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

people to give this information to
other family members who may be at
risk for cancer and who may benefit
from genetic testing. Having genetic
information can pose challenges for
many people who may not be close to
relatives or those who have relatives
living a great geographical distance
away. How does one begin to inform
these individuals? Should it be a
telephone call or a letter? How does one
breach the topic of cancer? Individuals
may fear that they will cause the
relative to become emotional or have
challenges in even describing and giving
out complex genetic terms or their
associated implications.
Other challenges include the
implications for the relevance of the
genetic information for a person’s
children. Most parents will want to
inform their children that they are
eligible for genetic testing at some
stage; however, important questions
need to be considered: How do I tell
my daughter or son? At what age
should I inform them? How will they
react? How much should I tell them?
Should I wait until they are at the age
of screening? Understandable concerns
include the potential reactions of a
child and whether or not he or she
will be able to handle the news. Other
common concerns include the feeling
that one is holding on to information
until feeling prepared to disclose it,
which can result in a person feeling
less open or even feeling a sense that
he or she has secret knowledge.
Options information
follow test results
Following the news of the test
result, individuals are typically
given information on a number of
options to consider in managing his
or her risk, including the need for
multiple screening tests to monitor
health (mammograms, ultrasounds,
MRIs), and the option of prophylactic
surgeries (prophylactic mastectomies
or prophylactic oopherectomy). These
are very personal decisions, and even
within families it is not uncommon for
siblings to choose different options.
For some women, the recommendation
of being followed through high risk
screening programs is sufficient
and they can manage the associated
anxiety that occurs when going for
checkups. Other women feel that
prophylactic surgery is the best choice
for them in managing their cancer risk.
The decision-making around these
preventive and monitoring options
can be challenging and leave a woman
feeling unclear and uncertain as to
which choice is best for her.
While all women clearly want to
lower their cancer risk, there is a
fundamental difference between
making a choice to have surgery
when in good health and having
surgery once disease is detected. When
making these challenging decisions,
it is important for women to have
opportunities to explore their personal
pros and cons, value systems and to
gain a clearer understanding about
which options seem best suited for
them. There can be significant value
in working through these decisions
with a healthcare professional such
as a mental health professional, a
nurse, or with her genetic counsellor.
Women adjust more optimally to their
decisions when they feel as though
they were fully informed, had taken
the time to consider their options, had
opportunities to explore their views,
understood the implications and
potential results and side effects, and
felt ready to make them.
Regardless of how well-informed
a woman feels, it is important to
recognize that along with the challenges
around medical decisions, there will
be emotional and physical implications
that require time and an adjustment
period. Again, these reactions are
important to recognize as a normal part
of the process. Surgeries which alter
functioning and physical appearance or
sensation will result in changes to body
image and feelings about oneself, and
can affect self-esteem and require some
time to adjust to.
Common emotional reactions include
feelings of anxiety prior to having
surgery, feelings of sadness, loss and
a need to mourn the loss of the prior
physical self. It takes time for the
woman to become familiar with her
new sense of self. Women who feel
that they are overwhelmed with these
emotional reactions or believe that
the adjustment period may be taking
too long should consider seeking
professional help from a counsellor,
meeting with other women in similar
situations through peer support or
support groups, or look for relaxation
and meditation techniques to manage
stress levels and emotional reactions.
The changes that occur as a result of
surgeries can also have implications
for intimate relationships. Sometimes
it is difficult for partners to understand
how to assist a woman in her
adjustment, or couples may find it
challenging to openly discuss their
perspectives and fears surrounding
the changes or their own personal
reactions. For example, women can
feel like they have lost their sense of
femininity or that they have lost the
ability to perform a certain role (e.g.
reproductive roles). They may feel
“different” or even older. Some find
themselves with a lower libido if they
have entered into menopause. Most
women work successfully through
these feelings alone or with their own
supports, but health professionals or
counsellors can be helpful in assisting
women or couples to navigate these
emotional challenges. Following their
adjustment periods, most women
feel satisfied that they made the right
decision and benefit through the
comfort provided by having a lower
risk for cancer as a result of the choice
they made.
Other challenges around surgery
involve discussions with children
to inform them that their mother is
24 Network News Winter/Spring 2010