A large part of our work involves helping women with breast cancer, and their families, to receive the very best information, treatment, care and support possible, no matter who they are or where they live.
One of the ways we do this is through research projects that focus on key issues for women diagnosed with breast cancer. This includes collaborative projects with external organisations.
Recent research project reports
- BCNA's Breast MRI Survey 2012
- BCNA’s Bone Mineral Density Project 2012
- BCNA's Survey of Breast Care Nurses - breast reconstruction 2011
- BCNA's Sexual Wellbeing and Breast Cancer Project 2011
- BCNA's Radiotherapy Survey 2011
- Survivorship Care After Breast Cancer Treatment Research Project 2010
- BCNA's Breast Reconstruction Survey 2010
- BCNA's Herceptin and Heart Health Survey 2010
- Building Better Bras Project 2010
- BCNA's Sexuality After Breast Cancer Survey 2009
- BCNA's Women's Survivorship Research Priorities Research Project 2009
- BCNA's National Survivorship Research Think Tank 2009
- BCNA's Exercise and You Survey 2009
- BCNA's Cost of Follow Up Mammograms Project 2009
- High Cost Drugs Research Project 2008
- BCNA's Partners Survey 2008
Breast Cancer Network Australia (BCNA) often hears from women about the high out of pocket costs associated with breast imaging. In particular, breast MRI scans are used by medical specialists for various reasons, often attract no Medicare rebate, and represent a significant out of pocket cost for women. For women who require regular breast MRI scans as part of their follow-up care and future screening, the cost is annual and ongoing.
In order to better understand the impact of these issues on women, we conducted a survey in December 2012 utilising the BCNA Review & Survey Group. The survey’s key objectives were to:
- Better understand the out of pocket costs of breast MRI
- Better understand why women are being referred to breast MRI
- Understand whether women are foregoing breast MRIs because of the high cost.
The survey requested responses from any woman who has discussed breast MRI with her treating doctor. We were interested in hearing from women who chose not to proceed with their breast MRI, in addition to women who did.
Major findings from the survey include:
- 165 women who responded to the survey had had a breast MRI.
- 49 women who responded to the survey did not proceed with a breast MRI after discussing this with their doctor. For most (60%), cost was a major factor in this decision.
- The average out of pocket cost of breast MRI was $555.
- Most women who responded to the survey were not eligible for a Medicare rebate for their breast MRI.
Hormone therapies, including Tamoxifen and the aromatase inhibitors Arimidex, Femara and Aromasin, are commonly used to treat women who have been diagnosed with hormone positive (ER+ and/or PR+) breast cancer. These treatments can cause a loss of bone mineral density. As a result, women using these hormone therapies may need to undergo bone mineral density tests to monitor their bone mineral density levels. These are called DXA tests, or bone densitometry.
There are Medicare rebates available for DXA tests; however there is no rebate specifically available for women who require a test in conjunction with breast cancer treatment. Women who are not eligible for a Medicare rebate are required to pay the full cost of their tests. These costs further contribute to the substantial financial burden associated with breast cancer treatment and care.
In May 2012, we surveyed members of BCNA’s BReview & Survey Group to find out about their experiences with bone mineral density testing. 447 women completed the survey.
Key findings from the survey are:
- 290 women had at least one test in conjunction with their treatment
- 177 women (61%) had more than one test
- 114 women (39%) were bulk-billed and did not incur any out-of-pocket cost for their last test
- Of the 128 women (44%) who incurred an out-of-pocket cost for their last test, 111 (87%) were charged $200 or less, and 17 (13%) were charged more than $200
In our background investigations we also found that the fees of these tests vary considerably depending on the provider. Given this, BCNA encourages women to call the imaging clinic before their test to ask what, if any, their out-of-pocket cost will be. Some clinics provide bulk-billing for women who are eligible for a Medicare rebate, particularly if women have a health care, concession or pension card. We also encourage women to shop around for a clinic that will charge a lower fee if they are unhappy with the quote received.
We also found that there is a lack of clinical guidance for health professionals in regards to prescribing bone mineral density tests for women being treated for breast cancer.
To read more about the survey findings and the actions BCNA intends to take on this issue, read the survey report below.
During 2010–2011, BCNA has been investigating issues around women’s access to delayed breast reconstruction surgery. In particular, we have been looking at public hospital waiting list times and the cost of surgery in the private health system.
In August 2011, as part of that project, we surveyed breast care nurses (BCNs) about their experiences with women accessing breast reconstruction surgery.
More than one hundred breast care nurses completed our survey. They work in metropolitan, regional and rural areas across all states and territories of Australia.
The BCN survey results broadly support the findings of our previous work on this project.
The majority of BCNs (83%) said women in their local area can access breast reconstruction surgery through a public hospital within two years. In our survey of women, 94% of women said they had received their surgery within two years.
