By Anna Kheyfets
Part 3 - What does this mean for ME?
In part one of this
series, you learned about BRCA genes and why someone with a family history of
cancer, like myself, may or may not choose to get tested. In part two, you
learned about possible results of a BRCA genetic test. In the third and final
installment of this series, I explore what BRCA testing meant for me.
Many genetic mutations are inherited from your biological
parents. Finding out that a family member, like your mom, has cancer can be
devastating and it may take time to decide whether it is right for you to go
through testing. Being tested allows you to work with your doctor or genetic
counselor to create a personalized plan that allows for early detection and
care. It gives you the option of making changes in your life now to help
prevent cancer in the future if you find you have a higher risk. However, you
can also make proactive changes without choosing to test.
The long(er) answer is, if you are thinking about testing,
take your time and do your research. Advocate for yourself. Speak to a genetic
counselor to help assess your risk, your options, and
to better understand the process. The decision to be tested can be emotional
with many of the “what ifs.” When being tested, I began to fill with
questions about the risks of genetic testing, like:
- What would my life
look like if I test positive for a cancer gene?
- Would I have to have
my ovaries, uterus, or breasts removed? When?
- If I have these
surgeries, what will that mean for my body image?
- Can I have children?
Will they get this gene?
I had all these questions, and more, when I was tested. I
kept envisioning future conversations with partners, friends and family should I
find out that I have the gene. I asked my doctor what impact this test would
have on my physical health, but also my sexual and mental health. She reassured
me that it was in my own hands, and regardless of what the results said, I
would have support and options for what to do next. If the results came back
positive for the genetic mutation, I would have the option to wait until I was
older to consider some preventative measures.
Preventive measures such as breast, uterus and ovary removal
can affect your body image and sex life. These are your sex organs—of course,
sex will look different without them! A WomanLab blogger once told us that, “the peace of mind regarding
my healthy future far outweighs the persistent body image issues that accompany
waking up in a new body that looks and feels very unnatural.”
When considering genetic testing and preventive treatments, it
is important that women have information about what changes these
health-preserving treatments might cause and
the ways in which negative side effects can be treated.
Ok, I thought, I am ready for whatever comes my way. But
here’s the thing… I don’t think I was. I wasn’t prepared for my heart beating
out of my chest when I went back in to get my results, but I also wasn’t
prepared for the wave of relief that washed over me when I learned I didn’t
have the gene mutation.
As it turns out, I did not feel equipped for the possibility
to learn that I did have the gene. What would I tell my mom? My sister? Would I
pass the gene mutation onto my future kids? Will I even have kids? Luckily, my
results came back with no indication of BRCA gene mutations so I did not have
to have all these questions answered. It was a relief, but also only a small
aspect of the many factors that build up and determine whether I will have
cancer in the future.
Ok, so you’ve done
your research and maybe I’ve piqued your interest. If you feel ready, talk to
your doctor and a genetic counselor about if genetic testing is right for you.
Not sure where to get started? The Sarnoff Center offers access to a
genetic counselor who can answer questions, provide guidance, and help each
individual identify an appropriate clinical resource if needed. Contact us at
(312) 357-4718 or GeneticScreening@juf.org for
Anna Kheyfets is a
senior at the University of Chicago. She will be graduating March 2019 with a
degree in Anthropology and Biology. She is an avid reader, writer, New Yorker,
and proponent of women’s health and rights. She has been an intern at WomanLab
(www.womanlab.org) in the Lindau Lab at the University of Chicago since January 2018,
where she has contributed to blog content, analytics and the other research
efforts. What’s next? After graduation she will be continuing her research in
Women’s Health back in NYC during her gap year before she begins medical school
and is looking forward to some lengthy subway rides.