BREAST CANCER NETWORK AUSTRALIA’S MAGAZINE | ISSUE 95 | JUNE 2023 | ISSN 1834-5921
Letter CEO FROM THE
LISTEN, WATCH, READ
CONTENTS
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Letter from the CEO
NEWS
I t’s a privilege to be welcoming you to this special edition of The Beacon – celebrating 25 years of BCNA. After 17 years with
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BCNA News
this year donning pink either on the field or on the sidelines in support of Australians affected by breast cancer as part of our Pink Sports Day campaign. Check out all our pink on page 19. One of the most joyous parts of my role is to travel the country for our Living Well with Breast Cancer Information Forums. This year we have been to Port Lincoln, Warrnambool and Darwin. We know that these events not only provide up-to-date information, they are also a place for our Network to connect and Watching friendships blossum is pure magic. In June we are looking forward to meeting more communities in Western Australia and I know the team have many more planned, so please keep an eye out for email invitations and social media posts. This month saw the launch of season 2 of BCNA’s podcast series What You Don’t Know Until You Do: Unlimited with Clinical Psychologist Dr Charlotte Tottman. In just its first 24 hours, the podcast was listened to by 3,500 people, filling an unmet need, particularly for those on health psychologist wait lists, those living in remote areas and those who feel their post-treatment adjustment isn’t a priority in the mental health system. Across 10 episodes Dr Tottman uses her unique speciality in cancer-related distress and lived experience to identify, discuss and offer strategies on what she calls ‘FONEBO’ – fear of negative evaluation by others – and how it leans into many other concerns including anxiety, behaviour change, pain and partner perspective. Read more on page 11. In a wonderful full-circle moment, BCNA is heading back to Canberra in August where our advocacy journey began 25 years ago. We will be holding a national roundtable to bring together key policy makers, cancer sector stakeholders and consumers to develop a set of recommendations to highlight the need for routine collection and reporting of breast cancer stage and recurrence data across all states and territories. In 1998 the inaugural Field of Women was planted on the lawns of Old Parliament House, Canberra, at the launch of BCNA. Read more on page 12. This edition truly reflects this milestone year and what better way to show who we are and what we do – together. Sadly, there is still much to be done and we want you to know that we will be here to ensure all Australians receive the very best care, treatment and support. So if you need help, we are here.
PODCAST SERIES
STORIES
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Pink Bun 2023
What You Don’t Know Until You Do - Unlimited with Dr Charlotte Tottman
BCNA myself, I still find it incredible that it all started because our founder Lyn Swinburne dared to not only question a system that was not there for people with breast cancer,
6–13 Our People and 25 Years of Impact
14–15 Timeline
but then dared to do something about it. We asked Lyn to reflect on that journey and the achievements she is most proud of. Her passion to ensure we continue to drive change is still so palpable in these pages, particularly when she talks about BCNA’s first successful political campaign to have the drug Herceptin listed on the Pharmaceutical Benefits Scheme (PBS). It was the first group of women who were strong enough and united enough to make it happen, she recalls. It demonstrated that BCNA was influential and powerful and could bring about real change. And in 2023 that commitment and passion to influence and bring about change is as strong as ever. In this edition we will take you on our history so far to becoming a strong voice in influencing the health care system by using the power of lived experience to inform, influence and drive change. Our voice in action has led to several key reports and issues papers, including our State of the Nation report and Making Metastatic Breast Cancer Count , calling for improved treatment, support and care for Australians affected by breast cancer. Our story has also seen the building of a safe place where people can come for trusted and credible information, including podcasts, webcasts, the Online Network and My Journey. And, of course, our Helpline provides compassionate and practical support. In August this year we will be shining a spotlight on the impact of breast cancer at the Field of Women – BCNA’s most powerful and visible message. The statistics are overwhelming, but each silhouette makes its own statement about the real people who are impacted, highlighting the need to focus on the person diagnosed and their family, not the disease. On page 4 you can find out how you can stand with us at the MCG. This year’s Pink Bun campaign has been another remarkable success. Not only does it take the hundreds of franchisees to bring this campaign to life, it takes our communities generosity to make this a powerful Australian statement of good will. We cannot thank everyone involved enough. After 23 years this campaign stands out as one of the most successful and meaningful partnerships in the not-for-profit space. It’s also been great to see so many sports teams
16–17 Think Tank
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Workplace Giving and Tax Appeal
Getting through the first few weeks Managing stress (and mindfulness) Your new normal after breast cancer treatment Information Forums on-demand Port Lincoln Information Forum on-demand Warrnambool Information Forum on-demand Resources for people in rural areas Breast cancer information for people in rural areas Financial supports for people with breast cancer in rural and remote areas
