Sarah has the BRCA gene mutation and was diagnosed with ovarian cancer in her thirties, after having had a mastectomy. Sarah tells us her story.
Mum was 52 years old when she died of breast cancer –20 years after getting the all clear from the first time she was diagnosed.
Then when my cousin died of breast cancer at just 22 years old, we pushed for mum’s blood to be tested (she’d donated some of her blood before passing away for research). We found out that she carried the BRCA gene mutation – the gene which meant that cancer was in our family.
Deciding to have a mastectomy
So, that left me with a decision to make. I was 32 years old, and on my own with two young girls. I was told the risk of me getting breast cancer was high, but I was told very little about ovarian cancer. It made more sense to me - with breast cancer so predominant in my family – that I have a mastectomy and immediately reduce my risk of getting breast cancer.
I had a double mastectomy but it wasn’t a smooth operation. My aunt, my mum’s sister, was a godsend as I fell really ill with MRSA, which resulted in 18 months of infection. At one point they had to remove the implant from my left side, which left me with nothing there. It was traumatising.
After that, the last thing on my mind was thinking of having my ovaries out. The risk of ovarian cancer not really having been explained to me, I put it to the back of my mind.
Taking part in a clinical trial
When I turned 35, I qualified to take part in a clinical trial. It looked into finding out whether screening women at high risk of ovarian cancer can pick up the disease at an early stage, when treatment is likely to be more successful. I had my blood tested for CA125 every four months – a test that could give an early warning sign for ovarian cancer.
After just a year, my CA125 started to come back high. However, because I was so young, doctors ruled out ovarian cancer even though I was BRCA positive. Later, further investigation found cysts on my ovaries, but they still weren’t overly worried about it, and said they’d simply keep an eye on me. In the meantime, my CA125 was still rising.
Raising awareness of the risks
Finally, some 18 months later, I had keyhole surgery to have one of the cysts removed. Results came back – I had ovarian cancer, and it had already spread to my bowel.
Now, I’m doing as much as I can to make people aware of the risks of having a family history of breast and/or ovarian cancer. When you know the risk, you’re empowered to take the choices available to reduce that risk. It’s not about scaring people – it’s about giving them the chance to be realistic.
Currently, three quarters of women are diagnosed once ovarian cancer has already spread, making treatment complex and difficult. There is an urgent need for progress. Please share this story with your friends or help support Ovarian Cancer Awareness Month by fundraising.