Background: There is limited national data on the experiences and decision making of people with inherited breast, ovarian and prostate cancer risk (ie people who have identified gene mutations such as BRCA1/2, PALB2, CHEK2 or ATM or who have a significant family history of cancer). In 2024, we undertook a study is to understand this.
Method: This consumer led research collected qualitative and quantitative data from 884 respondents through an online survey, via convenience sampling. De-identified data has been analysed using descriptive analysis. We did not seek ethics approval for this research. Informed consent was obtained from all subjects.
Aim: To understand the support needs and health experiences of Australians with an increased risk of inherited cancer, with a focus on breast, ovarian and prostate cancer.
Outcomes: There were 884 complete survey responses analysed. 96.3% of respondents were women, with 69% under 54 years old. The majority of responses coming from those in NSW (28.4), VIC (29.2%) and QLD (15.4%). 71% of respondents have a gene mutation. 36% (n, 321) of respondents had a cancer diagnosis. 67% of people with cancer had undertaken some risk reducing surgery. 41% of cancer respondents had spent over $15,000 to manage cancer and risk, compared with 31% of prophylactic patients. 21% of cancer people accessed a mental health support service. Only 4% accessed the cancer council helpline and 26% accessed a cancer nurse. 54% of respondents were under 55 with a cancer diagnosis.
Conclusion: People with inherited cancer risk have a high financial burden and experience cancer at a younger age. Many people have significant family cancer burden across generations and many aren’t seeking mental health support. Patient organisations play an important role in supporting, connecting and educating people so they can make informed decisions about managing cancer and risk.