What They Don't Know Can Hurt Them
April 9, 2002 -- Childhood cancer is now largely curable, with more than 70% of pediatric patients surviving to adulthood. But new research suggests that adult survivors of childhood cancer often know so little about their treatment histories that their future health is jeopardized.
A survey of 635 survivors treated between 1970 and 1986 found that three out of four remembered general information about their diagnosis and treatment, but none could provide a detailed summary of their cancer history. The findings are reported in the April 10 issue of TheJournal of the American Medical Association.
Pediatric cancer survivors may be at increased risk for developing secondary cancers related to treatment, as well as a host of other maladies, including infertility and life-threatening heart problems. Risk is usually determined by treatment history, but patients treated at young ages often do not know the specific drugs or therapies they were given. Even those who think they do know their history often have faulty memories, says Nina S. Kadan-Lottick, MD, who was the lead author of the study.
"We found that there were important knowledge deficits regarding diagnosis and treatment among adult survivors of childhood cancers," Kadan-Lottick tells WebMD. "And patients who relied on memory often either overreported or underreported treatment. This is why it is so important that these patients have their medical records."
Katten-Lottick and colleagues surveyed about 5% of the roughly 12,000 survivors participating in the Childhood Cancer Survivor Study. The researchers noted that the most troubling knowledge deficits involved awareness of the site of radiation exposure and whether they received chemotherapy using a type of drug called anthracyclines, such as Adriamycin. More than half of those who had received such treatments could not accurately recall them.
Anthracycline exposure can cause heart damage, and the risk of secondary cancers is increased at the site of radiation exposure. Recent studies have shown a large increase in breast cancers, for example, among women who received chest radiation for Hodgkin's disease as young girls.
Although treatment-related side effects are common, there are no good figures on how many survivors have lasting problems, says author Nancy Keene. She estimates than more than half of survivors experience treatment-related health issues but says only a handful of pediatric cancer clinics evaluate patients for late effects. Keene co-authored the book Childhood Cancer Survivors: A Practical Guide to Your Future, and she is the mother of a 14-year-old daughter who survived leukemia.