Back in 2010 my husband told me about a study they were doing on the BRCA gene at Women’s College. He had read about it in the Toronto Star and suggested that I should get tested for the gene. In order to qualify to be part of this study you had to be of Ashkenazi Jewish descent and have at least one relative who had been diagnosed with breast cancer.
I didn’t really think too much about it ... I went to get the test done because ... I could and I qualified. I was an Ashkenazi Jew and my paternal grandmother was diagnosed with breast cancer in her 40s (and passed away in her 50s).
Even though I had a family history - it was minimal. I didn’t really think I could be positive for this gene - most people who are positive for the BRCA gene have families that are riddled with breast and ovarian cancer (or at least that’s what I assumed).
A few weeks after my mouth swab I got the call that I had tested positive for BRCA1 - I didn’t really know what that meant other than I had a really high likelihood (80%) of developing breast and ovarian cancer as compared to the rest of the population. I wasn’t really upset by the news - I don’t think I really understood at the time how this was going to impact me, how I should feel or react, or what I should really do. I didn't know anyone else who had the gene and really didn't have anyone to talk to.
When I got the news I was in my mid 20s ... I was immediately put into a research study group through Women’s College led by (the brilliant) Dr Pamela Lenkov. The good news was that I was followed ... really well. I got physical checks by Dr Lenkov and had regular MRIs and Mammograms. I felt safer than I had ever felt - that if I did develop breast cancer it would be detected early on.
Then I hit 29 and started having kids ... lots of them. The thing is that you can’t have MRIs or Mammograms when you are pregnant or nursing ... and when you are pregnant your breasts are quite dense and lumpy. So checks became harder, they became a bit more stressful. There were false positives, biopsies ... luckily nothing cancerous but the anxiety of not knowing was there.
A lot of people think we had kids close in age because that’s what we wanted ... and we did. But one of the biggest reasons was because I knew I wanted a big family - 3 or 4 kids. And that if it didn’t happen immediately the pressure of getting my ovaries removed would be there. The unfortunate thing about ovarian cancer is that it is currently impossible to accurately screen for - once detected, it's too late. So I felt like I was on more of a timeline - I wanted my ovaries out by 40. Luckily pregnancy happened quickly and by the time I was 34 I had 4 kids.
I knew once I was done having kids my ovaries had to come out. There is some conflicting research on whether you can get your tubes out first and then wait until you are 40 to have your ovaries out. But I figured why wait? I know I’m done, I know I’m at very high risk ... what’s 5 years? So 4 months after my son was born I had my ovaries removed in 2017.
To be honest - that was the more impactful surgery. Removing my breasts didn’t have much effect on me (internally speaking). But after my ovaries were removed that’s when the fun happened! I had to go on hormone replacement therapy - which I think overall has been ok. Other than a few downsides to not having regular estrogen production (hello hormonal acne and thinning hair!) I have actually responded quite well to the medication I’m on.
In truth I was never planning to have a mastectomy - I was pretty content with how I was being followed and studied post babies and nursing. But then you hear stories ... bad ones. Stories that hit really close to home.
I can’t remember what the turning point was between me not getting surgery and then making the appointment to get a double mastectomy but it was fast. I started thinking about the surgery in the spring of 2017 and in October 2017 my prophylactic double mastectomy was booked. Once I made the decision to get it done I never really looked back. I wasn’t scared or anxious - I knew it was the right decision for me.
The morning of my mastectomy I was oddly calm ... I wasn’t stressed. To be honest I was looking forward to having a break and a full night sleep away from the kids! (Sort of like a staycation??) I was excited to not have to worry about breast cancer and I was even more excited about the new perky boobs I was going to get (after my 4 kids had sucked the life out of my current saggy boob situation).
I had my partial reconstruction at the time of my mastectomy in October and had a second surgery in march 2018 to finish my reconstruction.
I feel lucky that I did that test almost 10 years ago. And that we have the kind of medical care we do in Canada ... that we have access to one of the best breast cancer hospitals in the world (and the best reconstructive doctors out there).
I posted my story last year on my personal Instagram. I talk very openly about this gene and my situation and the decisions I have made (and why I made them). The best part about me being open is talking to so many other young girls - about their stories. Some who have the gene and some who don’t. Some who have had breast cancer and some who have taken proactive measures like me.
The thing I have learned is it really doesn’t matter your family history, if you have this gene or if you don’t. It doesn’t matter how pretty, smart, funny or cool you are. If you are a woman you are at risk. Be smart about self exams, about doing your research, knowing your body and don't ever second guess yourself ... if something feels funny get it checked.
It's been a year and I have never been happier with the decision I made. To not have to worry about breast cancer, about getting checks every few months, about waiting and wondering, ... and really to never having to wear a bra again thanks to my new perky AF breasts #winning.