Until
6 years ago my father and I had never spoken of his family history. After his
first cousin was diagnosed with ovarian cancer and tested positive for the BRCA
mutation I learned the truth; my paternal grandmother and great aunt both died
of breast and ovarian cancer. Both were in their forties.
Knowing
I had a 50/50 chance of inheriting the gene mutation from my BRCA2 positive
father, I booked an appointment with a genetic counselor and waited for an
anxiety ridden two months for my results. My husband was and is very supportive
and my kids (who were two and four at the time) kept me busy but I needed a
support system of women who were living with BRCA mutations who “got” what I
was going through. I needed someone to talk to who understood what the waiting
was doing to me emotionally and mentally.
Armed
with a positive BRCA test, I moved quickly to schedule a risk reducing
hysterectomy including my ovaries and a preventative double mastectomy with
reconstruction. From the moment of my diagnosis knowing I was at such high risk
of getting breast and or ovarian cancer I felt fearful and panicked. My biggest
concern was waiting too long to have these surgeries. I wasn’t going to let
cancer get me! The odds were too high. I was booked for surgery within 2
months.
I
checked online hoping to find other BRCA positive women and only found a
handful of people going through the same thing. They have since become some of
my best friends. One of those girls, Teri Smieja, co-author of Letters to
Doctors and I decided to create our own community of support and information.
We decided to start the BRCA Sisterhood on Facebook, a private women-only
support group for those dealing with hereditary breast and/ovarian cancer.
BRCA
mutation carriers face different issues than those diagnosed with cancer. They
have watched family members die and feel like ticking time bombs themselves.
Many still face judgment from their peers and even family members who disagree
with the choices they are making. Whether choosing surgery, medication or
surveillance, there is no right way to handle a diagnosis and the BRCA is there regardless of which path they choose. The BRCA
Sisterhood is the largest BRCA support group on Facebook and to date has over
4000 members worldwide.
Earlier
this year, I started the first BRCA support group in Montreal, Canada. BRCA
Chat Montreal is a group for women dealing with BRCA or any other hereditary
breast and or ovarian cancer. The first meeting was very successful and I have
heard from many women since, expressing interest in upcoming meetings.
My
passion will not end here; I will continue to offer more support and create
awareness for hereditary breast and ovarian cancer. I will continue until a
cure is found. Until women like me don’t have to remove healthy organs to
prevent cancer. I guess that’s just another part of my DNA that is out of my
control.