience to lose control of your body and to allow people to do some pretty awful things to it, as well as losing control over other parts of your life because you have to devote most of your time to getting well.

Craig’s story is one of dozens of personal reflections shared by the Lance Armstrong Foundation on its Web site. It especially illuminates a group of patients who all too often get overlooked: young adults with cancer.

It’s their turn to speak up this week during the seventh annual National Young Adult Cancer Awareness Week. Among their messages: Many of the advances in cancer treatment and outcomes have bypassed this age group, and more must be done to address their unique needs.

Cancer is generally considered a disease of older adults. Of the 1.6 million Americans diagnosed each year with cancer, fewer than 10 percent fall between the ages of 20 and 40, according to SEER, the database of the National Cancer Institute.

These younger patients are stranded by their minority status. In the oncology world, they’re caught between services for children and services for older adults. Nor do they fit easily among their peers, as Craig explains:

I worked through relationships with friends and family who didn’t have cancer – especially friends in  my own peer group who found it hard to watch me, a young adult like them, with a life-threatening disease. Our generation of young adults with a cancer history doesn’t necessarily fit the traditional treatment molds of either being among people who are often twice or three times our age, or in the environment of the real young ones.

Cancer in one’s 20s or 30s can severely disrupt a developmental stage in life that’s normally devoted to college, relationships, establishing independence, launching a career and starting a family. Survivors carry lifelong health risks as a result of their cancer history and treatment. They can face discrimination at work and in the health insurance market.

Perhaps most disturbing is how this age group has fallen behind while cancer survival rates have improved for almost everyone else. CA, the journal of the American Cancer Society, explored this issue in depth two years ago, concluding that this gap "is unacceptable."

Cancer kills more 20- to 30-year-olds than any other disease except depression-induced suicide, and in young women, cancer outranks all other disease killers by a wide margin. Yet cancer in young adults has been under-recognized and frequently not considered by internists, family physicians, pediatricians, gynecologists, other health professionals, and even, at times, oncologists.

Among some of the barriers: Many young adults have little contact with the health care system and hence are less likely to receive an early diagnosis of cancer. They might be uninsured, or they might shrug off symptoms because they perceive themselves as invincible. The relative rarity of cancer in this age group can also lead doctors to underestimate the likelihood that a young patient might have cancer, and fail to make a timely diagnosis.

There’s a push to do more. Among the resources that have sprung up are Vital Options, the first organization to specifically address the needs of young adults with cancer; the Ulman Cancer Fund for Young Adults; the edgy Planet Cancer; and the Lance Armstrong Foundation’s Young Adult Alliance.

Another promising development is the inclusion of research funding in the federal stimulus project to study the biology of young adult cancer.

So the news is beginning to look more encouraging for young adults. But there’s still a long way to go toward closing a gap that shouldn’t be there in the first place.

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