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Pink Sports Day
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BCNA resources
Breast Cancer Network Australia Level 1, 293 Camberwell Road, Camberwell VIC 3124 1800 500 258 contact@bcna.org.au bcna.org.au Editor: Sophie Findlay Designer: Justin Dymott Contributors: Jeanie Watson, Lisa Berger, Mel Roome and Ruth Williams
Managing stress and improving wellbeing with mindfulness and meditation Prioritising me – setting healthy boundaries
Kirsten Pilatti Chief Executive Officer
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Breast Cancer Network Australia
bcna.org.au
Issue 95 | June 2023
News BCNA
Pink bun campaign 2023
STAND WITH US SUNDAY 20 AUGUST, 1PM, MCG That’s right! Breast Cancer Network Australia (BCNA) is excited to finally be able to announce the date of the 2023 Field of Women. After five years, we can’t wait to fill the MCG again and stand together in the shape of the Pink Lady to pay tribute to all those diagnosed and living with breast cancer, and to reflect on the personal impact breast cancer has on our community. The 2023 Field of Women will take place prior to the Round 23 AFL match between Melbourne and Hawthorn. Don’t miss out on the thrill of walking onto the ground in solidarity with thousands of others affected by breast cancer. The event is complemented by a free family festival that will take place outside the MCG in Yarra Park. Buy your tickets now at fieldofwomen.org.au FIELD OF WOMEN DATE ANNOUNCEMENT!
B akers Delight bakeries across Australia embraced the pink during this year’s Pink Bun campaign! The annual three-week campaign, run by our Foundation Partner Bakers Delight, raises generous funds for Breast Cancer Network Australia (BCNA). This year between 11 and 31 May, 100 per cent of all Fun Bun sales at Bakers Delight were donated to BCNA in support of all Australians affected by breast cancer. Our ambassadors, Donna, Holly and Kim, each shared their lived experience of breast cancer as a Bakers Delight franchisee, all highlighting the importance of support from their communities. You can watch Donna, Holly and Kim’s stories here . To all of those who visited Bakers Delight to buy a Pink Bun (or six!), thank you! Your support contributed to an incredible $2 million and still counting , to ensure BCNA can continue to provide information, support and a voice for the 20,640 Australians expected to be diagnosed with breast cancer this year.
MAKING METASTATIC BREAST CANCER COUNT BCNA is headed to Canberra to seek greater support and recognition of people with metastatic breast cancer In 1998, the inaugural Field of Twenty-five years later, BCNA is heading back to Canberra in August, this time to hold a national roundtable to highlight the need for the routine collection and reporting of cancer stage and recurrence data across all states and territories.
This is because they are literally not being counted consistently by our cancer registries. We must have this visibility in order to plan for, and invest in, this growing population with complex and unmet needs. This is why we are off to Canberra – with some of our consumer representatives and others with a lived experience – to make change. The routine collection of stage and recurrence data will also benefit those with early breast cancer as such data can help shed light on service demand and variations in care. We will have more details as we get closer to the national roundtable.
Women was planted on the lawns of Parliament House, Canberra, at the launch of BCNA. BCNA’s unstoppable advocacy, achievements and advancements made in support of Australians affected by breast cancer had begun. That year, following a public meeting in every state and territory, over 300 women converged on Canberra to discuss issues affecting people with breast cancer. An action plan was developed and formed the inaugural Making a Difference report. That passion for change has just grown stronger.
The roundtable will bring together key policymakers, cancer sector stakeholders and consumers to develop a set of recommendations for government. In October last year, BCNA released the issues paper Making Metastatic Breast Cancer Count , calling for national leadership and accountability to ensure those living with metastatic breast cancer are counted and made visible.
Incomplete data means those living with metastatic breast cancer are ‘invisible’ to health systems and policymakers.
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June 2023 | Issue 95
Breast Cancer Network Australia
bcna.org.au
Issue 95 | June 2023
PROUDLY SUPPORTING PEOPLE AFFECTED BY BREAST CANCER FOR 25 YEARS
INTERVIEW WITH BCNA FOUNDER LYN SWINBURNE
B CNA’s Founder, Lyn Swinburne AO, spoke to The Beacon about her pride in the organisation, its most significant achievements over the past 25 years, and about those who joined her in making it all possible. How proud are you of Breast Cancer Network Australia (BCNA)? My pride is off the scale, but I am also amazed and very emotional about how far we have come and the immense positive difference we have made to so many women and their families. Pride is just one emotion I have when I think about BCNA celebrating 25 years. Which achievements in BCNA’s history are you most proud of? I can think of over 100,000 reasons to be proud, but the first two I think of are being at the MCG in 2005 for the first Field of Women and BCNA’s role in getting Herceptin listed on the Pharmaceutical Benefits Scheme (PBS) in 2001. Seeing all the women in pink and watching them come down from their seats and onto the ground, that was an amazing feeling for me because of all the history that had gone before that moment.
