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Research reports

BCNA's vision is that Australians affected by breast cancer receive the very best support, information, treatment and care appropriate to their individual needs.

Our research projects, which focus on key issues for women diagnosed with breast cancer, help us to ensure that we are reflecting the needs of women in our work. This includes collaborative projects with external organisations.

Recent research project reports

Treatment Decisions of Rural Women Diagnosed with Breast Cancer: Key findings

In 2016, Breast Cancer Network Australia (BCNA) undertook research to explore whether individuals living in rural areas make different treatment decisions to those in metropolitan areas. The research also explored what factors impact the decisions made by women in both areas. As part of the project, we developed an online survey and conducted a number of telephone interviews with members of BCNA’s Review & Survey Group living in outer regional, remote or very remote areas of Australia. In total, 815 women diagnosed with breast cancer completed the online survey. Telephone interviews were conducted with nine members of Review & Survey Group.

Of those who participated, 45% (n = 365) lived in a metropolitan area, 31.9% (n = 260) in an inner regional, 20.1% in an outer regional (n = 164) and 3.2% (n = 26) in a remote or very remote area. The majority of participants (69.9%) had been diagnosed with early breast cancer, while 21.0% had been diagnosed with ductal carcinoma in situ (DCIS) or lobular carcinoma in situ (LCIS), 5.8% with metastatic breast cancer and 3.3% were unsure or preferred not to say.

The majority of participants, regardless of where they lived, reported they had some involvement in the decisions made about what breast cancer treatment to have. Of those who were not involved in making decisions about treatment, the majority said they did not have any options because of the type of breast cancer they had, while others said their doctor did not discuss options with them or they did not want to be involved.

For both rural and metropolitan women, the main influence on the treatment decisions women made was the desire to do everything possible to get better and reduce the chance that cancer would come back. Significantly, more women in rural areas compared to metropolitan areas said their decision was strongly impacted by the location of treatment services. A greater proportion of women in rural areas also said the financial costs of treatment strongly influenced their treatment decisions compared to women in metropolitan areas. Fewer women in rural areas said the option of having a breast reconstruction impacted the decisions they made about treatment than women in metropolitan areas, and the study found that fewer women in rural areas compared to metropolitan areas ended up having a breast reconstruction.

We are currently developing a journal article about this project and will provide a link to the final article on our website once it is published.

Lymphoedema services in Victoria: 2016 Survey

Recently, a number of public lymphoedema clinics in Victoria have closed and BCNA received reports that other clinics are not taking new referrals. In June and July 2016, BCNA conducted an online survey with Victorian members of our Review & Survey Group to understand more about the impact of these closures on Victorian women who have had breast cancer.

Around 20% of those who responded to the survey told us they have had difficulties accessing lymphoedema services in Victoria, because either the clinic they wanted to attend had been closed or it was not taking new referrals. Over one quarter of respondents said they had received treatment through a private practitioner, but would have preferred to go to a public clinic had one been available to them.

BCNA has been using the findings of this survey in joint advocacy work with Cancer Council Victoria, the Australian Lymphology Association and the Lymphoedema Association of Victoria to help ensure that all Victorians affected by lymphoedema have access to treatment that is both timely and affordable.

Costs of Breast Imaging Survey

In November 2016, BCNA undertook research with members of our Review & Survey Group on their experience of the costs of breast imaging. Breast imaging includes mammograms, ultrasound and Breast MRI (Magnetic Resonance Imaging).

We know that there can often be an out-of-pocket cost for breast imaging. Medicare rebates may also be limited under the Medicare multiple services or multi-item billing rules, depending on the type of imaging service and item number used. For example, a Medicare rebate may not be payable for a breast biopsy done one the same day as a breast ultrasound, resulting in some women having to return to the imaging clinic on another day for a biopsy.    

Major findings of the survey were:

  • Most respondents feel they pay too much for the imaging services they need (38%), or do not pay anything for their imaging services as they are bulk billed (32%).
  • A small proportion, around 4%, of respondents chose not to have an imaging service recommended by their doctor because of high out-of-pocket costs.
  • Most respondents are able to access imaging services close to their home: however, for the 11% of respondents who needed to travel more than one hour each way to access services, additional transport costs were typically between $41 and $60 (36% of respondents who had to travel) and $81-$100 (27% of respondents who had to travel).
  • 91% of respondents had more than one imaging service on the same day.
  • Only 4% of respondents were aware of the multiple services or multiple-item billing rules.

BCNA will use these findings, and the findings of a larger study into the financial impacts of breast cancer, to support our advocacy work to reduce out-of-pocket costs of breast imaging.

BCNA’s men with breast cancer consultation project

Around 150 men are diagnosed with breast cancer in Australia every year. While this is a small proportion of the total number of people diagnosed – less than one per cent – a diagnosis can bring some very specific challenges for men.

