Young adult survivors of childhood cancers are four times more likely to develop post-traumatic stress disorder (PTSD) than their siblings who have not had cancer, according to a Childhood Cancer Survivors Study by UCLA researchers and colleagues.
The study focused on 6,542 childhood cancer survivors over age 18 who were diagnosed with cancer between 1970 and 1986 and 368 of their siblings as a control group. The study found that 589 survivors, or 9 percent, reported significant functional impairment and clinical distress, as well as symptoms consistent with a full diagnosis of PTSD. In comparison, eight siblings, or 2 percent, reported impairment, distress and PTSD symptoms.
The study appears in the May issue of the journal Pediatrics.
"Childhood cancer survivors, like others with PTSD, have been exposed to an event that made them feel very frightened or helpless or horrified," said the study's first author, Dr. Margaret Stuber, a professor of psychiatry and biobehavioral sciences and a researcher at UCLA's Jonsson Comprehensive Cancer Center. "This study demonstrates that some of these survivors are suffering many years after successful treatment. Development of PTSD can be quite disabling for cancer survivors. This is treatable and not something they have to just live with."
Affected survivors reported symptoms such as increased arousal, phobias, startling easily, being hyper-vigilant, avoidance of reminders of their cancer diagnosis and treatment, being on edge, and suffering extreme anxiety. They also reported that the symptoms kept them from functioning normally.
Other studies have looked for PTSD in childhood cancer survivors who are still children or adolescents, but in those cases, the proportion reporting symptoms is far less, about 3 percent, Stuber said.
There could be several reasons for the discrepancy. Today's treatment regimens employ less toxic treatments and rely far less on whole-head radiation for brain tumors, causing far less trauma to the young patients. Additionally, the improved supportive care available today may result in fewer physical and cognitive late effects from treatment.
The survivors in Stuber's study often underwent far harsher treatment regimens commonly used in the 1970s and early 1980s, and within the group studied, those who underwent the more toxic and damaging therapies reported more cases of PTSD.
Another possible reason that more of the young adults reported PTSD symptoms is because they are facing the stressful situations typical for people at that age — finding a job, getting married, starting a family. That stress may exacerbate PTSD, Stuber said.
"It may be that symptoms, clinical distress and functional impairment only emerge among the more vulnerable childhood cancer survivors as they contend with the developmental tasks of young adulthood and the added challenges of the late effects of treatment," the study states. "The relative protection of the parental home is diminished as young adult survivors face the challenges of completing their education, finding a job, getting health insurance, establishing long-lasting intimate relationships and starting a family."
And because many of the patients in the study underwent harsh therapies, they often suffer from significant late effects, including infertility, cognitive impairment and stunted growth. This adds to stress levels as well. Those who suffer from cognitive impairment may find it impossible to go to college or to land a good job that earns them an adequate income.
"These survivors may find that they can't get health insurance. They may be reluctant to put themselves on the marriage market because they're sterile. Those that can have children may be afraid of passing their 'bad genes' onto their children. Some treatments affect growth, so some survivors may be shorter and heavier than their peers," Stuber said. "They may feel like they're damaged goods."
Treatment options such as therapy and medication are available to help the survivors manage their symptoms. But addressing the issue will not be simple, Stuber said.
"People who had more intense treatment are more likely to have these symptoms because their treatment was more traumatic," Stuber said. "And because more damage was done to their bodies, it makes it more difficult to have a good life later. It's all interdigitating."
The study, funded by the National Cancer Institute, looked at children with all types of cancers, Stuber said. Participants filled out a comprehensive demographic and health survey.
UCLA's Jonsson Comprehensive Cancer Center has more than 240 researchers and clinicians engaged in disease research, prevention, detection, control, treatment and education. One of the nation's largest comprehensive cancer centers, the Jonsson Center is dedicated to promoting research and translating basic science into leading-edge clinical studies. In July 2009, the Jonsson Cancer Center was named among the top 12 cancer centers nationwide by U.S. News & World Report, a ranking it has held for 10 consecutive years.