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At Breast Cancer Network Australia's (BCNA) National Summit in February 2002, a group of young women who had experienced breast cancer met to ‘network' and discuss issues relevant to them. A number of needs and issues were identified and the group agreed that further discussion was needed. A BCNA Community Grant (2002) funded the formation of a young women's project which produced a national email link for young women affected by breast cancer, a web page and a report with a number of recommendations on issues pertaining to young women (Young Breast Link Report and Recommendations 2003). In June 2004, the Young Women's Working Party became an official working party of Breast Cancer Network Australia, 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, 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 and Support of Younger Women with Breast Cancer are implemented. If these guidelines were implemented across Australia, many of the issues would be resolved. (Note: issues are not presented in order of importance.)
- Misdiagnosis/delay in diagnosis: Time and again we hear from other young women who report that their breast cancer was misdiagnosed or that they experienced a delay in diagnosis ("don't worry, you're too young to have breast cancer").
- Fertility: We want timely information about the effects of treatment on fertility, and options to preserve fertility.
- Contraception: We want timely information about appropriate contraceptives to use after a breast cancer diagnosis.
- Reproduction: We want timely information about the safety of pregnancy after a breast cancer diagnosis.
- Breast feeding: We want information about breast feeding after breast cancer treatment. We also want information about how to wean rapidly if diagnosed with breast cancer while pregnant.
- Menopause: We want information about the short and long-term effects of menopause, and ways to manage menopausal symptoms after breast cancer.
- Reconstruction: We want timely information about reconstruction.
- Fatigue: we want information about fatigue and ways to manage it.
- Sexuality, intimacy and relationships: We need information and the opportunity to talk with someone about the effects of treatment on sexuality, intimacy and relationships.
- Clinical trials: We want to know what clinical trials are available to us and how we can access them.
- Coping with breast cancer - ourselves and our families. Breast cancer affects the whole family. We want information about the possible impact on partners, children of all ages, our parents and siblings. We want information about ways we can cope with the breast experience, and information to assist our families to cope.
- Practical support: We want information about resources that are available to provide practical support after diagnosis, particularly when we have young children, or aging parents.
- Psychological adjustment and emotional support: We want access to appropriate forms of psychological/emotional support at different stages of the journey through breast cancer, immediately at diagnosis and after treatment finishes.
- Familial cancer issues: Many of us are concerned about our own risk of carrying a breast cancer gene mutation, and the potential impact this might have on our children.
- Financial issues: A breast cancer diagnosis and treatment can significantly affect the finances of young women and their families.
- Employment/career issues: Some of us have found that breast cancer and treatment have affected our career pathway, as well as current and future employment prospects.
- Employment/career issues for our partners: Some of us have found that breast cancer and treatment has affected our partners work/employment.
- Insurance: We are concerned about discrimination on the basis of a breast cancer diagnosis when applying for varying types of insurance.
- Rural and remote: We know that living in rural and remote parts of Australia leads to additional stressors for young women dealing with breast cancer.
- Advanced breast cancer: We know that the impact of living with advanced breast cancer may be particularly challenging for young women.
- Advocacy: The issues and needs of young women 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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