In 2014 BCNA developed a booklet, Men get breast cancer too, for men diagnosed with breast cancer. In 2016, BCNA carried out further work to better understand the needs and challenges that men face after a diagnosis of breast cancer. As part of this work, BCNA consulted with a group of Australian men diagnosed with breast cancer.

The aims of this report are to provide a summary of the findings of this consultation, and to identify what BCNA and the broader community can do to improve outcomes for men.

The report is for use by health professionals, policy decision makers, community sector organisations, and all those with an interest in the issues and challenges facing men diagnosed with breast cancer in Australia.

Rural Forums help women connect

Since 2008, BCNA has reached over 5,000 rural women through our rural information forums. These forums share information about medical, physical and emotional aspects of living well with breast cancer.

Recently, we surveyed women to learn about breast cancer related challenges they faced, and whether forums gave them useful support.

Emotional issues were the biggest challenges women faced. Other big challenges were being active and well, and dealing with side effects.

Over 70% of women said forums helped them face their challenges, especially emotional ones. The forums also helped women to connect with others, and with local services.

BCNA presented these results in a poster at the 19th Cancer Nurses Society of Australia (CNSA) Annual Congress in Cairns 12-14 May 2016. We had the honour of winning the Best Poster award for the Congress.

We are also using the results from the study to make future rural forums even better. A big thank you to everyone who participated: sharing your experiences helps BCNA help others.

Secondary Breast Cancer Telephone Counselling Service Pilot Project – Executive Summary

From October 2015 to January 2016, BCNA ran a free national telephone counselling pilot program for Australians living with secondary breast cancer and their family members. A total of 50 people participated in the pilot, including 48 women living with secondary breast cancer and two family members.

The program was independently evaluated.

Key findings of the evaluation included:

  • 90% of respondents who completed the evaluation survey either fully or partially received what they needed
  • 80% reported that the counselling helped them adjust to life with secondary breast cancer
  • 73% indicated the service met or exceeded their expectations
  • 67% of participants said their wellbeing improved since counselling.

Due to the pilot’s success, BCNA is now offering an ongoing, free, one-on-one telephone counselling service for people living with secondary breast cancer and their family.

More information about the program, including how to make a booking, is available here.

BCNA’s Survey Report - The support and information needs of women with secondary breast cancer

In August 2014, BCNA undertook research with Australians living with secondary breast cancer to better understand the needs and challenges faced by women with secondary breast cancer. As part of this project, we developed an online survey to identify the unmet financial, practical, information and supportive care needs of women living with secondary breast cancer in Australia.

In total, 582 women and men diagnosed with secondary breast cancer responded to the survey. This included 579 women and three men. Those who responded lived in all states and territories. Fifty-nine per cent of women (328) lived in a metropolitan area and 41% (228) lived in a regional, rural or remote area.

Key findings of the research were:

  • 27% of women (370) experienced secondary breast cancer as their first diagnosis of breast cancer
  • 60% of women (351) indicated they had experienced financial difficulty in the previous week due to their secondary breast cancer.
  • 31% of women (182) reported a change for the worse in their working role
  • 34% of women (260) had not seen a breast care nurse since being diagnosed with secondary breast cancer.
  • 29% of women (169) reported not receiving enough emotional support from their treatment team
  • When discussing strategies they used to cope with their diagnosis and keep themselves well, many women talked about exercise, socialising with family and friends, participating in hobbies, sleeping and eating well and reducing overall stress.
  • Women indicated that their highest unmet needs related to:
    - fears about the cancer spreading further
    - lack of energy / tiredness
    - uncertainty about the future

Based on the research findings, BCNA has developed a number of key recommendations and research priorities to help support women diagnosed with secondary breast cancer and their families. It is hoped that the findings and recommendations will contribute to greater awareness of the experiences and unmet needs of women living with secondary breast cancer and be translated into improvements in treatment, care and support for women and their families.

BCNA Survey Report - A diagnosis of breast cancer following screening mammogram: the woman's experience

In September 2014, BCNA undertook research with members of our Review & Survey Group on their experience of being diagnosed with breast cancer following a screening mammogram. Screening mammograms are mammograms that are done when women do not show any signs or symptoms of breast cancer. Women may be diagnosed through a screening mammogram at a BreastScreen Australia service or private imaging clinic.

Major findings of the research were:

  • 198 women (86%) understood most or all of what they were told by the health professionals about their diagnosis of breast cancer
  • 197 women (90%) understood ‘most’ of the written information they were given to take home, or understood it ‘very well’
  • 146 women (65%) felt they received enough support from the health professionals present when they were diagnosed, although 45 (20%) would have liked to receive more emotional support
  • 41 women (18%) would have liked to have a support person with them when they were diagnosed.

