By Charlie Schmidt
Young survivors can choose from an ever-expanding menu of targeted support services
By Charlie Schmidt
Heidi Adams was 26 when she was diagnosed with Ewing’s sarcoma, a rare type of bone cancer. The year was 1993, and support services for adolescents and young adults with cancer were few and far between. “There was so little out there,” Adams recalls. “I felt so lonely and isolated.” Memories of being set apart as a young cancer patient stuck with her for years, so in 2000 Adams created the first online support network for adolescent and young adult cancer survivors. Called Planet Cancer, the group has more than 5,000 registered members who share friendship, experiences and advice.
Now more than ever, adolescent and young adult cancer patients are seen as a distinct population—different from children and older adult patients—who have their own unique needs. The age range varies, but in general, most practitioners consider patients between 15 and 29 to be part of this group.
And increasingly, health specialists are recognizing that these young patients and survivors need to interact with one another, says Brad Zebrack, a young adult Hodgkin’s lymphoma survivor and a professor of social work at the University of Southern California School of Social Work in Los Angeles. “We know the sense of cohesion that young cancer survivors achieve around issues like sex, dating and jobs have an added value beyond what they get from parents and other peers,” says Zebrack, who published a study on the health care needs of young survivors in the Dec. 15, 2006, issue of Cancer. “Sometimes other friends who haven’t had cancer just don’t seem to get it.”
“Young adulthood is a time of becoming—a time of deciding who you’re going to be,” Adams explains. “Cancer throws a wrench in the works.”
A growing number of online support networks like Planet Cancer have been making it easier for adolescent and young adult survivors to connect. Virtual communities offer message boards on which users can talk about anything from dating and music to coping strategies and health insurance. The communities also give young survivors a unified voice.
Indeed, such websites empower the youth community and create awareness of the unique needs of young survivors, says pediatric and medical oncologist Karen Albritton, who directs the Adolescent and Young Adult Oncology Program at the Dana-Farber Cancer Institute in Boston.