Child cancer survivors can
suffer post-traumatic syndrome
PHILADELPHIA -- April
23, 2001 -- While surviving cancer beats the alternative, kids
who survive the fight often face lifelong effects stemming from
either the cancer itself or the treatment, according to growing
research findings.
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 Lee, 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."
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.
Dr. Anna Meadows director
of cancer survivorship program at Children's Hospital in Philadelphia,
first published data showing that children with Hodgkin's disease
have a high risk of developing a second form of cancer, and in
another study, she confirmed in 1996 the high rate of breast
cancer in this group of survivors. She says the late effects
of cancer go beyond the physical.
"Survivors have
problems with infertility, growth, cardiac and pulmonary function
and cognitive changes. These all serve as long-term reminders
of their treatment," said Meadows in a prepared statement.
Meadows and her colleagues
at Philadelphia's Children's Hospital for decades have studied
the late effects -- on both body and mind -- of childhood cancer.
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.
According to recent
research, 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.
In 1996, Children's
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. The ongoing
CCSS study involves 14,000 childhood cancer survivors and initially
focused on the late-effects of treatment therapies on the body.
"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," says Meadows, who
is also the first director of the National Cancer Institute's
Office of Cancer Survivorship.
"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," she says.
Recently, research
expanded to include the psychosocial effects of surviving childhood
cancer -- and the findings were startling says Dr. Anne E. Kazak,
director of psychology at Children's.
"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,"
Kazak says. "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."
PTS is most likely
to appear in post adolescence. In a groundbreaking pilot study
involving young adults age 18 to 40 (published in the Dec. 2000
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.
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, Kazak says.
Including parents in
intervention programs is crucial, she adds. In one study comparing
130 childhood leukemia survivors and their parents with 155 children
and parents without illness, 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.
Kazak's team is now
working to find ways to treat the symptoms of PTS. A small intervention
study involving 19 survivors 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, the program
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 Kazak.
SOURCE: Children's Hospital of
Philadelphia
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