Effects of Childhood Cancer Can Linger Long After Disease Is Gone
McKee and the medical team at Cook Children's know the
importance of talking about how the illness and treatment may impact their
lives. McKee says that other childhood cancer survivors talked with him about
what to expect when he was dealing with it and it helped him cope. A few years
after his transplant, McKee began volunteering his time to counsel others and
continues to do so.
As evidenced by McKee's experience, Cook Children's has always
diligently provided emotional and medical care for its childhood cancer
survivors -- even into their 30s. Recently, they expanded that effort by
launching the Life After Cancer Program with the help of cyclist and
cancer survivor Lance Armstrong and his foundation.
"Once we realize a child will survive, than we have to look at
what their long-term care will be," says Jeffrey Murray, MD, pediatric
oncologist and medical director of the program. "We have to get any issues they
may have out on the table and discuss them."
Under the program, pediatric doctors in all specialties are
available for consultation, along with nurses, a psychologist, and a social
worker. The program will do baseline neuropsychological testing when children
are diagnosed so doctors can monitor them for any learning problems during
treatment, follow-up, and recovery.
"A lot of the patients do have fatigue and many have
sociopsychological problems, maybe even posttraumatic stress syndrome," says
Lisa Bashore, MS, RN, CPNP, director of the Life After Cancer Program.
She says dealing with cancer, treatment, and recovery often is more difficult
for teenagers than for the younger children.
"Adolescence is a very difficult time for anyone. They want to
be independent and away from their parents with their friends," Bashore tells
WebMD. "But for kids with cancer, it's even more difficult because they are
facing isolation and restrictions."
McKee says that he was old enough to understand the
consequences of Hodgkin's and the transplant, and he trusted the doctors. "It
made me realize they knew what they were doing."
But some older youngsters have more emotional problems
because they are aware of what's happening to them, Murray and Bashore
say. The authors of the Journal of Clinical Oncology paper echo this.
They say in earlier studies they found a much lower rate -- 4.5% -- of
posttraumatic stress disorder in cancer survivors aged 8 to 19. They believe
this may be because younger children aren't aware of their own mortality and
often don't realize the seriousness of the disease. The average age of the
young adults in the current study was 25.
The researchers warn that if young cancer survivors are too
anxious about their future, they may stop seeking the medical and psychological
care they need. The authors advise that healthcare professionals honestly
discuss long-term effects and establish a caring relationship with young adult
survivors to support their development.