News & Stories

Participating in the Breast Cancer Now Generations Study was an easy decision. Having a family history of breast cancer and testing positive for the BRCA2 gene mutation myself, taking part in the study was a way for me to directly contribute to research into the causes of breast cancer. It has also provided further reassurance that lifestyle factors can play a huge role in your risk of all cancers, not just breast cancer, as well as general health, and these factors are something that are within my control to a large extent.

I started working for the NHS as a hospital medical secretary when I left school. I’ve long been fascinated by wildlife in general as well as African wildlife. I travelled to South Africa for the first time in 2005 to volunteer at a wildlife rehabilitation centre and the country, its people and wildlife got under my skin and into my heart! Several return trips later, I met my partner in 2009 while on a volunteer placement working with local and Bushman communities in the Kalahari. The rest as they say, is history! We lived in South Africa for seven years before my partner’s work took us to Perth, Western Australia, where I worked remotely as a medical secretary for oncology units across the country. We later moved back to my homeland of Scotland where I spent six years working for a GP practice. For the last 18 months we’ve been travelling around Southern Africa in our Landcruiser called Gloria - named after Gloria the hippo in the movie Madagascar who is also big, grey, chunky and beautiful! I have a younger brother and two nephews, and three grown up stepsons and two granddaughters. I love all wildlife but have a huge soft spot for dogs, and I also enjoy music and reading.

One of the NHS consultants I worked for in gynaecology was involved in a joint clinic with the NHS Genetics Service for women with ovarian and/or breast cancer or a family history. This was where I first heard of a possible genetic link. My maternal grandmother died of breast cancer and grandfather of prostate cancer. My mum herself was diagnosed with breast cancer at the age of 35 but is thankfully still going strong today at age 76! Following a brief chat with that consultant about our family history, she advised me to seek a referral to the NHS Genetics Service which I did. I was in my early 20s at that point and was advised to have annual screening with mammograms/examination at the Breast Clinic.

Fast forward to 2010, aged 37, I was re-referred to the NHS Genetics Service to review our genetic history and get advice regarding ongoing screening. At that point it was felt that our family history did not meet the criteria for NHS testing for mutations in BRCA1 and BRCA2 genes. However, having had breast cancer herself, my mum was asked if she’d like to take part in a local study looking at both BRCA genes as well as other genes possibly involved in the development of breast cancer. She accepted and in 2011 we were informed that she was positive for BRCA2. Mum’s positive result meant that I was now eligible for NHS testing which I was offered and did in 2011. Later that year I was also found to have the BRCA2 gene mutation. I was advised to have my ovaries removed before the age of 40 and to consider either long-term breast screening with regular MRI and mammography or preventative breast surgery. Ultimately in 2012 at the age of 38, I chose to undergo a total abdominal hysterectomy and bilateral salpingo-oophorectomy as well as bilateral prophylactic mastectomy with reconstruction and implants - these surgeries were done in South Africa where we were living at the time.

I genuinely have no regrets about being tested or the choices I’ve made with regard to surgery versus screening. Having my granny die from breast cancer in her early 60s and just months later, my own mum diagnosed with the same disease when I was around age 11, I think to some extent I grew up feeling that my breasts could perhaps become problematic. Thanks to mum being brave enough to take part in a local study, I was ultimately able to be tested myself. My personality is such that I don’t like “what ifs” and would rather know my genetic status. I know my mum has felt guilt about my positive result but the BRCA2 mutation didn’t start with her. We will never know exactly where in the family it came from and any samples remaining from my grandparents are no longer available/suitable for testing. That’s okay though, it’s what we know now that’s important, and for me that knowledge is power.

The way I see it, I’ve done everything possible surgically, based on the recommendations I received at the time, to try and minimise my risks. I also try where I can (and I’m by no means perfect!) to look after my health - have never smoked, don’t drink a lot, try to have a healthy diet and do some exercise, etc. That’s all I can do and I’m okay with that.

Deciding whether to be tested and, if you go ahead and get a positive result, deciding to opt for screening or definitive surgery if advised/available, are very personal decisions. I’ve had several people say to me that they don’t understand people who get tested as they’d rather not know. Others have questioned why I would have surgery when my body was otherwise healthy. Why not just opt for screening? These are all valid opinions however I felt that I couldn’t cope with the constant rollercoaster of regular screening and the worry about what if “this time” something shows up. It’s now 13 years since my surgery and I still feel I did the right thing for me. At 52 years of age now, I’ve had 17 cancer-free years that my mum didn’t have. Whether or not that’s a direct result of my choice to have surgery I’ll never know, I just consider myself very fortunate to have had them and hope for many more to come. My advice to anyone facing these huge and complicated decisions is, take as much time as you need to think about the information you’ve been given as there are pros and cons for each option, ask questions - however many it takes - and then do what’s best for you.