I remember the day when I answered the phone and received the news that I carry the BRCA 1 gene mutation. It is a really clear memory for me. I was midway through marking my Year 5’s reading comprehensions. Hearing that I had tested positive, somehow felt as though I’d been told that I had cancer. I didn’t know quite what to think or how to feel. What I was sure about though was that I couldn’t wait until I was 30 to start screening my breasts; I needed to do something proactive straight away. So I took control. I started to have my breasts screened every six months and my ovaries and CA 125 level checked once a year. I only ended up having this check of my ovaries once before I was diagnosed with ‘Cyril.’ Below is a photograph of my siblings and I. I am the the only who inherited the BRCA 1 mutation.
I never ever imagined that I would be diagnosed with ovarian cancer at 27, because all the statistics indicated that, even with the BRCA mutation, the risk of ovarian cancer only increases later on in a woman’s life, usually past the age of 40. I think this was part of the reason why I held a lot of anger towards my body when I was diagnosed. I let go of some of this anger when I discovered that the BRCA 1 mutation would actually be one of the things to help me fight ‘Cyril.’ When I was diagnosed, my oncologist told me that patients with a BRCA 1 mutation are often more sensitive to platinum-based chemotherapy.
Throughout my journey with ‘Cyril’ so far, one of the most important things to me has been raising awareness of BRCA, the testing process and the chance to take preventative measures. After the initial shock, learning that I carried the BRCA mutation for me very much felt like I was in control and that ‘knowledge is power’. In keeping with this idea, I wanted to share an article that I read a few weeks ago in The Jewish News.
The article was about The Venus Project – a photo exhibition that is a joint collaboration between BRACHA (an Israeli charity focused on raising awareness about Hereditary Breast and Ovarian Cancers), British artist David Scheinmann and London based curator Tamar Arnon. The exhibition aims to raise awareness of hereditary breast and ovarian cancer, BRCA testing and the ways to reduce the risk of these hereditary cancers. I have included a description of the exhibition below:
“The exhibition shows 20-30 photographs of different sizes, two video installations and a book featuring healthy BRCA mutation carriers, previvors – healthy carriers who underwent risk reducing surgeries, young breast cancer survivors, a man who is a BRCA mutation carrier and two women with ovarian cancer – one of them, Sigal, has sadly passed away 6 months ago.”
The exhibition is a really unique and beautiful way to remind BRCA mutation carriers that ‘knowledge is power.’ I’ve put a few images below taken from the Scheinmann’s website:
To see more images from the exhibition have a look at the the artist’s website:
http://www.davidscheinmann.com/photo/works/Pages/The_Venus_Project.html.
Reading this article led me to want to find out more about what the Royal Marsden has does within the field of BRCA testing (I had my testing done over a year ago and through another genetics service).
The Royal Marsden have developed a pathway that aims to ensure that more breast and ovarian cancer patients are able to get BRCA genetic testing at the Royal Marsden, rather than needing to be referred to a separate clinic for this. Increased access to testing also means that family members who may have inherited the genetic mutation can then also get tested and have the chance to make choices about their bodies.
The Royal Marsden Translational Genetics Laboratory has also been a crucial development within the field of genetic cancers. It allows cancer patients to have access to the latest genetic testing, providing greater understanding about their cancer and therefore allowing for more individualised treatment plans. Genetic testing remains restricted due to cost and the resources needed, so at present, the focus is on breast and ovarian cancer patients because of the known high prevalence of causal genes (i.e. BRCA), which can determine effective treatment. However, the eventual aim of this work is for all patients at The Royal Marsden to receive a genetic test as part of their diagnosis. A significant part of the funding for the laboratory came from supporters of The Royal Marsden Cancer Charity.
Knowing about BRCA mutations means that that more and more people can then make choices about their bodies and health, for example with the options of surveillance or risk reducing surgery. For me, knowing more about all the pioneering work that is going on at the Royal Marsden adds another layer of importance to those images from the Venus Project exhibition. The images of the BRCA carriers showing scars following cancer surgery is such a poignant reminder of how important it can be to know about your BRCA status at the stage of diagnosis. Equally, the images of previvors (healthy carriers who underwent risk reducing surgeries), are also a reminder about how, thanks to pioneering research, more and more women are having the chance to take control of their health and make decisions about their body before cancer does.
On my cancer journey so far, I’ve had to come to accept that unfortunately ‘Cyril’ was probably always going to be part of my destiny. However, I feel so very grateful that I was already aware of my BRCA status when I was diagnosed. It meant that in some way I was able to hold onto a tiny thread of control in what was a very ‘out of my control’ situation. It also meant that my team had the best understanding they could about my cancer and that my treatment plan was made with this in mind. I feel so proud to know that centres such as The Royal Marsden and others across the world are working hard to ensure that genetic cancer research is on-going and that more and more individuals can have the chance to be ‘previvors’.
Details about The Venus Project Exhibition:
The Venus project will travel to the UK and the US from the end of this year. I will update the blog with more details as they are published.
Finding Cyril 