Earlier this week research conducted by #TeamEve put a spotlight on hereditary cancers which demonstrated a wide knowledge gap in awareness of BRCA gene mutations and where to find information about hereditary cancers such as breast and ovarian cancer as well as questions about whether genetic testing is appropriate and how to access it.
The research demonstrated that nearly two-thirds of women had not heard of BRCA gene mutations (63%) – which can significantly increase a woman’s lifetime risk of developing breast and/or ovarian cancer. Awareness of another genetic mutation – Lynch Syndrome – which can cause an increased risk of a number of cancers including ovarian, womb and bowel cancer was barely recognised – being identified by just 4% of survey respondents.
Over half (52%) of women agreed that they did not know where to find information about genetic testing, a key component in identifying whether an individual or other immediate members of their family are at increased risk of developing these cancers.
Whilst the most common place for women to find information or advice about heredity women-specific cancers and genetic testing was a GP or healthcare professional – with over three-quarters (76%) suggesting this would be their most popular port of call for this type of information. The survey also revealed that women would go to a dedicated online resource such as NHS Choices (59%), use a search engine (42%) to seek information or advice on women-specific cancers / genetic testing or visit a specialist women’s cancer charity (41%).
Dr Angela George, Consultant in Oncogenetics and Medical Oncologist at The Royal Marsden Hospital, said: “Identifying individuals with a BRCA mutation is vital, as it can have such a profound effect on their cancer management, as well as providing valuable information for the family so that others have the opportunity to prevent cancer in future. It is therefore very disappointing to see that there is still such a gap in understanding and awareness of these genes, even in higher risk populations. It is vital that there is high quality information about these genes and their relevance for women, so that those who would benefit from testing are aware of this and can ensure it is undertaken.”
That is why #TeamEve launched a dedicated information resource – Hereditary Cancer Matters earlier this week to help address the issue. This will provide specialist, evidence-based information to the general public, who may have either recently been told they’re at high-risk of carrying a gene mutation, or are considering genetic testing or the options of preventative surgery or screening – whilst also offering up-to-date information for healthcare professionals including GPs who this research shows are often the first port of call for information.
Dr Ellie Cannon, a practising GP and media doctor welcomed the information resource: “As GPs we’re often asked about genetic mutations and what this could mean for a patients’ immediate and long-term health. Understanding that you can’t inherit cancer but you can inherit a higher risk of developing cancer and there are things that you can do reduce your risk is a vital and life-saving message. What’s especially useful about this new information resource is that it doesn’t just cover one cancer or gene mutation, but all the women-specific cancers and their hereditary risks.”
Head of BRCA support network, BRCA Umbrella Caroline Presho, commenting on the need for access to reliable information, said: “Being BRCA positive isn’t a life sentence. Whilst you may have been told life-changing news – by giving women the gift of knowledge and the ability to make informed decisions about their future through a dedicated resource, it can make a huge difference in their journey. My advice to women is that knowledge is power.”
In the general UK population approximately 1 in 400 people carry a BRCA gene mutation – which puts them at increased risk of both breast and ovarian cancer – yet this figure for the general population is low when compared with the 1 in 40 people who carry a mutation in high-risk communities such as those of Ashkenazi Jewish descent.
Athena Lamnisos, CEO of The Eve Appeal, said: ‘When women are diagnosed with cancer they often ask questions about what caused it. With women’s cancers, there’s a level of understanding that there can be an inherited risk and an increasingly common question is ‘do I have the Angelina Jolie gene?’ We hope that this information resource will answer all the key questions and equip women with the information that they need to seek further advice and go on to make decisions about their health.’
To find out more information about hereditary cancers; please visit our dedicated information resource Hereditary Cancer Matters.