Only a small number of BCNs (52) were able to answer questions about the out-of-pocket costs to women who have their surgery in the private health system. Of those 52 BCNs, 35 (67%) said women in their area have an out-of-pocket cost of more than $5,000. In our women’s survey, 40% of the women who had their surgery through the private system told us they had an out-of-pocket cost of more than $5,000.
We were interested to find that BCNs reported that up to half of the women they see elect not to have a breast reconstruction. The reasons given by women to their BCN reflect that this is largely the woman’s personal choice (based on age, co-morbidities and desire not to have further surgery) rather than as a result of waiting list times, although 44% of BCNs said cost was a factor.
BCNA has now completed its breast reconstruction project, although we will continue to monitor the issues for women. You can read about the findings and outcomes of the project on our Breast Reconstruction Project page.
Many women find that breast cancer has a significant negative impact on their sexual wellbeing. It’s an issue that is too often ignored and as a result, women can often feel isolated and alone.
BCNA recently commissioned researchers from the University of Western Sydney to conduct research with women and health professionals into this important issue.
Over 2,200 women completed the survey, with a staggering 82% of women telling us that breast cancer had affected their sexual wellbeing ‘dramatically’, ‘considerably’ or ‘somewhat’.
However, even though the majority of women said they had experienced negative changes to their sexual wellbeing, only 35% of women had spoken to someone about this.
The top five issues identified by women were tiredness, vaginal dryness, hot flushes, feeling unattractive and weight gain.
In addition 159 health professionals, mostly nurses and primary health practitioners, completed a separate survey. We found that while 89% consider sexual wellbeing to be a ‘very important’ issue for women, only one third ‘always’ address this issue with women. 87% of health professionals reported wanting further information and training about sexual wellbeing and cancer, including how to raise the issue with women.
The report contains candid and honest quotes and comments from women and health professionals, who were prepared to share their experiences in an effort to understand their situation and to help others.
This research builds on a previous simple survey conducted by BCNA in 2009 (which you can read about below), and the Autumn 2010 edition of The Beacon issue 50 which focused specifically on sexual wellbeing.
BCNA will use the research results to develop information and resources for women with breast cancer, and the health professionals who assist them.
Radiotherapy is commonly used to treat women with breast cancer. However, over the years women have told us about severe side effects to their skin that they experienced as a result of radiotherapy, which they found quite distressing.
In April 2011, we surveyed members of BCNA’s Review & Survey Group, to find out about their experiences with this issue. We asked women:
- what skin changes they experienced, if any, as a result of their radiotherapy treatment
- whether they received information to prepare them for these changes to their skin
- what steps they took to care for their skin, and what skin care advice they would offer to other women
- what out-of-pocket expenses they incurred, if any, as a result of their radiotherapy treatment
266 members completed the survey. Most women told us they experienced skin changes that were like sunburn, including redness and burning. 34% of women told us that their skin blistered, while just under a quarter experienced weeping.
We were very pleased that, of the women who received information about radiotherapy related side-effects, 85% told us that this information described the changes that occurred to their skin.
Most women told us they used topical creams, avoided deodorant, or altered their clothing to care for their skin. The most common skin care recommendations were to apply liberal amounts of moisturising cream (including sorbolene and aloe vera), and to wear loose fitted clothing.
Most women told us that the biggest cost burden was the radiotherapy treatment itself. Most out-of-pocket costs were between $1,000 and $2,000; however two women told us they were out of pocket around $4,000.
Follow up care is an increasingly complex issue, with health professionals trying to determine the best model for breast cancer survivors. In 2009, BCNA in conjunction with researchers from The Mater Hospital (Sydney) and The University of Sydney surveyed members of BCNA's Review & Survey Group, to find out what was their experience of follow up care, their attitudes to different models and whether a tailored survivorship care plan was acceptable.
The results found that women were satisfied with their current level of care but needed more information about emotional support and menopausal symptoms and many found the idea of a written care plan appealing. Most of the women reported a high level of trust with their specialist and had a preference to continue this type of care, with concern about the ability of their GPs or breast care nurses to be able to undertake the role of long term cancer care. A model of involving shared care between GPs and specialists rather than a full handover of over could be a way to support specialists and their workload.
- download Survivorship after breast cancer treatment report
- view an abstract of the research via the US based website PubMed
The issue of breast reconstruction following mastectomy for breast cancer has been raised with us by our members over many years. Women have told us about long waiting times for breast reconstructions in the public system (up to 10 years in some states) and high out-of-pocket costs for surgery in the private system, even with private health insurance.
This year we have been investigating some of the issues surrounding breast reconstruction.
In October, we surveyed members to ask them about their personal experiences with breast reconstruction. Women did not need to have had breast reconstruction to participate in the survey, but did need to have considered it. Our survey also asked women who had had breast reconstruction about their satisfaction with the outcome of the surgery. More than 460 women completed the survey.
Of those who had had breast reconstruction surgery, the majority (80%) had their surgery through the private health system. Forty per cent of these women had an out-of-pocket cost of more than $5,000 for their surgery, with some women paying more than $15,000.
