Angelina Jolie was extremely brave to write about her decision to have a double mastectomy this week in the New York Times. Whether you’re famous or not, it’s a hugely courageous thing to share.
A couple of years ago I met another woman who had also chosen to have a double mastectomy. I thought it worth posting the story she told me back then.
As anyone with a good grounding in genetics will know, our futures are mapped out for us in our basic make-up by the DNA in our cells, which dictates not just what we look like but whether we develop diseases later in life. Research has now shown that, for some, the chance of developing breast cancer is already written in their genetic make-up – five to ten per cent of breast cancer patients carry an inherited faulty BRCA gene.
Emma Parlons, a successful PR marketing consultant living in north London with her husband and two children, discovered she had inherited a faulty gene that could lead to breast cancer. ‘My first cousin Jo went to the doctor with a lump in her breast which turned out to be cancerous,’ she remembers. ‘My mother called me and said, “Jo’s found out her cancer is linked to a gene called BRCA1. Your cousins are getting tested for it. Do you want to be?”’
Emma already knew cancer ran in her family. As well as her first cousin, three of her great aunts had had either breast or ovarian cancer, and one of their granddaughters, Emma’s second cousin, had breast cancer in her early thirties, giving Emma a family history that was significant enough to put her at risk of developing the disease too. A healthy BRCA1 gene helps repair damaged DNA, but if you inherit a mutated version of it, damaged DNA within cells is not properly repaired, increasing the risk that cancer will develop as the cells divide and multiply.
‘They’re very thorough in the NHS and talked me through everything, asking me what I would do with the information if I tested positive for the gene,’ says Emma. ‘I ran away from the whole thing for a couple of months. Then I realised that if I knew, I would be able to do something about it, so I went back and got my blood tested.’
When the results came back, she was confronted with an uncomfortable truth – she had the BRCA1 gene mutation. ‘I was told in no uncertain terms I had an 85 per cent chance of getting breast cancer and a 40 per cent chance of getting ovarian cancer.’
The first step was to discover whether she already had cancer. Emma had an MRI scan and a mammogram to find out. ‘It’s very emotional going through the screening. You tell yourself that you do have cancer so you can cope.’
She was faced with an incredibly difficult choice: she could live with the knowledge that at some point in the future, she could develop breast or ovarian cancer; or she could have both her breasts and her ovaries removed and vastly reduce the possibility of developing the disease. Presented with the truth of this grim reality, Emma and her family faced one of the toughest decisions of their lives.
The first thing to do was to explore every eventuality. ‘I was told I could be regularly screened and that they could try and catch any cancer early if I didn’t want the operation,’ she says. ‘One surgeon told me about a patient he’d seen who’d found out she had the BRCA1 gene mutation when she was my age, 37, and that she’d only just developed cancer, ten years later.’
The choice was hers to make. ‘I didn’t want to live my life waiting for the day I found out I had cancer. My husband asked me what advice I would give to our daughter. “I would tell her to get it done straight away,” I replied. If I wanted to see my children get married – if I wanted to live – then I had to have the operation.’
Once the decision was made, Emma felt the hardest part of her journey was over. She went with her mother to seek out the advice of a number of surgeons to find out what her options were for the surgery, and started all the preparation for the operation, including a psychological assessment.
Before the operation, she also had advice from the staff at the Royal Marsden Hospital on how to explain to her children what was happening. They were old enough to understand something was going on, and it was essential to Emma and her husband that their needs were looked after during the process.
For Emma, there was one other condition of the surgery. ‘I mentally geared myself up for the operation,’ she says, ‘but I needed the surgery to leave me exactly as I was before. I could do it, but only if I still had boobs.’
At the start of 2010, Emma had a double mastectomy with immediate reconstructive surgery. ‘All the flesh from my breasts was cut away, all the way back to the chest bone. I had told my surgeon, Mr Gui, that I didn’t want to wake up flat-chested. He reconstructed both my breasts in the same surgery, not letting me out of the operating theatre until he was satisfied they were right. I woke up with boobs and he had managed to keep my nipples. It was amazing – no one would know the difference.’
A year after her first operation, Emma underwent surgery to have her ovaries removed. Having an oophorectomy causes early onset of the menopause, and the operation would have implications for Emma should she want to have more children.
‘My husband and I had already decided our two children were enough, and it wasn’t traumatic at all,’ she says calmly. ‘Medically there’s lots of things doctors are able to do so, to be honest, I didn’t mind going into the menopause early. I knew I’d be able to continue to live a normal life without experiencing the usual side effects of the menopause, like hot flushes.’
Today, following the double surgery, Emma’s odds of developing breast cancer have dropped dramatically – she now has only a four per cent chance of getting the disease. ‘When I woke up, I felt amazing, and it wasn’t just the after-effects of the anaesthetic. It was over and I had saved my life. I felt very lucky.’
Last year, Emma shared her story at a lunchtime fundraising event, during which £89,000 was raised in support of research being conducted into the BRCA1 gene by Breast Cancer Campaign researcher Dr Jo Morris. Since then, Emma has been determined to continue her fundraising efforts to support further breast cancer research.
‘We’ve got a six-and-a-half-year-old daughter, so it’s massively important to us that we do something. All this information is there in our genetic make-up, and we’re just starting to learn about it. We want to support Dr Morris’ research so that, by the time my daughter takes the test, she will have more options.’
‘The women who have cancer are amazing – I am just lucky. Someone told me I was going to get run over by a bus, and I was able to move out of the way. I’ve been given this opportunity to carry on living, and now I want to do everything I can to help further the research, so that I feel like I’ve done something to make a difference for other women like me.’