Childhood Cancer Survivorship
Post-Traumatic Stress is a Common Response
by Anne E. Kazak, PhD, ABPP
Having survived cancer as a child, or being a parent of a child who completed cancer treatment, is a welcome “destination” after a “journey” from diagnosis through treatment, with many experiences that affect not only the person with cancer but also the entire family. While the completion of cancer therapy is cause for celebration, ongoing psychological reactions to these experiences are common across members of the family over time. Our research in the Division of Oncology at the Children’s Hospital of Philadelphia is devoted to providing assessments and treatments that can help children with cancer and families with psychological symptoms over the course of treatment and beyond.
Although most people with cancer and family members cope quite well, children, adolescents, and families tell us that they continue to experience cancer and its treatment as very real, sometimes in ways that are upsetting. Families indicate that they often do not know how to talk about cancer with each other, particularly after treatment ends. Family members discuss both the negative ways in which their cancer experience has changed them and the positive growth they have seen in themselves and their families.
The diagnosis and treatment of cancer can be traumatic. The diagnosis is often surprising, almost always life threatening, and requires that individuals and families reorganize themselves to deal with procedures and treatments that may be unfamiliar and uncomfortable. We found that most parents, and some children and adolescents, experience post-traumatic stress symptoms. Around the time of the child’s diagnosis, parental feelings of helplessness, horror, and intense fear are very common and often are called acute stress reactions.
For many parents and some survivors, memories of the cancer treatment continue after treatment ends.
For many parents and some survivors, bothersome or upsetting memories of the cancer treatment continue through treatment and even after treatment ends. For parents, the most upsetting memories included finding out their child had cancer, seeing their child in pain, waiting for test results, making treatment decisions, going to the emergency room, being afraid their child could get sick again, and being afraid that their child might die. For children, the most upsetting memories reflected the immediate consequences of cancer. They recalled being in pain, losing hair, getting shots, and taking pills.
From our work, we have learned that follow-up appointments, seeing children without hair, or seeing something about cancer on TV often can bring back these upsetting memories in both parents and children. Many people wish to (or actually do) stay away from these painful reminders. For some, these reminders may cause physical reactions, such as feeling sick at the sight of these reminders. Other physical responses include a fast heart rate, sweaty hands, or difficulty catching one’s breath.
We have found that people who are anxious even before having cancer are likely to have increased anxiety during treatment and may be more likely to continue to experience distressing memories after treatment ends. During treatment, therefore, we recommend strategies to help reduce anxiety. These may take a variety of forms, including seeking out support from others at home and in the hospital, practicing relaxation exercises, and establishing strong alliances with your child’s healthcare team. We also recommend that healthcare providers talk with their patients about the likelihood of ongoing experiences of cancer after treatment ends and to include this in discussions of medical late effects of treatment. Even in the midst of anticipating the end of treatment, some information about what to expect later is helpful to understand possible later psychological reactions.
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Dr. Anne Kazak is a professor in the Department of Pediatrics at the University of Pennsylvania School of Medicine and director of the Department of Psychology at The Children’s Hospital of Philadelphia.
This article was published in Coping® with Cancer magazine, September/October 2007.