My name is Hannah and this is my story.
My family history on my Dads side is riddled with young breast and ovarian cancer. Because of this, they discovered my family had the BRCA1 gene back in the 1990s. I remember my father being tested for the gene when I was in my teens and at the time I was pretty determined that I would get tested as soon as I was legally able to at 18. I didn’t end up seeing my first geneticist until I was 19 and sitting down with the geneticist was the first time I really understood the extent of my family history of cancer. I distinctly remember her pulling out a copy of my family tree on my and showing me all the relatives affected by cancer, their ages of diagnosis, length of treatment, recurrence and death. Growing up in NZ and most of Dads side of the family living in Australia I didn’t have a close relationship with most of them, but it was still quite a shocking history. After seeing the geneticist at the time I didn’t go back to be tested, life took its course and the BRCA gene cloud had a break from hanging over my head for a while.
After a couple of years, at 21 the dark BRCA cloud returned and I booked into see another Geneticist. She talked me through what the results could mean for my life, posed the questions of if I really want the answers or not and how the results could affect my family. She talked through the risks again and what they would mean for my future; high risk screening and/or preventative surgeries. For me it was not an option not to get tested. I have always been so aware of the gene since finding out dad was a carrier it was not something I could just forget existed. The test would either be a blessing, that I didn’t have the gene and I could move on with my life, or it would be positive, at which point I could make a plan for how I was going to deal with it. I figured I might as well know now. I was tested for and confirmed to have the BRCA1 genetic mutation in 2012. At 21 I didn’t really need to do too much about it right then, it was just information.
In 2013 the whole BRCA1 thing started to become a bigger deal in my head and I became pretty obsessive with my research for several months, stressed about the effects and what my options were. Every time my brain finally settled down there would be another news article about someone effected by the gene that would have me delving into the facts all over again. Feeling the huge weight on my shoulders and the need to act to regain some sense of control over this gene I booked in to see the another Genetic Counsellor. This geneticist was the same one my Grannie had seen. She knew my family history well which gave a certain sense of comfort. I explained to her how this is a big deal for me that I want to act and not just wait around. In my appointment she gave me all the options and the facts and calmed alot of my thought processes. The biggest thing I took away this time, was that my ovarian cancer risk doesn’t really hit till 35, so for now at least, I could put that to bed. Being able to focus on one decision at a time is a small blessing.
I started high-risk screening in November last year (2015), 6 monthly screening with alternating MRIs, and mammogram + ultrasounds. I am irrationally petrified of needles and no one is a big fan of small spaces and loud noises which MRI machines so perfectly combine, so screening is an exceptionally unpleasant experience. For many women, high-risk screening is a fantastic option, however for me I don’t play sitting duck very well. Whilst my current risk of cancer is low, it will increase exponentially the closer I get to 30 and beyond. The waiting game with screening, the 6 monthly appointments, its not something I want to spend my life doing.
In November this year I am to have a prophylactic (preventative) bilateral mastectomy and reconstruction. It has taken a long time to get to this decision with obsessive amounts of research, a multitude of specialist appointments, some show and tell at the Pink Hope Conference in Melbourne and lots of really hard questions. It will reduce my breast cancer risk from an 80% lifetime risk down to just 5%. It is a hard and very personal decision to make. It will have many physical and psychological effects, some I am probably still not really prepared for, but for me it is the right decision and the right time in my life.
Connecting with other people through Pink Hope has provided invaluable support. Hearing their stories, asking lots of questions and knowing that whilst this is a black cloud, we are still a normal bunch of happy humans just with a few hard decisions to make.
I am excited for the constant research that is going on in this area and have high hopes for the future of BRCA mutation carriers having a few more options at their finger tips. I am hopeful that one of those breakthroughs may give me some better options once I get to 35 and have to face decisions over my ovarian cancer risk.