Network News - Winter/Spring 2010 - Canadian Breast Cancer ...

BRCA1/2 Testing:
Navigating Through the Various
Reactions: All Parts of the Process
By Mary Jane Esplen, PhD, RN
The cloning of cancer genes
and the offering of genetic
testing offers a clearer sense of
understanding why cancer developed
for some, while for others it helps to
gain certainty around an increased
risk that can move a person forward
in considering the various risk
management options. Genetic testing
can provide a sense of hope that
a person may be able to prevent a
specific cancer from occurring, or at
the very least allow for early detection.
At the same time, regardless of how
open or how clear the individual is
around the reasons for wanting to be
tested, the time of receiving the news
of the test result is a turning point of
sorts, as genetic knowledge is, in a
sense, life-altering information. In fact,
it is not uncommon for individuals
to describe life before and/or after a
genetic test result.
…not uncommon to
underestimate extent of
emotional reactions...
Prior to undergoing genetic testing,
individuals often have a sense that
they will likely have reactions and
may even anticipate exactly how they
will feel in response to a test result.
Some individuals feel that they are
likely to test positive, indicating that
they carry a mutation, while others
may expect that they likely do not
carry a mutation. Typically, such
expectations are based on the family
history experience (e.g. multiple
cancer diagnoses in a family or losses,
or shared characteristics of a family
member who had the disease (e.g.
“I look like my mother so I think I
probably carry the mutation”).
Even when a person anticipates
a particular response, it is not
uncommon to underestimate the
extent of emotional reactions that may
arise, and while an individual could
feel prepared for the test result, he/
she has no real way of knowing the
level of reactions – the roller coaster
emotions that can result after receiving
news of the test result or the difficult
choices regarding whether or not to
simply go for screening or to undergo
prophylactic surgery.
It is important for individuals to
realize that these reactions are a
normal part of the process. The
testing experience itself causes several
stressors, including evoked memories
of the cancer experiences of loved
ones; care-giving experiences for some,
and the painful memory of losses of
family members for others. It is also
normal to experience feelings of fear
and vulnerability, such as a loss of
confidence around one’s current and
future health. Some women describe
feeling like “damaged goods” or
articulate how they always felt they
would develop cancer and that it was
just a question of when.
Some individuals have endured
multiple losses and describe the test
result itself as a kind of loss. For
example, one woman who received
the news that she carries a BRCA1
gene mutation stated that, “I have lost
many in my family to cancer and now
with this news…I feel like I have had
another hit and lost something again.”
Understandably, a sense or memory
of a felt loss causes feelings of grief,
sadness or even anger, and the
power of such emotional reactions
Dr. Mary Jane Esplen
can be surprisingly strong, despite
that the losses may very well have
been experienced several years ago.
For those who have lost a mother or
father at a young age, for example,
the feelings can be very powerful.
Sometimes the person experiences
a strong identification with the lost
parent, such as a very deep sense of
feeling similar, so much so that life
may seem to even be repeating itself:
(e.g. “...my mother got ill with cancer
at 39...and I don’t think I will be 40
either...she died of cancer...maybe the
same will occur to me”). This powerful
force often creates a strong sense of
fear, so much so that a person can feel
pressure to achieve personal goals
prior to a time when one believes the
disease may emerge. Alternatively, it
can result in having concerns about
developing cancer which play out in
patterns, such as having a strong urge
to eat healthy, exercise or to use other
strategies to minimize the cancer risk.
If this is done in an unbalanced way,
it can begin to impact on a person’s
quality of life.
balance important …
Whether it is feelings of fear or a
sense of anger or loss, it is helpful to
recognize these feelings and allow
them to occur rather than put them
away or pretend that they do not exist,
as they are valid and it is helpful to
experience and process them rather
than have them impacting in more
unconscious ways.
The possession of genetic knowledge has
implications for other family members.
Health professionals often encourage
Network News Winter/Spring 2010 23