After losing her mother to ovarian cancer in 2013, Sarah was determined to raise awareness and help other women with the disease. Here she talks about the loss of her mother, the BRCA gene and why she’s opted for preventative surgery…
I’m one of two girls – my sister doesn’t have a mutation in the BRCA gene, but I do.
My mum first got sick in late 2010. A few years later, after I became a Target Ovarian Cancer awareness ambassador, I realised that her constant backache would have been associated with ovarian cancer, but at the time, the main thing she had was bloating and a feeling of not being quite right. She was fine in the September and then she was ill from November up until December. She argued with the doctor to go for a scan and in the January they told her she had a tumour. Then there was 6 weeks of this multi-disciplinary team that couldn’t make their minds up about what was the matter with her – it was horrendous.
It’s funny really – I just had this feeling about what they were going to say the night before her appointment. It’s your worst nightmare. The day she went to see the consultant they ended up keeping her in to drain her stomach. It just never really ended after that.
A family history
At that time, we were completely oblivious about ovarian cancer and its symptoms. It was only when we got the diagnosis that we started talking to other family members and discovered that my mum’s first cousin in America was just coming out the other end of ovarian cancer. Her daughter had also been diagnosed with breast cancer at 42.
We spoke to the genetics team at the hospital and discovered we carried the mutation in our BRCA gene. Out of my mum’s six sisters, four of them had the mutation. One had preventative surgery (removing the ovaries and fallopian tubes) but died because she got an infection after the surgery. One aunt had already had a hysterectomy but they had left the fallopian tubes so she had these removed by key hole surgery and my other aunty in Canada also had a hysterectomy and a mastectomy.
To be honest, even before I had the test I sort of knew that I’d have the gene mutation. Me and my mum had already had that conversation. I was lucky enough to still have mum with me at the time and was able to talk to her about it all. In her opinion it wasn’t a matter of if you have preventative surgery but when! I just parked it because I was going through so much other stuff.
Making a decision
Mum died in February 2013 and for a while I just left the whole idea of preventative surgery. Then, last year a family friend also died of ovarian cancer. She was 64, my mum was 63. I just remember thinking, ‘that’s not that far away’. I’ve also got a daughter to think about. Surgery is a choice but it’s also not a choice - I’ve watched two people I love dearly die of this disease.
I think I’ve been through a process over the last couple of years – because you do have to process it – of coming to terms with not having any more children. I’m 41, I’ve got a six-year-old daughter, I run my own business and I’m doing a PhD. Even if I did meet someone new I’m not going to want a baby at 45. I think you just accept that it’s not going to happen. And when you compare that with the chances that I will get ovarian cancer one day – well, it makes you become a bit more pragmatic about surgery. That’s still a process that takes quite a while to go through though.
Before surgery, I thought the hardest part would be not having my mum there with me when I had the operation. It’s like when you’re sick as a little girl and you want your mum there with you. The thing is, I know that if I have surgery before I start the menopause it reduces my risk even more. Plus, having my ovaries and fallopian tubes removed also reduces my risk of getting breast cancer. If I start HRT there will be risks, but there’s always going to be risks. I tried HRT but have turned to alternative natural remedies that appear to be working for me. I sometimes wondered if I had the surgery too early in my life but when I hear again and again about another Jewish women diagnosed with ovarian cancer and they are unaware of the BRCA gene fault – I just know I made the right decision.
Genetic testing for women with a family history is so important. I don’t lead a very Jewish life, I am very traditional and spiritual, but I actually I think it is really important for Ashkenazi women with a history to get tested. You think that something is not going to get you – but this could. Medical science has shown it and proved it.
I think these days I’m more vocal about things. I’m part of a group that my mum set up and we do events to help raise awareness and fundraise for research. We campaign within the Jewish communities across the North West and via the women through the synagogues. I also want to encourage younger women with a family history to take the risks seriously. It’s not like where we’re at with breast cancer and screening and early detection. Because it’s often diagnosed so late, the treatment for ovarian cancer doesn’t have the same effect. Even if they’d diagnosed my mum within those first six months it wouldn’t have made any difference – it had already been there for ages. Early diagnosis can surely make a difference.
I promised mum before she died that I’d get her story out. My mum would have spoken up about anything – she always would have been the first to do it. The last time she walked into Christies hospital she had my dad carrying a hundred blankets she’d had knitted by a knitting group she’d set up. She was such a kind, caring, thoughtful person. I always used to say if there was an issue she’d set up a group. She was a councillor and set up the volunteering for the Manchester Jewish community. And as a mum, no matter what you did she always stood by you. The worst part of mum’s diagnosis is living without her.
- Find out about familial ovarian cancer, including risk factors, treatment and prevention
- Start Making Noise for Ovarian Cancer Awareness Month