I am Kirsty, married with two gorgeous children. When I was 38 years old and working as a research scientist, with links to breast biology and oncology, when my 33-year-old youngest sister, who lives in New Zealand, found a lump in her breast whilst in the UK for our middle sister’s wedding. On her return home, she was told she had a breast tumour (triple negative) and she postponed her wedding in order to have a mastectomy and chemotherapy. I suspected it was genetic, given her young age, and strongly encouraged her to ask to be tested for a genetic predisposition. Following some initial resistance in NZ, my sister persevered, and her blood test was sent off to Australia. In the meantime, I booked an appointment with my GP and asked for a referral to a breast clinic as I thought between my sister’s diagnosis and my maternal Aunt developing breast cancer at 40, I qualified to be classed as high risk for breast cancer, our middle sister did the same in West Yorkshire. I was sent to the Nightingale Centre at Wythenshawe hospital where I met Professor Tony Howell and we sketched out my family tree. He confirmed I was high risk and I had an immediate mammogram. I qualified for annual screening (mammograms and MRIs) whilst we awaited my sister’s blood test result. Months later the result came back showing she had a mutation in the breast cancer 1 (BRCA1) gene. This allowed me to be referred for genetic counselling and testing at St Mary’s Hospital where I discussed with my lovely, caring, genetic counsellor, Rhona, my 50% chance of inheriting the mutation and the preventative surgery I could have. After some initial counselling sessions, I was tested and found I also had the BRCA1 gene mutation, which meant I had a 60-90% chance of developing breast cancer and a 40-60% chance of developing ovarian cancer in my lifetime. In fact, of my two sisters and I, all who had a 50% chance each of inheriting the mutation, all three of us inherited it, which just seemed to be such bad luck. In the end, I was the last one to get the test results and I felt almost a relief when it came back positive, I would have felt guilty if I was the only one with a negative result, which just shows what strange feelings the process had thrown up. I knew without doubt that I wanted to have preventative surgery and so at age 39 I had my ovaries and fallopian tubes removed by keyhole surgery at St Mary’s. I was in and out in a day and had 2 weeks off work to recover. The following year, aged 40, I had a double mastectomy with immediate reconstruction with implants (6 weeks off work) at Wythenshawe Hospital. Both surgeries went well with no complications. I now take HRT to protect my bones until I reach 50.
I feel so very grateful to have discovered I have the mutation and to have been able to act on it, which means my risk factor for breast cancer is now less than that of the wider population. I want to thank genetic counselling and my surgeon at St Mary’s, the Nightingale Centre and my plastic surgeon, Mr Wilson at Wythenshawe hospital, and my wonderful supportive husband and family who have been there for me throughout it all. Most of all though, I want to thank the NHS, for providing a service for all, free at the point of contact, that has meant I have gone through this journey without once worrying about having to pay for anything. I hope that in the long run my surgeries have saved the NHS money since (fingers crossed) I will not now need oncology care. I wanted to become a Boobee to help Manchester to become the most breast aware city in the UK and specifically to help raise awareness about breast cancer risk and prevention. Oh, and in case you are wondering, my sister in NZ went on to have her own preventative surgery by having her other breast removed. She also got married and now has two beautiful children. My middle sister is aiming to have preventative surgery after she has finished her family.