As a result of this research, BCNA has made a number of recommendations about what should happen when women are recalled to BreastScreen following a screening mammogram:

  1. Women should be provided with consistent standard written information about what may happen at the follow-up appointment, including possible tests and procedures, and that they can bring their partner or another support person to the appointment if they wish
  2. Partners/support people should be included in consultations if that is the woman’s wish
  3. Wherever possible, delivery of a diagnosis of breast cancer should be provided at a face to face appointment by a health professional who can clearly explain the diagnosis, the next steps in the process and answer any questions the woman or her partner/support person may have
  4. High quality written information should be provided to women at the time of diagnosis
  5. A study should be developed and conducted to measure women’s experience of being diagnosed with breast cancer through BreastScreen Australia services.

The findings of the survey were presented at the national BreastScreen Australia Conference in October 2014. Following the presentation, a number of BreastScreen representative approached BCNA to discuss the findings. This has led to the development of a larger project being undertaken by BCNA in collaboration with BreastScreen services in a number of states in 2015.

BCNA Secondary Breast Cancer Awareness Day Focus Group Report 2014

In 2014, Breast Cancer Network Australia (BCNA) recognised Secondary Breast Cancer Awareness Day for the first time in Australia.

Secondary Breast Cancer Awareness Day is internationally recognised on October 13 each year. In previous years, it has been acknowledged in the UK, US and Europe, but not Australia.

We know from research and feedback from our membership that women living with secondary breast cancer have unique needs and challenges. Sometimes women with secondary breast cancer tell us they feel ‘overlooked’ or ‘invisible’, particularly during October (Breast Cancer Awareness Month).

BCNA wants to ensure that women with secondary breast cancer are acknowledged and supported.

In August 2014, we hosted a Focus Group in Melbourne with some of our members living with secondary breast cancer. Eleven women attended, and two more participated in individual telephone interviews. The Focus Group was asked:

  • how they felt BCNA should recognise Secondary Breast Cancer Awareness Day
  • how BCNA can best support women with secondary breast cancer.

These women kindly shared with us their personal experiences, challenges and ideas. Their contribution is deeply valued by BCNA, and has been used to inform our planning – not only for Secondary Breast Cancer Awareness Day, but for how we can acknowledge, support and represent women with secondary breast cancer into the future.

The report (see below) summarises the Focus Group findings, including conversations with the two women who were unable to make the date but spoke to us later on the telephone.

BCNA thanks all the women who took the time to participate in the Focus Group or in a phone conversation with BCNA staff.

More information about Secondary Breast Cancer Awareness Day 2014 will be posted on our website and Facebook page in coming weeks.

 

BCNA My Journey Kit Survey Report 2014

In June 2014, BCNA conducted a survey of women who had received My Journey Kit in the previous 18 months. This survey was undertaken to inform the comprehensive review of My Journey Kit that was carried out during 2014.

The aim of the survey was to hear women's thoughts on:

  • the quality, relevance, content, and look-and-feel of the current My Journey Kit
  • whether there are any information gaps, or emerging needs
  • their opinions on what online / digital delivery of information would be of value.

The survey was sent to 558 women who had received a My Journey Kit in the previous 18 months -- 358 members of BCNA's Review & Survey Group were invited to complete an online survey, and 200 My Journey Kit recipients without an email address were sent a hard copy of the survey by mail. In total, 138 anonymous responses were received.

While key findings are reported in the Executive Summary and full report, all feedback was reviewed and taken into account during development of the third edition of the My Journey Kit which was published in April 2015.

BCNA Breast MRI Survey Report 2012

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.

Download BCNA's 2012 Breast MRI Survey Report.


BCNA’s Bone Mineral Density Project 2012

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.


BCNA's Survey of Breast Care Nurses - breast reconstruction

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.


BCNA's Sexual Wellbeing and Breast Cancer Project 2011

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.


BCNA's Radiotherapy Survey 2011

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.


Survivorship Care After Breast Cancer Treatment Research Project 2010

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.


BCNA's Breast Reconstruction Survey 2010

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.


BCNA's Herceptin and Heart Health Survey 2010

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.


Building Better Bras Project 2010

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.


BCNA's Sexuality after Breast Cancer Survey 2009

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.


BCNA's Women's Survivorship Research Priorities Research Project 2009

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.


BCNA's National Survivorship Research Think Tank 2009

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.

Aims:

  • 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:

  • exercise
  • 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.


BCNA's Exercise and You Survey 2009

In September 2009, BCNA invited members of the Review & Survey Group to complete a survey about their exercise behaviour.

Questions included:

  • 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.


BCNA's Cost of Follow-Up Mammograms Project 2009

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.


High Cost Drugs Research Project 2008

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.


BCNA's Partners Survey 2008

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.