We were somewhat surprised to find that public hospital waiting lists did not appear to be a major issue, with 94 per cent of respondents telling us they had their surgery within two years of going on a public hospital waiting list. Of women currently on a waiting list, none had been waiting more than two years. We note, however, that only 20 per cent of our respondents had their surgery through the public hospital system, so our findings may not be truly representative of what is happening in the wider community.
Nearly 75% of women were happy with the outcome of their surgery, rating their satisfaction level at 8 or more out of 10. Eight per cent were unhappy, rating their satisfaction at less than 5.
BCNA will continue to look at the issues surrounding breast reconstruction and will report back to members through future editions of The Beacon and this website.
- download BCNA’s Breast Reconstruction survey report
- read more about breast reconstruction in issue 53 of The Beacon magazine
- read more about BCNA's breast reconstruction project on the Breast Reconstruction Project page
Herceptin is a targeted treatment for women with HER2-positive breast cancer and has been found to be very effective in treating these types of cancers. However, a side effect in a very small number of women can be an increased risk of heart problems. For this reason, heart monitoring before and during treatment is a government requirement for women receiving Herceptin for early breast cancer through the Pharmaceutical Benefits Scheme (PBS).
Earlier this year, BCNA surveyed members with HER2-positive early breast cancer about their experiences with Herceptin. We asked women:
- what information they were given by their doctors about Herceptin and its side effects
- whether they had regular heart monitoring during their treatment
- what out-of-pocket costs, if any, they incurred for their heart tests, and
- whether they developed a heart condition while undergoing treatment with Herceptin.
275 women completed the survey and we were pleased to find that nearly all of them had received some heart monitoring, and that 90 per cent had monitoring in accordance with the government requirements.
Seventeen women reported developing a heart condition that required them to stop their Herceptin treatment, however at least eight of them were able to resume Herceptin after receiving treatment for their heart condition. These results were in line with the findings of major international clinical trials on Herceptin.
Of particular concern to BCNA was that 40 per cent of women told us they were required to pay an out-of-pocket cost for their heart monitoring tests, ranging from less than $50 to more than $300.
- download BCNA's Herceptin and Heart Health report
- read an article in the West Australian newspaper about the report
It is well accepted that exercise provides a range of benefits for women with breast cancer. While some research has previously been undertaken into barriers to exercise, the Building Better Bras project being undertaken by researchers at the University of Wollongong, in collaboration with BCNA, is the first to look at whether a woman's bra comfort may limit her ability to exercise.
In July 2009, more than 400 women with breast cancer, many of them members of BCNA's Review & Survey Group, completed an online survey about their exercise habits and whether their exercise bra restricts their activities.
Nearly half the women surveyed (184) reported that the bra they wear for exercise is uncomfortable. Sixty-eight women (16%) said their bra is so uncomfortable it prevents them from doing some types of exercise activity.
The researchers plan to use the information provided by the survey to help them in the design of new, comfortable exercise bras.
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 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.
Overwhelmingly, 91% of women told us that their breast cancer diagnosis and treatment did impact on their sexuality. 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.
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, but little is known about what women see as the priority issues in this phase. In April 2009, BCNA commissioned researchers from Monash University to conduct a survey of BCNA's members to identify these priority issues in six thematic areas:
- physical health
- emotional health
- lifestyle issues
- family and relationship issues
- follow up care
- practical and day to day issues
835 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.
- download the executive summary for more information about the findings and recommendations
- more information about survivorship
With the support of the National Breast Cancer Foundation (NBCF), on 20 March 2009 BCNA invited key researchers from around Australia to highlight priorities for future research in this area.
- share national and international research initiatives
- map current research in the priority areas
- foster collaboration
- inform BCNA's contribution to the Survivorship chapter of the NBCF's Strategic Research Plan.
The group identified several priority areas for research:
- health economics
- cultural and socioeconomic research
- data on secondary breast cancer
- piloting initiatives.
The outcomes of the Think Tank informs our work on women's key research priority areas, and our advocacy work on these issues.
- download the full report for more detail on the outcomes of the Think Tank
- more information about survivorship
In September 2009, BCNA invited members of the Review & Survey Group to complete a survey about their exercise behaviour.
- do you exercise?
- how often do you exercise?
- what type of exercise do you enjoy?
- what challenges do you face in exercising?
Results showed us that:
- over 60% of women participated in regular exercise
- the top four activities were gym sessions (60%), Pilates (24%), golf (15%) and YWCA's Encore program (15%)
- dragon boating was also a popular choice
- finding time to exercise was a challenge
- overall women found exercise provided a range of positive health benefits.
The media attention given to the BreastScreen Australia evaluation report 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 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.
- download BCNA's report from our survey of members
- download the article featured in The Australian newspaper on this issue
BCNA worked in partnership with Honours student, Emily Kaser and researchers from the University of Sydney to find out 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. The findings showed that women wanted oncologists to provide them with all their treatment options, even if they were very expensive.
This survey researched the effects of breast cancer on women's partners and on their relationships. 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.