PEDIATRICIAN Spring 2003 - AAP-CA

Childhood Cancer Survivors Report Life Changes
Brad J. Zebrack, Ph.D., M.S.W., and Mark A. Chesler, Ph.D.
“I used to get really depressed
on the anniversary when I got
sick, August 4. I used to get really
upset; I even wore black to work.
You know, this is the day my life
changed... Like this is really weird,
I see a grave, and that’s the person
that died, on August 4, 1985. She’s
gone. Because you know, my life
had to change, I had cancer and
I can’t go back there, I can’t go in
the past, so it’s like, she’s gone.
(24-year old survivor of childhood
cancer).”
Prior to the 1970s and the advent and use of
multi-modal chemotherapy, survival rates
for children diagnosed with leukemia and
other forms of cancer were dismal. Today,
advances in treatment and the coordination of
pediatric treatment through clinical trials have
greatly increased the long-term life chances
of these young people. Indeed, recent reports
indicate that 75% of children diagnosed with
various forms of cancer in the United States
are expected to survive their disease and treatment.
As we witness increasing lengths of survival
for individuals diagnosed with cancer as
children and a growing number of long-term
survivors there is no indication of their quality
of life expected, enjoyed, or endured. In
1998, the American Cancer Society Task Force
on Children and Cancer reported that “(T)he
progress achieved in attaining 80% survival
among children and adolescents and young
adults with cancer can be justified only if their
physical, emotional, and social quality of life
also are protected.” Thus, success in pediatric
oncology requires researchers and health care
professionals to attend to the psychosocial and
behavioral consequences of treatment and to
the quality of life of these survivors.
Cancer Survivorship
Research literature on cancer survivors consistently
refers to the notion that experiencing
cancer can lead to changes in people’s lives.
While many studies of cancer survivors document
long-term sequelae as having deleterious
effects on psychological well-being and social
functioning, relatively few have investigated
positive adaptation and factors associated with
the potentials for positive life changes which
survivors attribute to cancer.
People often report that they have made
positive changes in themselves and their lives
after a negative event or trauma. Several scholars
have described such changes as part of a
process of cognitive reappraisal in the face
of, or aftermath of, trauma. People thus may
reframe or reinterpret their illness experience
or themselves (e.g., from “victim to victor”),
making new meaning out of their situation.
Seminal work by Taylor indicated that a sizable
proportion of women experienced positive
life changes following their experiences
with breast cancer. Similarly, in a comparison
of adult bone marrow transplant patients to
a matched control group without a history
of cancer, the patients equaled or exceeded
controls in the likelihood of reporting positive
psychosocial changes in life.
Some investigators, however, caution
against such interpretations in that reports of
positive outcomes may be “illusions,” “repressive
denial,” or self-serving distortions that are
more typical of poor mental health rather than
positive adaptation. Our own view, based on
empirical work as well as on our own personal
and clinical experiences, is that cancer and
other trauma should not be viewed as a stressor
with uniformly negative outcomes but rather as
transitional events that create the potential for
both positive and negative change.
Life changes for survivors of
childhood cancer
These issues are beginning to surface in
recent research with survivors of childhood
cancer. There is general agreement that many
adolescent and young adult survivors of childhood
cancer have lasting physical deficits and
that some experience negative psychological
changes as a result of their illness. At the same
time, several scholars argue from empirical
findings that demonstrate that a sizable portion
of this population is coping more positively
than their peers and that they have changed
their psychologic orientations and outlooks
for the better. These positive outcomes are not
necessarily unrealistic or naïve “halo effects”
because often they are accompanied simultaneously
by details of how cancer has had deleterious
effects. Furthermore, these results mirror
findings and interpretations reported in the
literature about gains in “secondary benefits”
such as enhanced relationships with family
members, emotional maturity, and greater life
appreciation.
Young adult survivors’ own words illuminate
the changes they attribute to having had
cancer as children.
“I feel I’ve learned good lessons
from it (my cancer). I realize what’s
important in life and I don’t take
everything for granted. I want to
live life to the fullest.”
“I think I’m stronger. I am very
independent now. I set my mind
to doing something and I do it. I
think a part of me has definitely
been impacted by the fact that
I’ve had cancer. There are a lot
of go-getters out there, but when
you’ve accomplished something
like surviving the cancer and
treatments, when you’ve gotten
through something like that, it just
gives you a determination, a drive,
to achieve well in school and to do
well in life.”
In addition, many long-term survivors of
pediatric malignancies indicate that there is
something inherent to the cancer experience
that makes dealing with the “normal” challenges
of every day life different from a life
without cancer.
“You know, it’s definitely a huge
adjustment getting married, and
having a child, so that’s adjustment
CALIFORNIA PEDIATRICIAN — SPRING 2003/ 3