My journey started when I was 19 years of age when I found out that my father was BRCA1, his family had had a long history of women diagnosed with breast cancer, the youngest being just 24 years of age.
I never met my grandmother who passed away from breast cancer when my father was little.
In the beginning my sister and I opted to have regular screenings before we made the decision to have the genetic testing done to find out for certain if we were carriers of this gene. After six monthly screens and testings and false positive biopsies we both decided to have the gentic testing done.
When I was 21 and my sister 19, I found out I did have the BRCA1 mutation and she did not.
Finding out you have this mutation, spins your thinking into a whirlwind of emotions and thoughts, knowing in my case I had over a 90% chance of developing breast cancer scared me and made me realise my mortality early on in my life. While my friends were thinking about what seemed like trivial things, I was thinking about what I needed to do over the next twenty years to protect myself and take control of my health to live a fulfilled life.
The decision for me to undergo the double prophylactic mastectomy was not a hard decision, for me it was the only decision. My body felt like a ticking bomb, I was no longer thinking if I would get breast cancer it was when would I get it.
At 23 I had my surgery, I was newly engaged and planning to get married 3 months later. My now husband was amazing, we had not been together long when I found out my positive result, I told him of my plans for my surgery and he was onboard, but I was going ahead regardless.
When I attended appointments with my breast surgeon and plastic surgeon, it was all laid out how easy it would be, I would go in for the surgery, tissue expanders put in and 2 months later I would have the implant exchange surgery and then I would get married and life would carry on. This proved to be very wrong.
My surgery went well, it was tough and hard, emotional and raw, but also empowering. My support network was there at every step and helped me through. Following my stay in hospital I went home however the pain that I experienced was extreme, every day I would think surely it needs to be getting better, but it was not. After 3 weeks I was admitted back into hospital with an infection in both sides of my chest and scheduled for surgery.
I woke up from that surgery with relief from pain but also a flat, concave chest. Nothing could have prepared me for this. Over the next couple of years, I managed levels of different emotions; grief, disappointment, lack of self-confidence, why me but also, relief. There were conversations of a reconstruction, but it all seemed very overwhelming for me as these were going to be big operations as I had decided implants were out of the question.
As time has gone (ten years now) on I have learnt to accept my body and exercise and fitness has helped manage this for me, I feel good about myself when I am active.
After my surgeries and experiences, my husband and I made the decision that our future children were not going to have to go through what I had been through or my future grandchildren suffer the loss of a parent so young like my father did.
We investigated and started our journey into IVF with pre genetic testing. This process involves embryos being biopsied and screened at 2 days old to determine which carry the gene mutation. This process took close to 18 months to complete before being able to reach the stage of having an embryo implanted. 7 years on we have a crazy household of three girls (6, 5 and 10 months) that we know do not carry this gene. We have been blessed that this process worked for us and passing on this gene stops with me.
The next step in my BRCA journey will be to have my ovaries removed as my risk of developing ovarian cancer is also increased, but not as heightened in my family’s history. This is something I actively have on my mind presently as my family is now complete. Three years ago I had my tubes removed, which is a precaution before having your ovaries removed. Research has shown that most cancers occur in the fallopian tubes first before it reaches the ovaries.
Having my ovaries removed and going into an early menopause does overwhelm me and scare me but I have learnt and am comforted by knowing that as a woman we are not solely defined by our ovaries and breasts.
When I look back on the last twelve years of my life, I am grateful that I have had these experiences as they have shaped and moulded me into the person I am today. Resilience is only strengthened by our own experiences and these experiences have done that. I have shown my strength, my resilience and I am proud of myself, I feel empowered to have been able to take control of my health and own my body. I am walking proof that breasts do not define us as a woman, and this is something I strongly advocate through my girls every single day.
Through this process it has proven to me the strength of character of my incredible husband, he has stood beside me and seen me at my lowest and supported me through every step of my journey. My parents have financially and emotionally supported me through these decisions and a great group of friends and family have always been there. Through the last 12 years I have reached out to Pink Hope on many occasions and their support has also been fantastic.
A great deal of my big life decisions over the past ten years have focused around this positive test result. Some days I am in awe and grateful of how amazing it is that technology and science allow us to find out information, like your chance of developing cancer, but on the other hand it is something that is constantly on your mind. When you have to face your mortality, you begin to think differently and can also experience a level of anxiety.
I can finally see the light at the end of my BRCA1 journey and it feels like I can breathe again.