What Hereditary Cancer Awareness Week means for the future of women

Ovarian Cancer Action introduced Hereditary Cancer Awareness Week to the UK in 2020. Here Jo Stanford, Special Projects Manager, explains what the week means to her. 

Over Hereditary Cancer Awareness Week we have heard stories from people in many situations who have discovered their high risk in different ways, encountered different challenges and choices along the way.

I hope what has come across is the possibility and opportunity that genetic testing gives us.

This may sound an odd statement considering the devastating impact these gene faults have, but as a BRCA carrier myself, I am both grateful for the knowledge that genetic testing has given me, whilst also wishing my family’s journey had started at a different time.

My mum was diagnosed with ovarian cancer just after the start of the new millennium, having followed the common path of visiting her GP many, many times with symptoms of the disease. Until this point, she knew little of her family history, but close to the end of her life she mapped her family tree and found there were cases of breast and ovarian cancer ripping through generations. She died a few months after consenting to genetic testing, and we later found out she did indeed carry a faulty BRCA gene.

The question in my mind has always been “if only”?

If there was more awareness earlier, could she have looked into the family tree, had genetic testing, had her ovaries removed and never had to have cancer? Could she have met my children?

This is what we hope for families today. By raising awareness of these risks and the opportunities for how to reduce the chances of developing ovarian cancer, we hope that fewer families have to ever learn the pain of losing a loved one to this disease. I hope many of you get to live my “if only”.

Genetic testing is opening up to more and more people, through projects such as the NHS England Jewish BRCA programme. As more people discover their risks, it’s important they have information about what happens next and I’m pleased Ovarian Cancer Action can help provide that.

Learning you have a high risk of cancer is scary- in some ways it fills your life with uncertainty about the possibilities of the future. But it also gives the opportunity to take some control back.

I’ve been able to do that by having genetic testing myself, having a risk-reducing mastectomy and having my ovaries removed. These are hard, life-changing choices but ones that mean my story will (hopefully) be very different to the women in my family who went before me.

As a family we have fundraised for Ovarian Cancer Action in several different ways. We believe that the research being done now will change things for the future, and seeing my mum’s name on the Tribute Wall, alongside so many others, always reminds me of why this work is so important. I firmly believe that the choices we are faced with will be very different in the next generation, I can’t wait to see it all unfold.