Who would you like to acknowledge for playing a role in the success of BCNA? There’s a really long line of people I’d like to thank. We called it a network for a reason. The network was about all the individual people who came together to create it. Together, we brought about change. Together, we made a difference for women. Together, we built an organisation that’s strong and healthy and effective.
along the way, particularly Roger and Lesley Gillespie and the team at Bakers Delight.
I would particularly like to pay tribute to the women who stepped up in the early days, before we even really knew what advocacy was, and said, ‘Yes, I’ll be a part of this movement’. The women who were really sick at the time stand out in my mind. They had advanced disease and very limited time left in their lives. They chose to use a not insignificant part of those precious final months and years to help other women. I am also incredibly thankful for all the people who supported us
I can think of over 100,000 reasons to be proud, but the first two I think of are being at the MCG in 2005 for the first Field of Women and BCNA’s role in getting Herceptin listed on the Pharmaceutical Benefits Scheme (PBS) in 2001. – Lyn Swinburne AO
Lesley Gillespie OAM and Roger Gillespie OAM with Lyn Swinburne AO
When I was diagnosed with breast cancer, it felt like there was nowhere to go. I felt alone and very much isolated. Many were advising me on what to do and how I should cope, but they had no idea. BCNA supported me through my survivorship, and gave me the opportunity to make a difference for others. – Raelene Boyle AM, MBE, BCNA Ambassador
We had planted fields of Pink Lady silhouettes before then, but that first Field of Women at the ‘G was like we had brought the silhouettes to life. Not only was it a brilliant result that the drug Herceptin was listed on the PBS, but we also learned how to run a successful political campaign. The women in our network were strong enough and united enough to make it happen. It demonstrated that BCNA was influential and powerful and could bring about real change. In 1998, did you think BCNA would still be going strong today? I didn’t. To be honest, we were focused on fixing what was right in front of us rather than planning for the future, and it grew organically from there. The only thing that’s disappointing about BCNA still being here 25 years later is that breast cancer is still here too.
Lyn at hospital after her breast cancer diagnosis
Raelene Boyle AM, MBE and Lyn Swinburne AO
Field of Women silent walk in Adelaide, 2004
The first Field of Women in Canberra, 1998
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June 2023 | Issue 95
Breast Cancer Network Australia
bcna.org.au
Issue 95 | June 2023
PROUDLY SUPPORTING PEOPLE AFFECTED BY BREAST CANCER FOR 25 YEARS
B CNA is all about people, so in this BCNA through the eyes of our network – our members with a lived experience of breast cancer, families that carry on the legacy of their loved one, health professionals providing care, and other important supporters of our work. Read about key moments that have defined our network as we have grown into the organisation we are today, while also paving the way for what we will achieve in the future. special edition of The Beacon , we wanted to share the story of BEING A STRONG VOICE Our role in advocacy is critical to improving outcomes for all BCNA has been a leader in consumer-led advocacy in the cancer sector and paved the way for many other consumer advocates and organisations. Given breast cancer is a disease with such a widespread impact, BCNA has had the ability to galvanise a strong collective voice of people from all walks of life. BCNA’s advocacy for equity of access to all breast cancer drugs and tests began with a campaign for a drug known at the time as Herceptin (trastuzumab). Families were mortgaging their homes and selling their possessions to afford access to this life-prolonging drug. OUR STORY SO FAR
OUR COMMITMENT TO UNDERSTANDING THE REAL ISSUES
BCNA released the Financial Impact of Breast Cancer report, helping to highlight this key issue. We continue to work to reduce the cost of breast cancer by working with Cancer Council Australia, other cancer agencies and government. Some of our successes include Medicare rebates for MRI scans for young women, breast prostheses reimbursement programs, and lymphoedema compression garment subsidy programs. Importantly, ongoing events such as BCNA’s Think Tank create further platforms for discussions with consumers to help us understand the evolving issues affecting those with breast cancer, and prioritise and plan our ongoing efforts. OUR VOICE IN ACTION With so much to be done, our Policy and Advocacy strategy helps to focus our efforts. From July 2023, we will enhance our work to support ‘living well with and beyond breast cancer’ with one key focus being those living with metastatic breast cancer. Australia’s cancer registries do not routinely collect stage-at- diagnosis or cancer recurrence data. This means that we do not know how many people are living with treatable, but not curable, metastatic
If we were to estimate a previous average cost to patients of $50,000, this has potentially saved families a total of $1.6 billion. It has, literally, saved lives and livelihoods. – Kirsten Pilatti, BCNA CEO
