“Mommy, where are your nipples?”
These words I never thought I would hear coming out of my kid’s mouth. This is my reality; and I promised myself when my journey began over six years ago, that I would always be honest with them. I respond with, “The doctors removed them along with my boobies and fixed them so that I would never get sick with breast cancer.”
To those who don’t know about hereditary breast and/or ovarian cancer it makes no sense. People aren’t able to understand that by removing healthy breasts and ovaries, I have reduced my chances of developing cancer to less than 2-5%. If I had a dollar for every person that told me that I could eat right or exercise to avoid my risk of cancer, well, I would have a lot of money! As a BRCA2 mutation carrier, I was given up to an 87% risk of breast cancer and up to 40% risk of ovarian cancer. That knowledge alone was enough for me to take drastic actions. Cancer was NOT going to get me. These are the realities of a previvor.
A mutated BRCA gene cannot be repaired. It cannot be fixed by eating right, exercising, or with natural remedies. If you have a mutated BRCA gene it’s because you were born with it. It has been ingrained in your DNA from the time of conception. If either of your parents has the BRCA mutation then there is a 50% chance of passing it onto their children. And yes, males can be carriers as well.
September 2008, when my dad called to tell me that he was waiting for his results from a genetic test, I had no idea what he was talking about. He explained that it was a blood test to see if he carries a mutated BRCA gene which could be passed down to me and put me at an extremely high risk for certain cancers. We didn’t have any breast cancer in our family that I was aware of, and, although sadly, one of my cousins was fighting ovarian cancer, I didn’t see how it was connected. While I knew he lost his mother to cancer while he was in his teens, I never knew the details.
On December 27th 2008, at my own genetic testing appointment I received my positive BRCA mutation results. Soon after my genetic counselling appointment, I learned from my father that he was able trace our family tree as well as health records from my cousin (who was fighting ovarian cancer at the time). I discovered that there was not only ovarian cancer in my paternal family tree, but breast cancer and skin cancer too (which we BRCA2 mutants have a slightly higher risk for).
My amazing husband and best friend Joel
Walking out of my genetic counselling appointment, hand in hand with my amazingly supportive husband, my decision was made. I was going to have a risk-reducing double mastectomy and hysterectomy with oophorectomy (removal of the ovaries), ASAP!
Armed with my results, I got online to search for others who were in a similar situation. I was shocked to find almost no information or support about BRCA mutations. I needed to talk to others who knew what I was going through. I needed to connect with others who were living with a BRCA mutation. I needed to bond with others who understood how I was feeling.
Panic set in and breast and ovarian cancer took over every waking thought. Every ache and pain I felt I thought was cancer. My breasts and ovaries felt like ticking time bombs, like they were plotting against me. I had to get rid of them. Right away! I felt that it was not a matter of if I was going to get cancer but when. All I could think was, I’m going to get cancer and die young. I’d leave my husband a widower and my children without a mother. I was NOT going to let that happen!
On February 10th 2009, I had a full risk-reducing hysterectomy with oophorectomy. Once I recovered, I went back into the hospital on April 30th, 2009 to undergo a risk-reducing double mastectomy with the beginning of reconstruction (or, PBM; Prophylactic Bilateral Mastectomy as those of us in the BRCA community refer to it). From the moment I woke up from both surgeries, my fear was gone. I never once questioned my decisions. I was so proud of myself! I was elated! I had taken control of my life and dealt cancer a pre-emptive strike!
Going through with my surgeries and reconstruction was not easy and I was still looking for support which I wasn’t finding. Thankfully I found one girl who I connected with online, Teri Smieja, who also had a BRCA mutation and was going through the same preventative surgeries as me. It was such a relief to talk with someone who just got it. I felt like I wasn’t alone. It made all the difference during my journey and we have since become amazing friends.
Teri Smieja and I – Founders of BRCA Sisterhood
We decided that we would start a private Facebook group for women like us who needed support. In December 2009 we started the BRCA Sisterhood. It started with eleven women and has since grown into the largest, most active Facebook group of its kind with almost 5000 women worldwide and growing daily. It is a group that is filled with support and understanding. There is no judgment only love. Whether someone is choosing surveillance, chemo-prevention or risk-reducing surgeries, there is someone in the group going through the same thing.
Through the love, support and appreciation of all the women I have met, grew a passion for advocacy. I realized that I could make a difference. I felt something deep inside of me take over. The BRCA Sisterhood wasn’t enough, I needed to do more.
9 months ago I started a Montreal BRCA support group. The group meets once a month and allows everyone to have a face to face connection. It has been quite successful and I have received great feedback from the women who have attended.
I still feel that I still have so much to offer and share, which brings me to this, my next project, my blog. When Lacuna Loft approached me about writing a blog for them I was touched and humbled and happily agreed! Being able to affiliate myself with such a fabulous online cancer magazine will be a tremendous help in reaching a wider audience.
Whether you are dealing with hereditary breast and/or ovarian cancer or know someone who, is I encourage you to make sure that they ask questions, educate themselves and reach out and ask for help. No one dealing with something as serious as Cancer should ever feel alone. I have and will always be an open book about my risk reducing surgeries so if you have any questions at all please don’t hesitate to ask.
Much love and health,
Karen
xox
“We make a living by what we get, but we make a life by what we give.”
Winston Churchill.
Are you a previvor? Have any love or tips to share?
