Nicole

I am Nicole, wifey to my highschool sweetheart Nathan and mum of two,Teddy who is three and Harper who is 7 months old. 


Finding out whether or not I was a carrier of the BRCA gene was a fundamental part of my existence. My mother who was diagnosed with breast cancer two years ago is a BRCA gene carrier from her father who passed away at a young age from prostate cancer. Her mother also had breast cancer in her early thirties and passed away at the age of 42. My mother even though she had known for along time that she had the gene chose that she didn’t want to do anything about it, but cancer had other plans. Her hysterectomy came first due to findings in her ovaries and then the year after she got breast cancer. After diagnosis the plan was to have the mastectomy and take out the cancer. Due to the cancer being so severe and fierce my mother than had to go through a gruelling round of Chemotherapy and Radiotherapy. I remember her saying to me, “Please find out if you have this I don’t want you going through what my parents and I have experienced.” I then thought it was essential that I should find out.


I already had one child from
IVF, as I have suffered with endometriosis, polycystic ovaries, the inability to ovulate and an under active thyroid. I was desperately trying to get pregnant again but I thought if I am a BRCA gene carrier does that throw a spanner in the works. I had discussions with my IVF consultant to find out if I was a BRCA gene carrier would I be able to test my five remaining eggs. They advised that it was possible but if the egg was to have the gene mutation I would not be able to use that embryo. After weeks of deliberating I thought after five failed rounds of IVF and a miscarriage I just wanted my baby. I also felt torn as I naturally wouldn’t know if my first born Teddy was a carrier. I felt in this instance there was no ‘right’ or ‘wrong’ decision I could make and I wanted to go ahead to keep trying with the IVF. In the meantime I went for my blood test for the BRCA gene which came back positive that I was a BRCA 2 gene carrier.


My mind went into over drive and I was overcome with emotion but I also felt extremely privileged how much science has evolved and there is the option for me to have preventive survey, unlike my dear grandma. I now have my darling healthy baby girl Harper  and my plans to have my double mastectomy are in close proximity. My ovaries I don’t think just yet, I can’t make my mind up if I want any more sleepless nights  yet. I wanted to invite you in to share my journey along the way. 

Amy

My name is Amy, I’m 33 years old. I have a lovely husband called Matt and together we have two beautiful daughters, Grace (3 years old) and Darcey (7 months).I first heard of the BRCA gene when I was 29 years old. My cousin, on my father's side, who is a doctor, informed all of our family about the gene and the possibility that we could be affected. His mother (my lovely auntie) passed away at 56 years old on 24th September 2005, after a 10 year battle with both breast and ovarian cancer. She carried the BRCA2 gene mutation. My cousin explained that the BRCA mutation can be inherited from your mother or father, and if my father tested positive then myself and my brother would stand a 50% chance of also inheriting the mutation. In light of this, my father was tested and it was confirmed that he too is BRCA2 positive. At the time, I didn’t feel like I wanted to know whether or not I was affected. I felt safe in my bubble and continued to live my life, choosing not to know. The truth is I didn’t fully understand what having the gene meant and the associated risks. It wasn’t until after I’d had my daughter Grace, that my feelings changed. I now had a much greater sense of purpose and an overwhelming feeling of responsibility to be around for her as long as physically possible. In June 2017, whilst I was away on holiday with my family and our friends, I received the news that my test results were positive for the BRCA2 mutation. The predicted test results confirmed that I have an estimated lifetime breast cancer risk of between 45% and 85% and ovarian cancer risk, estimated between 10% and 30%. My heart sunk when I first found out and I felt more sad and guilty for my baby girl, as she too now stands a 50% chance of carrying the gene.Having had time to digest the news, I feel much more confident about my decision to undergo risk reducing breast and ovarian surgery. I am forever grateful for my auntie and her legacy, allowing me the opportunity to find out that I carry the gene and to be in a position to do something about it - KNOWLEDGE IS POWER! I'm hopeful that by the time my children are old enough to be tested, medical advances will mean they won’t need to make the same decisions that I am making. My family and friends have all been incredibly supportive and I’m very fortunate to have others (like Nicole) in my position to share this journey with.