We continue to seek insights from our network in lots of different ways, from travelling to rural and regional locations, to national surveys and partnerships with researchers. All this collectively contributes to an evolving national picture of the issues affecting those with breast cancer to ultimately help to improve outcomes. BCNA’s landmark State of the Nation report in 2018 aimed to map where progress had been made and where more work needed to be focused. The report – the biggest study of its kind for BCNA or any consumer group in Australia – was informed by a survey of over 10,000 of our members. We continue to leverage the findings of this report to inform our advocacy and create opportunities for partnership in the sector. WORKING IN PARTNERSHIP TO BRING ABOUT CHANGE The financial impact of breast cancer has been an ongoing issue since BCNA began. Out-of-pocket costs are often significant, particularly for people who have their treatment in the private health system. In 2017,
THE POWER OF LIVED EXPERIENCE TO INFORM,
In 2001, BCNA led the network to successfully lobby and work with government, health professionals and the suppliers to have the drug subsidised for people living with metastatic breast cancer; the real-life stories of those impacted were central to the success of this campaign. Access was granted, giving those with fewer treatment options renewed hope of more time with their loved ones. Responding to a developing evidence base, in 2006 BCNA led a second successful campaign to have the subsidy expanded to those with early breast cancer. As a result, more than 32,000 Australians have accessed trastuzumab. This advocacy set a precedent for strengthened consumer and clinician-led advocacy that has brought countless other breast cancer drugs onto the Pharmaceutical Benefits Scheme, with successes including Tykerb (lapatinib) in 2008 for HER2-positive metastatic breast cancer and Trodelvy (sacituzumab govitecan) in 2022 for triple negative metastatic breast cancer. Without government subsidy, these life-saving and life-prolonging treatment options would remain out of reach for many. For more information about BCNA’s advocacy work, visit bcna.org.au
INFLUENCE AND DRIVE CHANGE
V icki Durston with Andrea Smith at the launch of Making Metatstatic Breast Cancer Count, 2022
The establishment of BCNA’s Seat at the Table program in 2001 provided the opportunity to ensure the consumer voice is involved whenever there are decisions or discussions about breast cancer internationally, nationally or locally. This formal training program elevates consumer representatives to be more than just storytellers, and to represent the broader experience, and strategically influence research, policy and service provision not just in breast cancer, but across the health system. ‘Becoming a consumer representative also embodies connectedness, knowingness, humanness, and hope. I now have the privilege of representing every one of the 20,000+ women, men and families who will be affected by breast cancer this year, and every person still impacted by cancer years after finishing treatment. My voice now speaks for others in the hope that it creates improvements in patient experiences.’ – Jodie Lydeker, BCNA Consumer Representative BCNA provides a number of opportunities for people with lived experience to get involved. Find out more here.
breast cancer, leading to this group being ‘invisible’ to policymakers and health service providers, despite having significant unmet needs. Last year, BCNA released an issues paper, Making Metastatic Breast Cancer Count , which calls for improvements to the collection and reporting of cancer data so that we can advocate for improved services for this group and ensure they are ‘no longer hidden in plain sight’. ‘The release of the issues paper was a bold and clear statement from BCNA of its commitment to addressing the lack of data on metastatic prevalence in Australia. This work flagged to a lot of people with metastatic breast cancer, who perhaps did not think BCNA represented them, that the organisation is operating in this space and takes this issue seriously.’ – Andrea Smith, BCNA Consumer Representative living with metastatic breast cancer We know we still have much work to do to ensure that the voices of people with diverse experiences of breast cancer are heard. Our Lived Experience Reference Groups, including metastatic, LGBTIQ+, and rural and remote, support our advocacy work with their diverse real-world experiences.
Herceptin advocacy in action, 2006
State of the Nation launch, 2018
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June 2023 | Issue 95
Breast Cancer Network Australia
bcna.org.au
Issue 95 | June 2023
PROUDLY SUPPORTING PEOPLE AFFECTED BY BREAST CANCER FOR 25 YEARS
PROVIDING INFORMATION AND SUPPORT
B CNA knows that whole person and recognising their psychosocial, as well as clinical needs. Because of this, we communicate with our network in a variety of ways beyond just sharing the latest in clinical advice, including sharing the stories and experiences of our members. Your insights allow us to know firsthand where information and support is most needed. The way we provide information has adapted to respond to these needs amidst the ever-changing health landscape and evolutions in technology. SHINING A LIGHT In 1998, BCNA Founder Lyn treating breast cancer means more than just treating the tumour. It is about seeing the Swinburne needed a way to stay in touch with the network that was quickly growing, so she sat at her kitchen table and wrote the first edition of The Beacon . The newsletter’s name and purpose were the same – to provide a light through the darkness for people affected by breast cancer.
