Understanding the late effects of childhood cancer: a "mind-body approach"

April 26, 2001

Philadelphia, Pa.--Today, three out of four children diagnosed with cancer are cured, compared to just one in four in 1975. Yet the conquest of the disease can be a "mixed victory" because the radiation, chemotherapy and surgery used to cure cancer can sometimes have negative effects on the growing body and mind. These effects can emerge years or even decades after the illness and treatment, leaving survivors facing new battles, often in the prime of life.

A good example is Barb Lee, who, at age 16, was successfully treated for Ewing's sarcoma, a virulent bone cancer. Years later, at a time in her life when she had a new daughter, a new home and a new stage in life, Barb found herself coping with the development of a second cancer. This time, the diagnosis was breast cancer, which is not an uncommon side effect for adolescents and young women who received radiation treatment years before. "There I was, eager to go forward with my currents plans, but then having to undergo chemotherapy again, which gave me flashbacks to my earlier treatment," says Barb, now 41. "In my wildest dreams, I never thought I would face a different cancer one day." Fortunately, she is again healthy and cancer-free.

The late effects of cancer go beyond the physical. According to new research findings, most survivors have experienced at least some lingering psychological effects, ranging from sleep problems to intrusive memories that cause intense distress. Driving for check-ups may trigger a racing heart. The smell of rubbing alcohol may prompt nausea. Like soldiers returning from the war, most survivors face a kind of "shell shock" from the illness and treatment of childhood cancer.

Usually, these symptoms do not interfere with general functioning and are "normal," inevitable consequences of successful therapy. While serious long-term complications do occur in a few survivors, most can be anticipated and many can be treated.

The Children's Hospital of Philadelphia has been at the forefront of studying the late effects -- on both body and mind -- of childhood cancer. In fact, the hospital started the first program to track long-term survivors. Today, the topic is gaining national attention as the pool of survivors grows. Currently, more than 250,000 children, teens and adults in the U.S. have survived the disease, and this number is expected to increase as cure rates increase.

In 1996, Children's Hospital became one of 25 sites across the U.S. and Canada to participate in the long-term Childhood Cancer Survivor Study (CCSS) established with funding from the National Cancer Institute. "As we learn more about the long-term effects from the growing numbers of survivors, we are able to design treatment that is less likely to cause some of the most serious complications. There are already many examples of how we have used the knowledge gained from such studies to cure more children who have fewer long-term problems as adults," says Anna T. Meadows, M.D., director of the Hospital's Cancer Survivorship Program, and the first director of the the National Cancer Institute's Office of Cancer Survivorship.

The ongoing CCSS study involves 14,000 childhood cancer survivors and initially focused on the late-effects of treatment therapies on the body. "Survivors have problems with infertility, growth, cardiac and pulmonary function and cognitive changes. These all serve as long-term reminders of their treatment," says Dr. Meadows.

In one the first studies of survivors by Dr. Meadows in the late 1970s, at the outset of modern therapy for childhood cancer, significant reductions were found in overall IQ in leukemia patients who had received radiation to the brain. In 1989, as part of an international consortium of 12 major childhood cancer institutions, Dr. Meadows published the first study showing that children with Hodgkin's disease have a high risk of developing a second form of cancer. A follow-up study published in 1996 confirmed the high rate of breast cancer in this group of survivors, and a further follow-up to this study is now in progress. Many other studies at Children's Hospital are focusing on survivors, including the neuro-cognitive functioning and later fertility of children receiving bone marrow transplants.

The emerging focus on long-term psychological effects

Only recently, research expanded to include the psychosocial effects of surviving childhood cancer @ and the findings were startling. "We're finding that kids who beat cancer are prone, later in life, to post-traumatic stress symptoms (PTS) akin to stress disorders seen in war veterans," says Anne E. Kazak, Ph.D., director of psychology at Children's Hospital, who has been a pioneer in this area. "Survivors may have flashback memories. Triggers such as seeing a bald child may lead to heightened anxiety. A minor ache may trigger intense worry about recurrence of the disease."

Survivors may also feel isolated from friends and family, or have difficulty with employment. These symptoms are all associated with the past trauma from invasive procedures, repeated hospitalizations, separations from family members during hospitalizations, and painful and dangerous complications from treatments, Dr. Kazak says.

PTS is most likely to appear in post adolescence. In a groundbreaking pilot study involving young adults age 18 to 40 (published in December 2000 in the Journal of Clinical Oncology), Children's Hospital researchers found that as many as 75 percent of childhood cancer survivors have some PTS symptoms, while 20 percent have full-blown PTS. The findings of a larger follow-up study involving 200-300 young adults between ages 18 and 35 are expected within the next six months.

"Young adulthood is normally the time when people become aware of their mortality," explains Wendy Hobbie, CRNP, coordinator of the Long-Term Follow-up Clinic at the Children's Hospital and one of the study's investigators. "As they age, survivors may experience new medical late effects and begin to realize their limits, such as fertility or cognitive problems that interfere with their goals and independence as young adults," says Hobbie, who is also a co-author of "Childhood Cancer Survivors: A Practical Guide to Your Future" (April 2000).

Intervention Programs Can Reduce Late Effects

PTS can lead to avoidance of health care, important follow-up visits, screenings such as mammograms, and other procedures that may help detect or prevent late effects. Children's Hospital recently received a three-year grant from the Lance Armstrong Foundation for an intervention program aimed at young adult survivors to reduce avoidance behavior. The program will build upon Children's Hospital's successful SCCIP program (Surviving Cancer Competently Intervention Program), a multidisciplinary intervention program for adolescents and families that provides tools for coping with the physical and psychosocial late effects of cancer.

Including parents in intervention programs is crucial, says Dr. Kazak. In one study comparing 130 childhood leukemia survivors and their parents with 155 children and parents without illness, Dr. Kazak found that parents of survivors had significantly more post traumatic stress syndrome symptoms than parents of well children. Although only a small percentage of mothers met the full diagnostic criteria for PTS, more than half showed significant symptoms of the disorder.

In another study, Dr. Kazak found that symptoms of PTS can be reduced with treatment aimed at social support and family communications. Results measuring outcomes of 19 survivors who had completed treatment at least one year before and who participated with their families in the SCCIP program showed favorable responses on questions designed to evaluate anxiety related to surviving childhood cancer.

In addition to providing an opportunity for families to share their experiences, SCCIP emphasizes diet and lifestyle and other controllable aspects of their health. Patients also learn that PTS is a normal reaction to childhood cancer. "It's a true mind-body approach to a mind-body problem," says Dr. Kazak, who directs the SCCIP team.

Children's Hospital of Philadelphia

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