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DECISION MAKING IN THE CONTEXT OF BREAST CANCER CHEMOPREVENTION
benefıts. 22 However, to truly understand, evaluate, and predict
the uptake of SERM drugs, it may be crucial to understand
women’s perceptions of chemoprevention, as these are
likely to influence decision making.
PERCEPTIONS OF CHEMOPREVENTION
Below are presented some of the prevailing perceptions, assumptions,
and beliefs about chemoprevention, as revealed
by research to date. However, most of this research has
looked only at tamoxifen. The study of Fagerlin et al 23 provides
one of the few exceptions, from which we may also
learn about perceptions of raloxifene.
What’s in a Name? Tamoxifen and Chemoprevention
Tamoxifen has been used for several decades in the treatment
of breast cancer to prevent the recurrence of disease. For
some women, tamoxifen is therefore associated with cancer
and is considered a “cancer drug.” 20 These women expressed
the fear that if they took tamoxifen, others may conclude that
they have breast cancer. Because of the perception of tamoxifen
as a cancer drug and confusion over the difference between
chemotherapy and chemoprevention, some women
have expressed fear of hair loss or other side effects that are
more often associated with chemotherapy. 20,28
Side Effects
Several studies have shown that women are concerned about
the side effects of SERM use. 18,29 Moreover, these concerns
are not only related to the severe side effects such as endometrial
cancers, but also to the more common but less serious
effects of taking the drugs, such as hot flashes. For
example, one nested qualitative study reported that participants
in focus group discussions were reluctant to end
hormone replacement therapy in favor of chemoprevention.
29 SERMs may induce hot flashes, which are reduced
by hormone replacement therapy. Although hot flashes
may not be considered serious from a medical point of
view, they can impair a woman’s day-to-day activities and
reduce quality of life.
Risk Perception
Many women’s perception of their breast cancer risk differs
from the objective risk estimates derived from personalized
risk assessments such as the Gail score or Claus model.
Indeed, when objective breast cancer risk estimates are compared
to women’s own estimates, women regularly overestimate
their personal risk level. 30 This generally high level of
risk perception may influence a woman’s decision making
about chemoprevention. When women receive their objective
personalized risk estimate they may be surprised by the
relatively low values, and this may deter them from taking
preventive action that could increase the risk of other
diseases. 23,24,31-33
On the other hand, there is evidence that women may not
necessarily believe the risk levels provided through personalized
risk estimates. 34 Furthermore, women’s personal assessments
of their risk have been shown to be extremely
persistent and may not change through counseling. In one
study, for example, among women attending a high-risk
clinic in the United States to discuss their breast cancer
risk and treatment options the women’s preferences regarding
chemoprevention were shown to be stable over
time. The women were surveyed before and after the consultation,
and their level of breast cancer risk that would
indicate chemoprevention uptake was similar at both
points. 27 In this study, 75% of the women indicated that
they would take chemoprevention for breast cancer risk
reduction if their lifetime risk of developing breast cancer
was estimated at 60%. In comparison, the actual average
risk in this sample of high-risk women was 18.5% (as determined
by the Gail score).
Efficacy
It has been suggested that women might not believe that taking
a chemopreventive agent will substantially reduce their
breast cancer risk. 18,23 Such assumptions may be related to
the low absolute risk scores of most of the women whose decision
making patterns regarding chemoprevention have
been studied. An accurate understanding of one’s risk of developing
breast cancer may therefore lead to the belief that
the risk is too small to warrant action, particularly if such
action in itself involves risks.
Taking Medicines
The idea of taking medication on a daily basis over a period of
5 years may be seen by some women as a constant reminder
of their breast cancer risk and the potential of developing the
disease. 20 This has been shown to be considered a drawback
by some women when considering chemoprevention. Other
studies have found that women are reluctant to take medicine
in general because it is seen as “unnatural.” 28 A general aversion
to taking medicines has also been described in other
contexts. This reluctance might be heightened for medicines
that are not perceived as “necessary.” Such generalized attitudes
toward medications are likely to influence the perception
of chemoprevention drugs and thus affect the overall
acceptance of their use. This example also highlights the importance
of viewing something (such as a medicine) as necessary
in order to consider taking it.
WHAT CONSTITUTES A RISK?
Findings of the numerous studies and papers that have been
published on women’s decision making approaches to chemoprevention
for breast cancer can be summarized as follows:
increased knowledge and understanding of the risks
and benefıts involved in taking SERMs does not lead to increased
uptake of chemoprevention for the purpose of reducing
breast cancer risk 16 ; instead, women become more
reluctant to take medication with risks involved. 23,24,35
At the same time, studies that have looked at the intention
to take chemoprevention have regularly found higher num-
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