Breaking the cycle: Insights from the Inherited Cancers Australia community
September 2024
Breaking the cycle: Insights from the Inherited Cancers Australia community
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. 1,2,3
Taking action – prevention is better than diagnosis
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. 4
In order to understand better the needs of those they serve, Inherited Cancers Australia partnered with Evohealth to design and distribute a survey to their community. With responses from across Australia, including regional and remote areas, the insights are invaluable.
3 out of 4 people access Inherited Cancers Australia to seek information to reduce their risk of cancer.
Our report ‘Breaking the cycle” distils the insights from this survey and proposes three recommendations to government so that organisations, such as Inherited Cancers Australia, can continue to provide value information, advice and support for people at risk of hereditary cancer.
Develop a national prevention strategy and roadmap to reduce the impact of inherited cancer in the Australian community.
Conduct a full economic analysis to understand the cost-effectiveness of risk reduction interventions compared to the treatment of diagnosed cases.
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.
References
1 Breast Cancer Network Australia. Genetics and risk of breast cancer 2023; Available from: www.bcna.org.au/resourcehub/articles/genetics-and-risk-of-breast-cancer/
2 O’Shaughnessy, J., et al., Prevalence of germline BRCA mutations in HER2-negative metastatic breast cancer: global results from the real-world, observational BREAKOUT study. Breast Cancer Res, 2020. 22(1): p. 114.
3 Becourt, S., et al., Comparison of clinicopathological (CP) features and outcome of breast cancers (BC) in BRCA-mutation carriers patients, with a family history without BRCA-mutation and with sporadic disease. Journal of Clinical Oncology, 2018. 36(15_suppl): p. e13522-e13522.
4 National Cancer Institute. Risk Reducing Surgery: Breast Cancer. 2021; Available from: : www.cancer.gov/types/breast/ risk-reducing-surgery-fact-sheet
5 Government of Western Australia Department of Health. Familial Cancer Program 2017; Available from: https://www.healthywa.wa.gov.au/Articles/F_I/Familial-Cancer-Program.
6 Harris, G. and S. Hutson, Hereditary Cancer Genetic Panel Testing: A Review of the Literature. SAGE Open, 2019. 9: p. 215824401983593.
7 Sonnenschein, C. and A.M. Soto, Theories of carcinogenesis: an emerging perspective. Semin Cancer Biol, 2008. 18(5): p. 372-7.
8 Rowley, S.M., et al., Population-based genetic testing of asymptomatic women for breast and ovarian cancer susceptibility. Genet Med, 2019. 21(4): p. 913-922.
9 Ovarian Cancer Australia. Genetics and Ovarian Cancer 2024; Available from: https://www.ovariancancer.net.au/about-ovarian-cancer/genetics-and-ovarian-cancer
10 Prostate Cancer Foundation of Australia. Genes, mutations, and your family tree: The hereditary and genetic factors that can influence prostate cancer outcomes. 2022; Available from: https://www.pcfa.org.au/awareness/pcfa-tv/the-genetics-of-prostate-cancer/
2 O’Shaughnessy, J., et al., Prevalence of germline BRCA mutations in HER2-negative metastatic breast cancer: global results from the real-world, observational BREAKOUT study. Breast Cancer Res, 2020. 22(1): p. 114.
3 Becourt, S., et al., Comparison of clinicopathological (CP) features and outcome of breast cancers (BC) in BRCA-mutation carriers patients, with a family history without BRCA-mutation and with sporadic disease. Journal of Clinical Oncology, 2018. 36(15_suppl): p. e13522-e13522.
4 National Cancer Institute. Risk Reducing Surgery: Breast Cancer. 2021; Available from: : www.cancer.gov/types/breast/ risk-reducing-surgery-fact-sheet
5 Government of Western Australia Department of Health. Familial Cancer Program 2017; Available from: https://www.healthywa.wa.gov.au/Articles/F_I/Familial-Cancer-Program.
6 Harris, G. and S. Hutson, Hereditary Cancer Genetic Panel Testing: A Review of the Literature. SAGE Open, 2019. 9: p. 215824401983593.
7 Sonnenschein, C. and A.M. Soto, Theories of carcinogenesis: an emerging perspective. Semin Cancer Biol, 2008. 18(5): p. 372-7.
8 Rowley, S.M., et al., Population-based genetic testing of asymptomatic women for breast and ovarian cancer susceptibility. Genet Med, 2019. 21(4): p. 913-922.
9 Ovarian Cancer Australia. Genetics and Ovarian Cancer 2024; Available from: https://www.ovariancancer.net.au/about-ovarian-cancer/genetics-and-ovarian-cancer
10 Prostate Cancer Foundation of Australia. Genes, mutations, and your family tree: The hereditary and genetic factors that can influence prostate cancer outcomes. 2022; Available from: https://www.pcfa.org.au/awareness/pcfa-tv/the-genetics-of-prostate-cancer/
Renae Beardmore
Managing Director, Evohealth
Deanna
Mill
Advisor, Evohealth
