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Childhood Cancer Survivors Rate Their Health

Nearly 90% of adult survivors of childhood cancer believe that, overall, they are in very good health, according to a recently published study ? yet almost half of the group also reported having had at least one significant health problem develop since cancer treatment ended.

Study authors urged the primary care doctor caring for an adult survivor of childhood cancer to watch for and promptly treat certain health issues common to these patients.

"These findings help characterize the high-risk childhood cancer survivor who is more likely to require intervention to optimize long-term health outcomes, " wrote Melissa Hudson, MD, et al. in the Journal of the American Medical Association (Vol. 290, No.12: 1583-1643).

About 270,000 childhood cancer survivors live in the US today, according the National Cancer Institute.

"The majority of survivors are resilient. They move on with life and adapt to chronic health problems if they occur," said lead author Melissa Hudson, MD, of St. Jude's Children's Research Hospital, in Memphis, Tenn. However, some survivors are more likely than others to develop significant physical or mental health problems, she found, depending on personal characteristics and the type of cancer they experienced.

Health problems were more common among women survivors, among those with less than a high school education, and among those with a household income lower than $20,000. On the flip side, leukemia survivors were less likely to report a subsequent health problem than were survivors of other forms of cancer, such as bone cancer, central nervous system tumors, sarcomas, and Hodgkin disease.

For this study, 9,535 survivors, ages 18-48, completed a detailed questionnaire as part of the ongoing Childhood Cancer Survivor Study (CCCS). For comparison purposes, 2,916 siblings did the same, except that they didn't have to answer cancer-related questions. Hudson and colleagues specifically looked for answers that dealt with six aspects of health: general health, mental health, functional status, activity limitations, cancer-related pain, and cancer-related anxiety/fears.

They found survivors more likely to report poor general health than siblings - 10.9% compared with 4.9% - and more likely to report mental health issues - 17.2% vs. 10.2%. Some degree of functional impairment - an inability to care for oneself and/or go to work or school - was reported by 12% of survivors and 2.5% of siblings.

Lingering cancer-related anxiety was significantly higher for survivors of Hodgkin disease, sarcomas, and bone cancer. One reason, Hudson suggests, is that these conditions are more common in teenagers than in children. The survivors, then, were old enough during treatment to fully understand they had a serious, life-threatening disease, knowledge that led to anxiety in some.

Hodgkin disease survivors were more likely to report poor general health than any group except survivors of central nervous system cancers, such as brain tumors, who may have severe mental impairment. Yet the Hodgkin survivors had the least trouble functioning at work, school, or home.

Schwartz noted that many Hodgkin disease survivors report fatigue, which could explain their perception of poor health. Hudson et al. suggest that lingering anxiety could play a role as well.

"Maybe it's misinformation that causes the anxiety, or survivors may not have gotten a full explanation of what to expect for the future," said Hudson. "They don't know whether to be afraid or reassured."

"One thing that helps is when a physician takes the time to fully explain the health risks a survivor may face," said Hudson.

To take control of their health and future, Hudson says survivors should request detailed reports on the therapy they received as children, including specific medicines. They should give copies to their current doctor, or better yet, a cancer survivor's follow-up clinic. The reports become doubly important as the CCSS and other studies produce new information about which treatments might be linked to delayed or hidden health problems.

Such information can save lives, according to Schwartz, who directs a program at Johns Hopkins Medical Center that sends health updates to patients who've grown up and changed doctors.

"We had one woman who, within a week of receiving our newsletter, was getting a heart bypass," Schwartz recalled. The woman had complained of chest pains to her doctor in Washington State, but was told she was too young to have heart problems -- until her doctor read the survivor newsletter?. "We're not done taking care of them when the treatment is over," she said.

So why do most childhood cancer survivors report being in good overall health ? even if they have experienced significant health problems?

It "may reflect an enhanced appreciation of life after therapy, despite adverse effects on actual health status," Schwartz wrote in the editorial.

"It may be related to a belief in a higher power, some greater insight or emotional maturity caused by the cancer experience," suggested Hudson.

"The article tells us that overall life is good, survival is worth it, and they have many, many years of good life ahead of them,| said Schwartz. "We can say there are 9,000 young adult survivors in this study and most have normal lives: They marry, have children, and hold down jobs. That's what you can expect."