Today, this magazine continues to share your stories from around the network, and engage our members in conversations – whether about the latest in new drugs and treatments, advocacy wins, or upcoming events. The Beacon is distributed quarterly to over 80,000 subscribers and we are proud to offer this 95th edition! A TRUSTED SOURCE The trust and respect BCNA has gained over the years comes from our approach in translating the latest in clinical advice with a strong consumer lens and purpose. Since 2005, when we produced the first physical My Journey, each new iteration has evolved based on feedback from our network coupled with the latest health information and advice through strong partnerships with health professionals and the research sector. Today, My Journey is an app and website used by 24,000 people and contains tailored information based on your breast cancer diagnosis as well as other factors that may affect how you access treatment and support. Providing tailored information helps alleviate the ‘information overload’ experienced by many who are newly diagnosed, and ensures we are providing information that is both timely and relevant. INFORMATION PROVIDED HOW AND WHEN YOU NEED IT BCNA’s mission is to reach all Australians affected by breast cancer, in even the most isolated areas where we know access to care can be a challenge. Our suite
of digital resources, including webcasts and podcasts , helps people, particularly those living in rural and regional areas, to get the support they otherwise might not be able to access. Our website is a popular source of information and is visited by over 300,000 people every year. ONLY A PHONE CALL AWAY From the beginning, people have called BCNA for information and support, and to share their experiences. Our Helpline was compassionate and practical support to over 10,000 people every year, including family and friends of those diagnosed. ‘I feel heard, appreciated and not judged.’ – Helpline caller If you or someone you know has been diagnosed with breast cancer, or you’re a health professional looking for trusted resources, call BCNA’s Helpline on 1800 500 258 . PROVIDING SUPPORT IN MANY WAYS officially launched in 2001 and continues to provide In 2004, BCNA teamed up with Berlei to create the My Care Kit to provide a practical support to those who have undergone a mastectomy. My Care Kit is available free of charge to anyone in Australia who undergoes surgery for breast cancer. This year, we will deliver the 200,000th My Care Kit. For more information about My Care Kit and how to order yours, visit myjourney.org.au or call our Helpline on 1800 500 258 .
Everyone experiences shock when diagnosed, but as a man with breast cancer, there’s also a kind of stigma. A lot of men won’t talk about it, and I think suffer psychologically from the fact they have what’s known more commonly as a woman’s disease, which it’s not. I’ve tried to change that for other men through my work with BCNA, so other men don’t feel alone or like they can’t talk about it. – Harry, BCNA Member
Harry with his wife Yvonne
MEETING DIVERSE NEEDS Our growing network has helped us reach more people, hear their diverse experiences, and better understand and address their needs. We offer tailored resources for men with breast cancer, people living with metastatic breast cancer , First Peoples , people from LGBTIQ+ communities , those from culturally and linguistically diverse backgrounds and young women . SHARING EXPERTISE BCNA is fortunate for the many health professionals who share their expertise with our network. Our podcast series Upfront About Breast Cancer – What You Don’t Know Until You Do with clinical psychologist and breast cancer survivor, Dr Charlotte Tottman, helps address the gap in access to psychosocial support for those with breast cancer, especially for those in rural and regional areas who may experience further challenges in accessing these services. Listened to over 63,000 times since
being released, the first season covered many topics including dealing with the initial shock of diagnosis, impact on sexuality and intimacy, and fear of cancer recurrence. A second season has just been released. ‘The first series revealed a huge demand for lower-level ongoing support for those with chronic illness. It really filled an unmet need for people on waitlists for
psychological support, people living in rural and regional areas and even those who felt their post-treatment adjustment wasn’t a priority in the mental health system.’ – Dr Charlotte Tottman, Clinical Psychologist Season 2, What You Don’t Know Until You Do: Unlimited , is available now via bcna.org.au or wherever you get your podcasts.
