Kara Tointon: Why I had a double mastectomy at 39
Last year I made one of the biggest decisions of my life. I chose to have a double mastectomy and have my fallopian tubes removed. I didn't have cancer, but my decision was driven by it.
Six years ago, my mother, Carol, underwent chemotherapy for ovarian cancer. During that time, she was tested for the BRCA1 and 2 gene alterations, which put you at greater risk of breast and ovarian cancers, because we know they run in our family. It was suggested that my sister, Hannah, and I also take a test. We did so in our own time, when we felt ready.
My result came back positive. Hannah's, thankfully, came back negative. She had convinced herself that we would enter the process together and so it took a moment for her to be able to talk about it, but she has been a rock for me and has been with me every step of the way.
Finding out about the gene alteration gave us all a clarity and an explanation of the generations of women we'd lost in my family, all too early, to cancer. My mum had lost her mother to cancer at the age of 13. In 2002, my Auntie June died lost a ten-year battle to both ovarian and breast cancer and in 2019, two and a half years after her initial diagnosis and three months after my first son, Frey, was born, cancer claimed Mum's life too.
For the next five years after my test I was put under 'surveillance' — I had mammograms and MRIs once per year. Doctors had told me about the option of having a mastectomy when I first took the BRCA alteration test in 2018, but I was hoping to have a second child before I went through any major surgery.
The first scan showed a benign lump. When tested, this wasn't cancerous, but the risk suddenly felt a lot more real. When these lumps showed up again in a few more scans, it was enough to convince me that I wanted the double mastectomy.
The process was surprisingly straightforward. After attending various meetings where everything was explained to me, I waited for the date of surgery. In April last year, I went into the Royal Marsden hospital for one night and returned home the next day with drainage tubes, two mesh layers under my skin where my breasts used to be, and implants underneath. The procedure usually takes up to three hours. My surgeon told me that, although some patients' are able to use fat from their abdomen and buttocks to reconstruct, this wasn't an option for me at this time, hence us choosing implants.
Within a few weeks I was up and about; within two months I was able to lift things. The operation did take a mental toll — I found myself surprisingly tired for about three months, but to a certain extent that was overridden by the overwhelming sense of relief. I still have some procedures to complete but I'm very happy with the results and the decision I've made.
Five months later, when I had just turned 40, I had a second surgery to remove my fallopian tubes, which reduced my risk of ovarian cancer without me needing to go into an early menopause. When I am closer to a natural menopause, I will have my ovaries removed to further reduce my risk. The procedure and my recovery was relatively quick, and again I only spent one night in hospital.
One of the biggest fears people have around this type of surgery is the physical scars it leaves and, while I do have those, I don't worry about them. How you look becomes far less of a concern when you've seen your body heal from two potentially life-saving operations.
I now live a peaceful life in Sogne, southern Norway, with my partner, Marius, and our two sons, but I hope I can use my experience to spread awareness of the tests and operations that can help defend against breast and ovarian cancer.
Many people are afraid to speak about cancer; Mum certainly was. My childhood growing up in the picturesque Westcliff-on-Sea in Essex was joyful and I'm lucky to have such a close family, but there was one thing Mum would never speak about: her health. For me, speaking about my procedures with other women and hearing their stories makes me feel less alone.
That's why I decided to share my experience on Instagram last month. I'd seen a video on my feed of somebody else sharing theirs and it gave me such comfort. At first I felt nervous posting something so personal, but the kind messages I received from other women, many of them going through the same thing, really moved me.
Having the BRCA alteration test and preventive surgery is a personal decision and one with many different considerations, but it was the right one for me. I was able to take back some autonomy — cancer once dominated my family but I feel like I am no longer controlled by it.
I will always grieve that more treatment options were not available to my mum, but I know that she would want me to give other women a message: don't ignore your body; confronting your health head-on could save your life.
Kara is an ambassador for The Eve Appeal — the leading gynaecological cancers charity, which funds research and raises awareness for the prevention and earlier diagnosis of all gynae cancers. You can find information on BRCA gene alterations, genetic testing and preventive options at eveappeal.org.uk
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