This report distils the insights from a survey of the Inherited Cancers Australia community and proposes three recommendations to government so that organisations can continue to provide valuable information, advice and support for people at risk of hereditary cancer.

Hereditary cancer cuts across generations, casting a shadow over entire families and forcing multiple generations into the fight of their lives. When a hereditary cancer gene is identified, the individual risk of developing cancer increases dramatically compared to the rest of the population. For example, women with a breast cancer gene (BRCA) mutation have a 72 per cent lifetime risk of developing breast cancer, including more aggressive forms that are resistant to the best treatments available. 

People at increased risk, often need to make the difficult decision to engage in preventive measures that are costly and have life-changing effects. For example, prophylactic mastectomy reduces the risk of breast cancer by at least 95 per cent in women who have a BRCA gene mutation and strong family history of breast cancer. 

Recommendations

1. Develop a national prevention strategy and roadmap to reduce the impact of inherited cancer in the Australian community. 
2. Conduct a full economic analysis to understand the costeffectiveness of risk reduction interventions compared to the treatment of diagnosed cases. 
3. Provide ongoing funding to patient groups to deliver tailored, accurate information and support to those at risk of inherited cancer, including targeted outreach to Aboriginal and Torres Strait Islander people, CALD communities, and men.