My name is Libby and this is my story.
Today I am taking charge of the fear and worry of developing breast cancer and instead choosing preventative surgery to ensure I am here in the future for my family.
These are the words I chose when I told my friends and family the empowering choice I had made to have a prophylactic bilateral mastectomy.
I have always been aware of my high risk to breast cancer with many female family members on both sides affected. I had ultrasounds from a young age and genetic counselling, which interestingly changed advice over time due to newer research (male family members with prostate cancer are now considered as a possible signal for high risk, along with the understanding now that your father’s genetic history is just as important as your mothers).
It was my GP that started the conversation about preventative surgery, and at first I thought it were too radical. I looked into genetic testing and they decided that my Dad qualified for free testing but Mum not (even though she and many others had had cancer). Whilst I began the long wait for the results I started to research into the idea of surgery. After speaking to my local Breast Clinic they assessed my potential risk of getting breast cancer (regardless of BRCA testing) as 72%. My results had also been elevated by having to have IVF for my first son.
The percentage came at a shock and even with always being proactive of my checks, I started to think about the ‘what ifs’…I could wait and see if the ‘big C’ got me and then react but then would I be successful in getting it all, would it come back and would I be able to forgive myself for not doing something about it prior to getting cancer. I decided to do things on my terms; go through surgery when I was young (35), healthy and even in holiday time to not interfere with the impact on work. I didn’t want to feel the worry any longer or feel that I was waiting for cancer to get me.
In my process of making the decision and then preparing for surgery, I found Pink Hope. I couldn’t believe my GP and Breast Clinic didn’t know of them (they do now!). The online support of other women facing the decision and process of surgery has been the most helpful of all information out there. Hearing of similar stories or hearing how people felt or coped with the ups and downs. I remember reading about how a lot of women felt like their surgery couldn’t come quick enough or that they felt instantly relieved after the surgery. I had to admit I was worried I wouldn’t feel like this and went through a period of time three months before surgery feeling quite anxious. I used my work’s free counselling service and spoke to a psychologist about how I was feeling. She gave me great reassurance I was doing the right thing for me, not by telling me to do or not do the surgery but by listening and asking me one powerful question “how would you feel if you didn’t have the surgery?”, my answer…continued worry and fear of cancer and regret if anything happened.
After that my mindset changed, I felt empowered, determined and ready for surgery. My surgeon was a fabulous support and has a knack of making you feel at ease! The day of the surgery went smoothly and after getting to the ward I felt an immediate sense of relief for the lack of worry. The second day was a little tougher as the pain relief wore off and the tight bandaging was uncomfortable, but that was the only low point. I grew stronger in body and spirit each day, and that was especially helped by daily visits from my amazingly supportive hubby, parents and two young boys (two and three at the time).
Dad received his BRCA results a week after my surgery – negative. I was still immensely happy with my decision for surgery as my breast cancer risk was still high regardless of BRCA. The counsellor and medical team always made me aware that BRCA testing, although great, still only accounts for two of the thousands of genes we have and many unknown links to family cancer.
I have always been open and honest with the big medical issues in my life as I believe we have far too many taboo subjects that need to be broken. Like my struggles with IVF, I decided to be open and let my friends and family know of my decision for surgery, more as a way to raise awareness for knowing your risk and being empowered. The support has been amazing and definitely helps in the recovery process.
Three and a half years on, life is ‘normal’ with the busyness of working and Mum duties. I don’t have to think about yearly checks and mammograms again and the thoughts of worry have completely gone.