BRCA sisters by chance and best friends by choice

Hi, we are Amy and Nicole – BRCA Sisters. We have been best friends for years with an extremely close bond, we believe there is something extraordinary that we are now bound together by being BRCA gene carriers. To have someone by your side throughout this testing time is literally gold to both of us and we couldn’t have asked for a better partner in crime. We hold each other’s hands every step of the way.

Amy

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 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 sank 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 am hopeful by the time my children are old enough to be tested, medical advances will have changed so they don’t need to make the same decisions I am making. My friends and family have all been extremely supportive along the way, and it’s been great to have (Nicole by my side.)

Nicole

Hi, I am Nicole, wifey to my high school sweetheart Nathan and mum of two, Teddy who is three, & 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 a long 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 her diagnosis, the plan was to have a double mastectomy which would ultimately remove all of the cancer. Due to the cancer being so severe and fierce my mother then had to go through a grueling round of chemotherapy and radiotherapy. I remember her saying to me, my younger brother and sister, “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 from 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 me 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 firstborn 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 overdrive and I was overcome with emotion but I also felt extremely privileged how much science had evolved and that there is the option for me to have preventative surgery, 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 to say goodbye to those sleepless nights yet.

I wanted to invite you to share my journey along the way. Thanks so much, Nicole x