The good news is that there are now nearly 300,000 survivors of childhood cancer with a dramatic increase in overall survival to 80% compared with only 25% less than 50 years ago. By 2010, 1 in every 250 adults will be a childhood cancer survivor. Increased survival has been attributed to the development of effective combinations of chemotherapy through controlled research, aggressive treatment, better management of side effects and infection, and the development of specialized treatment centers in pediatric oncology.
Improved Survival at a Cost
Increased survival, however, has also come with a cost in terms of a significant number of children who will suffer long term or “late” effects as a result of treatment with specific organ damage, psychological, academic, or vocational challenges. All childhood cancer survivors will need lifelong medical follow-up and surveillance for secondary cancers which can arise in adulthood.
Late effects can include heart, lung or kidney problems, hearing deficits, dental abnormalities, infertility, sexual dysfunction, early menopause, osteoporosis, obesity, chronic fatigue, learning disabilities, avascular necrosis, and other chronic health conditions. Girls who received radiation to the chest for Hodgkin’s disease are at increased risk for developing breast cancer as adults.
Growing children are particularly vulnerable to certain delayed effects such as impaired growth and pubertal development. The severity depends on the age at which treatment occurred, the type, dose, location, and duration of treatment. In general, the younger the child at diagnosis the more at risk for treatment related long tem effects. Children who received bone marrow transplants are at even greater risk.
Children most at risk for neurocognitive dysfunction and learning disabilities are those treated for brain tumors or those who receive radiation to the face, as well as leukemia patients who receive chemotherapy directly into the central nervous system. Problems can include decreased memory and concentration, slower processing speed, difficulty with math, reading or spelling, which may not be apparent until years after completion of treatment.
Some effects can be minimized by young adult childhood cancer survivors by engaging in a healthy lifestyle which does not cause further organ damage such as not smoking, avoiding excessive alcohol and sun exposure, eating a healthy diet and getting an appropriate amount of exercise.
Psychosocial Effects of Surviving Childhood Cancer
Psychosocial effects of surviving childhood cancer are complex. While most long term survivors report good to excellent health and quality of life with no significant difference in post traumatic stress compared with peers, many complain of continued depression, decreased social engagement, increased worry, fear, and sexual dysfunction. Almost all parents continue to report some distress as well as over 80% of siblings according to long term survivor studies.
Young teen or adolescent survivors may also feel “out of sync” with peers who have not faced life and death issues at early developmental ages. Others may miss out on important social skills in areas of dating or relationships. Some adolescent survivors may engage in increased risk taking behaviors because of an enhanced sense of invincibility which can endanger health.
Some adolescents or young adults may deal with the threat of recurrence or potential late effects with denial and avoidance and thus fail to get proper medical attention. Many want to put the cancer experience behind them and forget about the past. Others report very positive feelings regarding their experience having survived, with increased empathy and caring toward others, and positive impact on career choices and not taking life for granted.
Challenges and Barriers for Survivors
The challenge is one of educating adolescents and young adults about their own cancer histories, physical risk factors as they age, need for lifelong follow-up care and surveillance, as well as promoting healthy living. For survivors who are transitioned to adult practitioners, another major challenge is as educating adult health care specialists about childhood cancer treatment issues. Other barriers include getting insurers to pay for needed tests and finding ways to continue getting necessary medical follow-up for young adults who age off their parent’s insurance plans or who have no access to insurance because of lack of or marginal employment and uninsurability.
Life with Cancer Response to Childhood Cancer Survivor Challenges
Beginning in July 2006, Life with Cancer has worked to address the challenge of providing information on the physical and psychosocial late effects, insurance, college and vocational issues, by offering a series of conferences and programs in partnership with The National Children’s Cancer Society’s Beyond the Cure Program. College scholarships were awarded at the July, 2006 Conference by The American Cancer Society and the John Quadrino Foundation as an incentive to attend.
On July 20, 2008, Life with Cancer, held an educational and “fun” program for survivors, aged 14 and over, on “Physical Reconditioning, Nutrition and Bone Health After Treatment for Childhood Cancer” at the Sport and Health Club in Ballston. And currently plans are underway to conduct another major, all day conference on late effects for survivors, parents and professionals in 2009. Both events are co-sponsored by the Beyond the Cure Program with The National Children’s Cancer Society in partnership with Children’s National Medical Center and The Leukemia and Lymphoma Society.
For more information contact Connie Connor, LCSW at 703.531.1515 or constance.connor@inova.org.
Like this:
Tags: cancer programs, childhood cancer, late effects, survivorship, young adults with cancer
