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Cancer in Young Adultsby Vickie Williams The music is loud and funky—pop, rock, hip hop—accentuating the ambiance created by the lively decor and bright, dancing lights. Young men and women move casually from one pocket of the room to another checking things out, looking for a point of interest. Two settle at a pool table. A few choose a DVD to watch on a huge-screen television. Others sit, sipping cold drinks as they laugh and joke and tease each other. It is a typical scene, young people chillin’, except this activity center is located inside a hospital rather than a shopping mall or a community center, and the patrons are 15- to 25-year-olds with cancer and their same-age friends and family members. This center, called Kim’s Place, is one of the many services The University of Texas M. D. Anderson Cancer Center provides through its Adolescent and Young Adult (AYA) Program, which was established in 1999 to help these patients cope with the cancer-related challenges unique to their age group. “Cancers that develop in adolescents and young adults have a distribution and biology that is distinctly different from that of cancers in children or in adults, although it’s unclear exactly why,” said Eugenie Kleinerman, M.D., professor and head of the Division of Pediatrics. “There is a vast difference between these groups in, for example, stage at diagnosis, latency period, tumor histology, response to treatments, and long-term disease and treatment-related complications. Understandably, the types of psychological and social issues facing these patients also differ.” Another distinguishing factor is that the adolescent/young adult population of patients with cancer lags behind children and adults with respect to progress in clinical care and treatment outcome. “The dramatic progress that has been achieved in the treatment of children and adults with cancer has not been realized in adolescents and young adults,” said Dr. Kleinerman. “Adolescents and young adults have had a lower reduction in mortality rate and a lower survival increase than younger or older patients. Nationally, the 5-year survival rate among patients 20 to 39 years old has been stuck at about 70% since 1986.” The reasons for the increased incidence of cancer in this population are not fully established, but of the possibilities, Dr. Kleinerman cites underutilization of health care services by this age group, limited knowledge among patients and family members about clinical trial participation, perceptions among physicians that patients will be noncompliant, and the eligibility limitations of cooperative group studies. “Combined, these factors clearly point to the need for special psychosocial support programs focusing on adolescent and young adult cancer patients,” said Dr. Kleinerman. There is also evidence that the incidence of cancer in the adolescent/young adult population is increasing. “The increase in the incidence of cancer among teenagers was first noted about 25 years ago in a Surveillance, Epidemiology, and End Results report,” said Dr. Kleinerman. “In the ’70s, ’80s, and early ’90s, the increase in the United States was about 1% per year. That rate has decreased somewhat to 0.8% per year. But this is still faster than the increase in either children or adults.” Such was the thinking that led to the AYA Program at M. D. Anderson. “The program provides medical, psychological, social, educational, career development, and neuropsychological support through traditional and contemporary interventions,” said Martha A. Askins, Ph.D., assistant professor and psychosocial director of the AYA Program. “The program is staffed by a team that includes oncologists, psychologists and psychiatrists, neuropsychologists, social workers, teachers, and clergy who work together to provide comprehensive supportive care.”
In hospitals where there is no medical service specifically dedicated to 13- to 25-year-olds, adolescents and young adults are routinely assigned to pediatric- or adult-care units. “Treatment recommendations for adolescent and young adult patients can vary widely between pediatric- and adult-care oncologists, and the differences can have a profound effect on outcome,” said Dr. Kleinerman. Through the AYA Program’s multidisciplinary approach, patients are treated by a team that includes health care professionals from both the pediatric and adult services. In addition to the clinical issues, the psychosocial experiences of adolescents and young adults with cancer differ from those of children and adults. “While learning to adjust to treatments and side effects, they must cope with emotional distress, self-esteem issues, and uncertainty about the future,” said Dr. Askins. “And, like all young adults, they also struggle with concerns about dating and marriage, relationships with peers, becoming independent from parents, and assuming responsibility for their own health care.” Through the AYA Program, multiple resources from across the institution and, when necessary, from within the community, are mobilized to provide assistance in all of these areas. “It is especially important for young patients to share experiences and coping skills with peers when they are undergoing cancer therapy, which can be a lonely and stressful time,” said Dr. Askins. “We encourage socialization and provide special accommodations, such as Kim’s Place, to encourage interaction.” Other year-round social activities sponsored through the program include outings to theaters, festivals, professional sports events, multicultural celebrations, and theme parks; a week-long camping trip to Camp AOK (Anderson’s Older Kids); and an annual trip to the slopes where patients who have lost a limb to cancer can learn to ski. A concern for adolescent and young adult cancer patients is having their education interrupted while they undergo treatment. “These young men and women worry about missing school and falling behind in their coursework, whether they are enrolled in grade school, college, or trade school,” Dr. Askins said. “We counsel students on the many options that can allow them to continue their education without interruption.” Those options include a homebound program, continued participation in their community-based schools, or participation in the M. D. Anderson hospital school, offered in collaboration with the Houston Independent School District. Special programs are offered to help international students continue their education and to acclimate to the hospital milieu. In addition to grade-level coursework, students can participate in creative arts and physical fitness classes. Counselors tutor patients preparing for college entrance exams and help them complete applications. A special feature of the education program is its career planning and vocational guidance segment, through which patients, including those with cognitive or physical impairments, can explore appropriate job opportunities. Paramount among the concerns of adolescents and young adults with cancer are body image and sexuality. At the critical age when physical appearance is so important, these patients are losing their hair, wearing indwelling medi-ports, gaining or losing weight, and undergoing surgeries that are often disfiguring. Likewise, just as their sexual identities are evolving, they find themselves struggling with the possibility of impaired sexual function and infertility. “These are very sensitive issues, and we approach our patients with compassion and respect,” said Dr. Askins. “Counselors meet with adolescents and young adults separately in weekly group sessions held at Kim’s Place. We encourage them to form social-support networks in which they can express personal feelings about the experience of cancer and about cosmetic and functional changes. We advise them about establishing and maintaining relationships and provide information to help them make decisions about fertility, if required.” Dr. Askins said. Dr. Askins explained that it is essential to assess for and address potential problems and relevant issues in each of these patients early on. “At M. D. Anderson, the AYA Program is a sort of advocacy group. Our goal is to help these young people develop the psychological and social foundation they will need to cope with the quality-of-life concerns cancer presents—and to do that in a way that makes them feel confident and comfortable.”For more information on this topic or for questions about M. D. Anderson’s treatments, programs, or services, call askMDAnderson at (877) MDA-6789. Other articles in OncoLog, November 2005 issue:
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