Research charity Breast Cancer Campaign has invested nearly £150,000 to enable a leading scientist from the University of Southampton, Dr Claire Foster, to develop an online “decision aid” tool to help younger women with breast cancer decide whether to undergo genetic testing.

Women diagnosed with breast cancer under the age of 40 are more likely to have inherited mutations in genes such as BRCA1, putting them at significantly increased risk of developing future cancers or having their cancer come back after treatment.

Genetic testing at the point of diagnosis can therefore identify those who are at high risk of developing further cancers, who could as a result be offered risk-reducing treatments such as a double mastectomy.

At present in the UK, genetic testing for women with breast cancer usually occurs following treatment, but genetic testing at diagnosis is now becoming more common.

However, facing the decision at diagnosis of whether to undergo genetic testing – a decision that could have a long-term impact – can cause significant anxiety and fear at an already difficult time.

Decision options surrounding genetic mutations were thrust into the spotlight last year after Angelina Jolie tested positive for the BRCA1 gene mutation, having already lost her mother to breast cancer, and elected to have a preventative double mastectomy to reduce her risk of developing breast cancer in the first instance.

Dr Claire Foster, based at the University of Southampton, is leading a two-year project to find the best ways to help young women who have been diagnosed with breast cancer by providing the information they need about the risks and benefits of genetic testing and enabling them to make an informed decision, judging the different possible outcomes against what matters most to them.

She will work with women with breast cancer, academics and health professionals to collect information and opinions on genetic testing, and later invite women with breast cancer to test the final decision aid.

Katherine Woods, Senior Research Communications Manager at Breast Cancer Campaign, said:

“A breast cancer diagnosis can be a traumatic experience affecting not only the patient but their family, friends and loved ones. Dr Foster’s research will help younger women with breast cancer to feel more comfortable making important decisions about genetic testing at what is already a very challenging time.

“Working alongside patients, clinicians and healthcare professionals, this project will help expand our understanding of the needs of people living with and beyond breast cancer. Dr Foster’s decision aid will help ensure that younger women are empowered to make decisions on genetic testing that could help save their lives, whilst hopefully reducing anxiety around the process.”

Claire Foster, Associate Professor and Director of Macmillan Survivorship Research Group at the University of Southampton, comments:

“I am delighted that Breast Cancer Campaign has funded this really important study. Having a diagnosis of breast cancer, especially at a young age, can be extremely hard to deal with. Add to this the option to have a genetic test at the time of diagnosis and it can be really hard to decide what to do.

“By working with a great team including social scientists, clinicians, geneticists and women living with the consequences of a breast cancer diagnosis this funding will allow us to begin to develop a much needed resource to support young women in the future to make such decisions.”

Over 1,100 women in Hampshire are diagnosed with breast cancer each year, on average, and sadly more than 250 women in the region die of the disease each year.

Source: Breast Cancer Campaign