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Sexuality is a topic not often discussed, but many women find there are changes in their sexuality and sex life after a diagnosis of breast cancer.
In September 2009, we invited invited members of our Review & Survey Group to take part in an online survey to find out more about this issue. We received 243 responses from women, some single and some in relationships.
We used both quantitative and qualitative questions, so women who responded were able to tell us in their own words about their personal experience. The results have been used to inform a new section in the second edition of BCNA's My Journey Kit.
Overwhelmingly, 91% of women told us that their breast cancer diagnosis and treatment did impact on their sexuality.
We asked women to tell us about the kinds of physical and emotional challenges that they faced. The most common physical issues experienced by women were:
The most common emotional challenges were:
Over 50% of women told us they had not discussed with anyone the challenges they were experiencing with their sexuality or sex life. The women who did seek support were more likely to speak to someone close to them, such as their partner or a friend. Single women raised many concerns about starting new relationships. Only 50% of single women told us they had started a new relationship after breast cancer treatment.
If you would like to read more about our results, the summary report is available here for download:
 BCNA Sexuality after Breast Cancer Summary Report March 2010 90.94 Kb
We received an overwhelming response to the call for stories for the Autumn edition of the Beacon magazine, with many wonderful and heartfelt stories being sent in by our members. Our research results, combined with the Beacon stories, demonstrate that sexuality is a significant issue for women and we will continue our work in the area throughout 2010.
Women's Research Priorities Research Project Breast cancer ‘survivorship’ is a key focus for Breast Cancer Network Australia (BCNA) throughout 2009 and beyond. BCNA has a definition of 'survivorship' and more information available on our website.
While researchers and health professionals are increasingly aware of the importance of responding to the needs of women in the extended phase of their breast cancer journey, little is known about what women see as the priority issues for research. In April 2009, BCNA commissioned researchers from Monash University to conduct a survey of BCNA’s members. The survey aimed to identify the priority ‘survivorship’ research issues from the women’s perspective.
We asked our members to tell us what they thought were the key research priorities in six thematic areas:
- Physical Health
- Emotional Health
- Lifestyle Issues
- Family and relationship Issues
- Follow up care
- Practical and day to day issues
A total of 835 women completed the survey. Women identified the top ten issues they see as priorities for future research, which included the physical risk of cancer recurring, the long-term impact of medical treatment on physical health, Lymphoedema, the fear of cancer recurring and access to good follow up care.
Key recommendations include the need for research that is focused on the long-term physical impact of breast cancer, women's emotional wellbeing, information for women, research to identify appropriate models for follow up care, and an in-depth focus on women's experiences of adjusting to life after breast cancer.
More details about the findings and recommendations can be found in the executive summary, available for download below.
Executive Summary - BCNA's Women's Survivorship Research Priorities Report Dec 2009 65.98 Kb
To read women's stories about survivorship, click here and scroll down.
In March 2009 BCNA held a Research Think Tank, focusing on survivorship. Researchers from around Australia came together to determine key research priorities in survivorship. More details about the Think Tank and the report can be found below.
Last updated: December 2009
BCNA's National Survivorship Research Think Tank 2009
Exploring the issues women face after completing active treatment for breast cancer is an important area of work for BCNA in 2009.
With the support of the National Breast Cancer Foundation (NBCF), on March 20, 2009 BCNA invited key researchers from around Australia to highlight priorities for future research in this area. The aims of this ‘Think Tank' were to share national and international research initiatives, map current research in the priority areas, foster collaboration, and inform BCNA's contribution to the Survivorship chapter of the NBCF's Strategic Research Plan.
The group identified several priority areas for research including exercise, health economics, cultural and socioeconomic research, data on secondary breast cancer and piloting initiatives. Some key suggestions for BCNA included ideas for future Beacon articles and features, and the recommendation that a research Think Tank be held on an annual basis. The outcomes of the Think Tank will inform our work on women's key research priority areas, and our advocacy work on these issues. More details on the outcomes of the think tank can be found here:
BCNA Think Tank Report March 2009 259.12 Kb
Last updated: December 2009
BCNA's Exercise and You Survey 2009
In September 2009, BCNA invited members of the Review & Survey Group to take part in a survey about their exercise behaviour. We asked women to tell us whether or not they exercised, if they did exercise how often, the types of exercise they enjoyed. We also asked women to tell us about any challenges they face in taking part in regular exercise.
Over 60% of women told us they participated in regular exercise, with the top four activities being gym sessions (60%), Pilates (24%), golf (15%) and YWCA's Encore program (15%). Dragon boating was also a popular choice. Many women told us finding time to exercise was a challenge, however overall women found exercise provided a range of positive health benefits. More details can be found in the report available here:
Exercise Survey Report September 2009 64.80 Kb
Last updated: December 2009
BCNA's Cost of Follow Up Mammograms Project 2009
The media attention given to the BreastScreen Australia evaluation report last week has put the spotlight on the fact that once a woman is diagnosed with breast cancer she no longer receives free mammograms.
A recent survey of our members highlighted that women keenly feel the inequity of being able to access mammograms at no cost when they are well, but having to pay for mammograms following a diagnosis of breast cancer.
Results from our survey showed that women are paying anywhere between $10 and $375 for their annual mammograms, with the majority paying between $50 and $150.
These costs only add to the financial burden that many women experience following breast cancer, and often comes at a time when women are still dealing with the emotional distress of their diagnosis and treatment.
BCNA is keen to see this situation addressed, either by allowing women with breast cancer to have their follow up mammograms through BreastScreen, or by the creation of a consistently applied full rebate.
To read BCNA's report from our survey of members, see below:
BCNA Follow Up Mammograms Report April 2009 147.56 Kb
The article featured in The Australian newspaper on this issue can be downloaded here:
The Australian 17 September 2009 93.02 Kb
Last updated: September 2009
High Cost Drugs Research Project 2008
In 2008, BCNA worked in partnership with Honours student, Emily Kaser and researchers from the University of Sydney to undertake research on whether women with breast cancer want their oncologists to tell them about high cost drug treatments. Drugs such as Herceptin and Tykerb, which cost women thousands of dollars before they were subsidised through the Pharmaceutical Benefits Scheme (PBS), are often referred to as high cost drugs. Overall women said they wanted oncologists find out what kind of information they wanted to know. Women also wanted oncologists to provide them with all their treatment options, even if they were very expensive. The findings of this study will assist in the development communication skills training for health care professionals. More information can be found in the summary below:
High Cost Drugs Research Summary 473.85 Kb
Last updated: May 2009
BCNA's Partners Survey 2008
BCNA recently conducted a survey into the effects of breast cancer on women’s partners and on their relationships. We surveyed a random selection of women from our ‘Review and Survey group’ which is comprised of women who have registered with us to respond to surveys. Sixty four responses were received. Throughout the survey, we asked women about the effects of breast cancer on their relationship at specific stages of their journey from the time of diagnosis through to two or more years after the end of active treatment. We found that for many couples the breast cancer journey doesn’t end with the end of active treatment, but in fact this marks a new stage in their relationship. For full details, please see the survey report below:
BCNA Partners Survey Results - 2008 123.66Kb
Last updated: October 2008
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