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Until relatively recently, the needs and concerns of women living with secondary breast cancer have not been talked about much in the medical or public arena. However, this situation is beginning to change.
In February 2002, at Breast Cancer Network Australia's (BCNA) National Summit, the BCNA Advanced Breast Cancer Working Party was formed. Since then, women from around Australia have met regularly by teleconference and via email to identify the needs and issues for women with secondary breast cancer, providing a grassroots advisory group for BCNA's advocacy work.
Below is a list of the issues identified by this Working Party. Together with the recommendations from the Still Making a Difference Summary, resulting from Australia's 2nd National breast Cancer Conference for Women. BCNA is currently developing strategies to address these issues. One of our key strategies is to work with other organisations to ensure the National Breast Cancer Centre's Clinical Practice Guidelines for the Management of Advanced Breast Cancer are implemented. If these guidelines were implemented across Australia, many of the issues would be resolved.
- No national data: In Australia, there is no national data collected on the number of Australians diagnosed with secondary breast cancer. How can the needs of Australians living with secondary breast cancer possibly be met, or funding resources allocated appropriately, if we don't know how big the problem is?
- Misdiagnosis/delay in diagnosis of metastases: Some women report a delay in diagnosis of metastases despite telling their doctors they had symptoms.
- Negative reactions of others: Sometimes family, friends, colleagues and health professionals respond to us as though we're dying - despite the fact that many of us live full and productive lives for many years after a secondary breast cancer diagnosis.
- Lack of accessible (easy to get, easy to read) information: Many of us want information about secondary breast cancer, how it's treated, what clinical trials might be available. We also want information about where to get practical, emotional and financial support. Many women are not given the National Breast Cancer Centre's A Guide for Women with Metastatic Breast Cancer (see our resource list).
- Lack of appropriate, accessible, affordable emotional support options (individual or group support). There are very few support groups for women with secondary breast cancer in Australia, Cancer Councils generally don't accept those with secondary breast cancer into their peer support programs, counselling with psychologists or psychiatrists can be very costly, and often we're not feeling well enough to attend services that might exist.
- Access to pharmaceuticals: We want improved, affordable access to pharmaceuticals which can significantly improve quality or length of life.
- Few support options available for partners and family members. Breast cancer is not experienced in isolation - partners, families and friends are all affected and need support to help them deal with their own feelings and fears as well as guidance in providing support to the person dealing with the disease.
- Women living with secondary breast cancer need ongoing, coordinated multidisciplinary medical care between the hospital and the community throughout their journey with breast cancer.
- Many women incur a significant financial burden after a diagnosis of secondary breast cancer.
- Many women living with secondary breast cancer do not access palliative care services in a timely manner.
- Discrimination: We are aware of many examples of discrimination at a number of levels including in the workplace (sick leave, promotion opportunities) and with insurance (travel, life, health).
- Young women may face additional stressors when living with secondary breast cancer.
- Rural and remote: The impact of living with secondary breast cancer may be particularly challenging for those living in rural and remote parts of Australia, due to distance from services and isolation from support services.
- Advocacy: The issues and needs of women living with secondary breast cancer need to be highlighted to both the medical and consumer communities, and opportunities to address these issues/needs should be actively sought.
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