Lacuna Loft is excited to continue introducing some guest bloggers! These great folks represent a variety of perspectives on the myriad of topics covered here at Lacuna Loft. Before everyone starts really getting into the nitty-gritty of all they have to say, we wanted to introduce them a bit. Without further ado, here is Karen!
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I removed healthy body parts. My breasts and ovaries were plotting against me. Cancer was lurking in the background so I dealt it a pre-emptive strike. Why? I tested positive for the BRCA2 genetic mutation. It gave me an 87% chance of getting breast cancer and a 50% chance of getting ovarian cancer. If you knew your chance of winning the lotto was 87% wouldn’t you buy a lottery ticket? Or if the pilot told you that you had an 87% chance of crashing, would you board the plane?
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.