ISSN 1834-5921
RAELENE AND LYN A dynamic duo
Stuart Diver THE INSPIRATIONAL
20 YEARS OF IMPROVEMENTS IN BREAST CANCER TREATMENTS
MANAGING LYMPHOEDEMA
METASTATIC BREAST CANCER Living well with
BREAST CANCER NETWORK AUSTRALIA’S MAGAZINE | ISSUE 82 | APRIL 2018
20th Anniversary edition of The Beacon
Dr Charlotte Tottman (right) with Kellie Curtain at the SEN recording studio
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June 2023 | Issue 95
Breast Cancer Network Australia
bcna.org.au
Issue 95 | June 2023
PROUDLY SUPPORTING PEOPLE AFFECTED BY BREAST CANCER FOR 25 YEARS
T he Field of Women is BCNA’s most powerful and visible message and brings the statistics of breast cancer to life. In 1998, to launch BCNA, an inaugural Field of Women was planted on the lawns of Parliament House in Canberra with 10,000 Pink Lady silhouettes that represented the women diagnosed that year and 2,500 white silhouettes to remember the women we would lose. Since then, Mini-Field of Women tributes have been held in hundreds of locations across the country to raise awareness of breast cancer and provide support to communities. In 2005, we brought the Field of Women to life on the biggest stage – the MCG in Melbourne. Over 11,500 people wearing pink ponchos formed the Pink Lady silhouette in a moving and inspirational tribute. This moment catapulted BCNA into the spotlight and united the network in a powerful and meaningful way. CONNECTING PEOPLE
This month we are holding two information forums – Karratha and Bunbury, WA. To register visit bcna.org.au PARTNERING FOR CHANGE BCNA’s committed, long-term corporate partners have expanded our reach and provided the funding we need to keep innovating. Our Foundation Partner, Bakers Delight, and Major Partners, Berlei, Sussan and Red Energy, continue to support us because they truly believe in what we do and are committed to helping us support everyone affected by breast cancer. ‘We have franchisees and customers who have been diagnosed with breast cancer, so our connection to BCNA goes well beyond our partnership. Our relationship has thrived for more than 20 years because it’s not dependant on just one or two people – it really is a network of people helping each other.’ – Lesley Gillespie OAM, Bakers Delight Co-Founder ‘In 25 years’ time, my granddaughters will be reaching an age where breast cancer may come into their lives. If breast cancer is still here, if it hasn’t been eradicated or if we haven’t found a way to prevent it from happening, then I would hope that BCNA is still a haven that can be relied upon.’ – Lyn Swinburne AO, BCNA Founder ‘I want to see everyone, not just those with the strongest voices, getting the best care. I also want BCNA to continue to help those diagnosed to find each other and to feel a sense of shared understanding through the connections we foster.’ – Kirsten Pilatti, BCNA CEO
‘It’s incredibly powerful to stand together alongside others and, whilst acknowledging those who haven’t made it, say, “I’m grateful to be alive and stand here and celebrate.”.’ – Lyn Swinburne AO, BCNA Founder This year’s Field of Women will be held on 20 August. Buy your tickets at fieldofwomen.org.au CREATING MEANINGFUL CONNECTIONS Our network is formed and strengthened by connecting people and communities affected by breast cancer. Our members benefit from connecting with others who understand what they are going through. Whether it’s through our Online Network , attending a BCNA Information Forum or reading personal stories in The Beacon , these connections can make a real difference to people’s experiences and make them feel they are not alone. To join the Online Network, visit onlinenetwork.bcna.org.au
The amazing members were so open and welcoming. They were honest with
their support, advice and suggestions. This network saved me from being in a big black hole feeling all alone and helpless. I have made life- long friends. – Online Network user
BCNA’s Living Well with breast cancer Information Forums
COMING TOGETHER TO CONNECT, LEARN AND SHARE Connecting with our network face to face around the country is an important way that we provide information and support and hear firsthand our members’ experiences. This has been the case since 1998, when 300 women from across Australia gathered at Old Parliament House in Canberra for the first National Breast Cancer
Conference for Women. Over the past 25 years, BCNA’s conferences, summits and information forums have provided face-to-face support to over 18,000 people. ‘Leading up to the Information Forum in Port Lincoln, I hadn’t felt emotionally supported since my diagnosis. Listening to others share their stories, even though they were on different paths, allowed me to feel that my feelings and emotions were normal.’ – Rachael, BCNA Member
THE RIPPLE EFFECT Local community organisations are often the heart of a personal support network that extends beyond the immediate family, close friends and medical treatment team throughout someone’s breast cancer experience. For 25 years, local community groups have been connecting with BCNA for ways to show and extend support to those around them. Some host PLAY4BCNA Pink Sports Days or Pink Lady events. Others participate in activities like fun runs or head shaves. Every dollar raised for BCNA helps us continue to be here every day for those who need us. To find out more about how your community can get involved to support BCNA and those around you, visit bcna.org.au
THERE IS SO MUCH MORE TO DO!
