Meeting the survivorship and rehabilitation needs of women with secondary breast cancer by Danielle Spence.
When I was diagnosed with secondaries I didn’t feel as though I should wear my survivor pin as people might think that was strange. I still feel like a survivor though, I am a survivor until I die.’
Breast Cancer Network Australia (BCNA) is Australia’s leading breast cancer consumer organisation with over 100,000 members, including over 3,600 members who are living with secondary breast cancer.
Increasing support to women with secondary breast cancer is a strategic priority for BCNA and we are doing this through evidence based research, including focus group discussions, collaborative research projects and member surveys.
Although data around stage of breast cancer at diagnosis is not routinely collected in all states, it is estimated that approximately 9000 Australian women are currently living with secondary breast cancer. Whilst overall survival remains on average at around two-three years, the survival range is very wide with some women living with secondary disease for much longer.
New and emerging treatments are resulting in substantial long term survival benefits in selected groups of women. As a consequence some women are living with relatively stable disease, at times for many years. For others, secondary breast cancer is a long-term chronic health condition involving multiple treatments over time that can lead to long lasting functional limitations.
BCNA Secondary Breast Cancer Survey
In August 2014, Breast Cancer Network Australia conducted a survey of over 580 women living with secondary breast cancer to identify their unmet supportive care, financial, practical and information needs. In this survey:
- Average age of participants was 56
- Majority of women (90%) were undergoing some form of treatment
- 27% of participants reported secondary breast cancer as a first diagnosis.
- 77% had been diagnosed in the past 5 years
- 15% were diagnosed 5-10 years ago and 7% more than ten years ago.
Although we understand that women living with secondary breast cancer have many unique needs, including palliative care and end of life needs, results of our survey highlighted that they also have survivorship needs.
Some of these survivorship needs are similar to those experienced by women with early breast cancer, particularly for long term survivors and for those with stable disease. This includes long term treatment side effects, including menopausal side effects, managing fear and anxiety, relationships and body image, managing finances and work, and seeking support.
The three highest unmet needs reported in our survey were fear about the cancer spreading further (55%), lack of energy and tiredness (54%) and uncertainty about the future (45%).
Managing finances was the key unmet practical need across both public and private health care systems with 60% of women identifying that their secondary breast cancer had resulted in some financial difficulty in the past week.
Out-of-pocket expenses and loss of income were the highest causes of financial difficulty.
What next … I need a job to help save money for when I’m going to need more care, for a holiday, to pay off debt, pay for rent etc. etc.’
Considering the average age of survey participants was 56, there was a relatively high proportion of women still employed in the work force (33%). However 31% reported a change in their working role for the worse, with 6% reporting they had experienced work place discrimination related to their diagnosis.
I was not given my usual duties on return, and am not given or considered for more ‘responsible/important’ tasks anymore. I am used to ‘fill up the gaps’ instead of my usual work.’
We asked women in our survey to identify the types of strategies they would like more information about to help manage these unmet needs. Women identified that the overall preferred strategy was learning about ways to self manage.
Survey participants reported limited access to information and support programs directed at addressing these needs. They also report minimal contact with supportive care health professionals who could advise on self care strategies to maximise their ability to live well.
In particular women reported limited contact with a specialist breast care nurse (BCN) compared to during their early breast cancer experience. Only 18% of women surveyed said they had seen a BCN since their secondary breast cancer diagnosis
The current model of survivorship care focuses on women with early breast cancer perceived as ‘free of disease’. This approach lacks attention to the concerns of women with secondary breast cancer who are experiencing similar supportive care and survivorship needs. BCNA’s survey has identified a need to broaden the definition of cancer survivorship to improve the quality of survival for a wider group of cancer survivors including women living with secondary breast cancer.
As women with secondary breast cancer continue to live longer, BCNA would like to see survivorship and rehabilitation services extend their programs to include women with incurable disease to assist them manage their illness and lead fulfilling lives.
I will be living with and dying from secondary breast cancer until I take my last breath.’
Danielle Spence is the Senior Policy Officer at the Breast Cancer Network Australia (Image credit: BCNA).
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.