“Some days I feel more anxious and less confident about my future than I did when I was diagnosed three years ago. And most people think you should be over it now and should just get on with things.”
Women with breast cancer experience a range of challenges following a breast cancer diagnosis. Many of these are directly associated with breast cancer treatment and care. However many women experience ongoing issues that begin during or after active treatment, which can have a significant impact on their quality of life.
Breast Cancer Network Australia (BCNA) recently undertook research to identify the needs and challenges, including survivorship issues, facing Australian women with breast cancer.
A mixed methods survey was sent to 8,157 women who had been diagnosed with breast cancer. 1,326 completed surveys were received, a 16% response rate. Cross tabulation analysis was performed by age, geographical location, diagnosis and time since diagnosis.
35% (462) of respondents had been diagnosed in the preceding two years; 39% (513) between two to five years ago; and 26% (351) six or more years ago.
86% of respondents had been diagnosed with early breast cancer and 14% were living with secondary (also known as advanced, metastatic or stage 4) breast cancer.
54% were from a major city, with 45% from regional, rural or remote areas. 87% of respondents were aged 45–74 years. 18% (229) of respondents were living alone.
Challenges since diagnosis
Women were asked to rank a list of 10 challenges, indicating the degree to which they had been affected by that challenge using descriptors of ‘a lot’, ‘quite a bit’, ‘a little’, ‘not at all’, or ‘unsure’.
The five challenges that most affected respondents, when combining responses of ‘a lot’ with ‘quite a bit’ were:
- ongoing concerns about wellbeing – 59% (780)
- emotional wellbeing – 56% (749)
- managing treatment side effects – 52% (686)
- impact on family and friends – 45% (593)
- financial pressure – 41% (541)
Differences based on the time since diagnosis were not statistically significant. However it is worth noting that women who had been diagnosed between two and five years ago ranked ‘managing side effects’ higher than all other women.
“The side effects of oestrogen-suppressing drugs like Arimidex can be crippling and cause patients to agonise over whether it is really worth sticking to the five year prescription.”
Women who had been diagnosed between six and ten years ago identified challenges associated with ‘emotional wellbeing’ higher than all other challenges.
Women diagnosed more than 10 years ago ranked ‘managing side effects’ higher than all other challenges.
The information needs of women were highlighted through qualitative responses (n=351).
Women sought information on a range of topics including:
- lymphoedema and its treatments
- breast reconstruction
- physical activity and healthy eating
- sexual wellbeing
- information for employers when returning to work
- managing the side effects of hormone treatment
- financial entitlements and financial planning
- cancer genetics and preventative measures for at-risk family members.
Women diagnosed between two and five years ago highlighted a need for information for partners.
“Partners are often more affected than the person going through the cancer. They are the ones holding everything together.”
Input was sought from respondents on specific issues they would like BCNA to advocate on their behalf (n=641).
The most significant advocacy issue was the financial cost to women of treatment – 37% (240) – regardless of whether women had private health insurance or were using the public health system.
“Not everyone is privately covered and the cost is debilitating for some women.”
“The appalling cost of the whole program of treatment, surgery and reconstruction for women with private health cover.”
This included assistance for women experiencing financial issues, as well as information and advocacy on available Medicare and Centrelink benefits, and superannuation entitlements.
Survivorship issues remain key long-term challenges for Australian women diagnosed with breast cancer, in particular the ongoing psychosocial needs, needs associated with managing treatment side effects, and the financial impact of breast cancer.
These challenges extend beyond the timelines for many current models of survivorship care. Access to community based organisations and services such as BCNA may assist women in managing these challenges.
Michelle Marven is the Research and Projects Manager at Breast Cancer Network Australia.
Breast Cancer Network Australia (BCNA) works to ensure Australians affected by breast cancer receive the very best support, information, treatment and care appropriate to their individual needs. For more information visit www.bcna.org.au.