BCNA remains committed to being a strong network that continues to evolve in response to the needs of those affected by breast cancer in Australia. We know that in another 25 years’ time, this may be very different, in anticipation of further advances in prevention, improved services to support living with and beyond breast cancer, and innovative new ways that we access health information. We asked BCNA’s Founder and CEO for some thoughts on where they see BCNA in 25 years’ time:
2014 Field of Women, Melbourne
Kirsten Pilatti and Lyn Swinburne AO
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Breast Cancer Network Australia
bcna.org.au
Issue 95 | June 2023
HISTORY OF BCNA
BCNA releases its issues paper Making
Lyn Swinburne AO is diagnosed with breast cancer and subsequently begins to lobby for enhancements to treatment and support for other women affected.
BCNA successfully advocates to have Herceptin listed on the Pharmaceutical
Metastatic Breast Cancer Count: Living in Plain Sight . Trodelvy is listed on the PBS for people living with triple negative metastatic breast cancer.
BCNA publishes the Men Get Breast Cancer Too booklet to highlight the impact the disease has on men.
BCNA partners with Berlei to launch the My Care Kit distributed free to women who undergo a mastectomy.
BCNA begins its powerful partnership with Bakers Delight .
Benefits Scheme (PBS) for women with early breast cancer.
BCNA’s landmark State of the Nation report is released.
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Breast Cancer Network Australia (BCNA) is officially launched at the first National Breast Cancer Conference for Women in Canberra and the inaugural Field of Women is planted.
BCNA officially establishes a Helpline. BCNA successfully advocates to have Herceptin made available for people living with metastatic breast cancer.
The Field of Women is brought to life at
BCNA launches a peer- to-peer Online Network to provide people with a safe space to connect with others going through a similar experience.
BCNA successfully advocates for expanded early access to superannuation. Red Energy becomes a Major Partner.
BCNA releases tailored resources for people from First Nations and LGBTIQ+ communities diagnosed with breast cancer.
BCNA's continued advocacy sees Enhertu and Keytruda listed on the PBS for people living with metastatic breast cancer.
the MCG. BCNA launches the My Journey Kit. Sussan becomes a Major Partner.
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Breast Cancer Network Australia
bcna.org.au
Issue 95 | June 2023
Jodi Steel
Mary Macheras-Magias
Stacie Piper
THE ABC OF BCNA In BCNA’s 25th year, Consumer Representative Jodi Steel shared her reflections on BCNA’s acronym.
B is still for breast cancer but so much has changed – treatments, how many people are diagnosed (although we don’t have accurate numbers of people with metastatic breast cancer) and the landscape is very different.
C is for connection with other consumers, consumer representatives, BCNA staff, health professionals and other organisations in the breast cancer ecosystem and with breast cancer researchers.
N is for the network of BCNA’s members, CRs,
A is for Australia . Who is visible and who is invisible in our health care system, and even within BCNA. It helps us to keep questioning how we advocate to do more across ‘A’, especially where access to optimal breast cancer care is difficult or limited.
research organisations, medical professionals and other breast cancer organisations.
THINKING, SHARING, CONNECTING AT THINK TANK 2023
I n February this year, Think Tank event in Melbourne, bringing together 22 BCNA Consumer Representatives (CRs) from across Australia. It was two lively days of connection and sharing, debate and discussion, creative ideas, listening and celebration. BCNA’s Policy & Advocacy team hosted its second Think Tank 2023 celebrated the value of consumer voices, explored building the capacity of BCNA’s Seat at the Table program, and identified opportunities for engagement with CRs in projects across the organisation. BCNA’s CEO Kirsten Pilatti officially opened Think Tank 2023 with reflections on BCNA’s values and how the Think Tank provides an opportunity to see those values in action: ‘We are stronger together, we speak up, we are courageous, we are inclusive, we care and show empathy to all those we encounter,’ Kirsten said. In a Welcome to Country,
Wurundjeri and Dja Dja Wurrung woman Stacie Piper spoke of the importance of storytelling, language and connections to Country and between each other. Hopes and expectations for the two days were to connect, learn, be inspired, see progress, be heard and acknowledged and to contribute. ‘A gathering of creative, committed,
of people affected by breast cancer were under-represented in Australia. ‘At the first conference in 1998, it was clear that we wanted to be seen and heard, not just storytellers,’ said Vicki Durston, BCNA’s Director of Policy, Advocacy and Support Services. ‘Diverse voices bring about diverse thinking and fundamental change,’ she said. ‘Over the next two days we will be exploring how we continue to be a strong voice in an ever-changing world and how we reach the hardly-reached to ensure equity and access to care, treatment and support for all people with breast cancer.’ Researchers and CRs co- presented research projects highlighting the value of CRs as partners and the contribution of the lived experience. ‘I needed people who had been there,’ said Dr Anna Singleton, University of Sydney, of her research project EMPOWERSMS.
Why are events like the Think Tank important for ensuring everyone in Australia affected by breast cancer receives the best treatment, care and support? The Think Tank is extremely important in capturing the voices of people with lived experience. It is this firsthand knowledge which adds richness and authenticity to ensuring that people across Australia receive the best treatment, care and support. What is your reflection on 25 years of BCNA? And what are your hopes for the next 25 years? I recall stumbling upon a BCNA display in the Treasury Gardens in Melbourne in early 1999. It was a message on a Pink Lady that made a huge difference to me. It was a message from a young boy to his mother. It was the first time I felt connected and not so alone. I knew for the first time that there was another young woman out there experiencing the same things that I was. I hope that BCNA continues to connect and support everyone and that treatment and survival continue to improve.
Is there an activity that you have been involved in that stands out for you? I have been lucky enough to work on many projects. The one I am most proud of is the development and implementation of the clinical guidelines for the management of young women affected by breast cancer. Do you think BCNA’s advocacy for better care, treatment and support for those affected by breast cancer has made a difference? How different would the experience be now, compared to the one you had? The experience for women going through breast cancer has changed significantly. The introduction of breast care nurses, sentinel node biopsy and all the amazing resources, such as BCNA’s My Journey resource makes a difference. I think women feel supported and are seen. My experience the second time round was vastly different. I felt part of a community and not as alone and isolated as I did the first time round.
We asked Mary Macheras-Magias for her reflections on being a BCNA Consumer Representative and the role of BCNA’s advocacy over the past 25 years for better care, treatment and support for Australians affected by breast cancer. Why did you become a BCNA Consumer Representative? I wanted to make a difference in the care of young women with breast cancer. In 1998 when I was diagnosed, any conversation about fertility, for example, was often initiated by the patient. You really had to be your own advocate and I knew that was not good enough. It was also a time when getting a diagnosis as a young woman was difficult. Symptoms were often ignored as something else, and we weren’t really encouraged to come back for follow-up, even if symptoms persisted. This led to too many young women at the time being diagnosed at a later stage.
passionate and intelligent consumer reps who will be listening and talking, sharing
their ideas. Expecting some great conversations and ideas coming out of the Think Tank,’ penned one CR. A BCNA staff member wrote, ‘I love connecting with our consumers at any opportunity. It’s a great way for us to learn about their experiences or thoughts and for them to feel great confidence in what it is we are doing and the ways in which we are doing it. I hope events like this align us all in many ways.’ One word was used by a group of CRs to sum up day one: Engaging. And for staff the word was: Inspiring. Attendees heard that BCNA was founded at a time when the voices
‘Clinicians have a different perspective than patient
perspective – that is why consumer voice is important within treatment and care.’
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June 2023 | Issue 95
Breast Cancer Network Australia
bcna.org.au
Issue 95 | June 2023
FOCUS ON REGIONAL BARRIERS
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Liz, from Longreach Queensland
Heathmont Jets
Wenona School
E veryone should have access to the best care, treatment and support no matter who they are or where they live. We know that when people living in rural and regional areas are diagnosed with breast cancer, they are often more likely to experience challenges accessing the treatment and care they need. Some people must travel hundreds of kilometres for appointments, tests and treatment which can lead to higher out-of-pocket costs. Many people in rural and regional areas experience lack of access to surgeons, which reduces treatment options unless people travel. Some people have never seen a breast care nurse or had access to supportive care services. For those who do travel long distances, it means being away from home, family, community, and a familiar support network. In the heart of outback Queensland, nestled off the mighty Thompson River, lies the small, quiet, historic town of Longreach. It’s a place that Liz, Brian and their two children happily call home. It’s also 600km from the nearest city.
Usually, Liz embraces this remoteness. But when she was diagnosed with breast cancer last year, it added extra challenges to accessing treatment. ‘Two plane flights, 15 telehealth appointments, three hospitals and 12,000 km travelled. That was a bit tough, having to leave my family for weeks at a time.’ Liz’s experience isn’t a one-off. In fact, there are many people in rural and regional Australia who can’t get the support they need close to home. Donations to BCNA’s Tax Appeal will help us continue to advocate for: • increased subsidies available under state and territory Patient Assisted Transport Schemes (PATS) to help reduce the financial burden of travelling long distances for treatment • further investment in telehealth appointments to give those living in rural and regional areas better access to follow-up and supportive care
• greater implementation of ‘tele-trials’ to improve access to clinical trials for people living regionally • improved access to breast reconstruction, and transparency around options and waiting lists • improved equity of access to tests and treatment, from diagnostic imaging through to breast reconstruction. • increased supportive care We’d appreciate your support so that we can continue to advocate for equal access to treatment and care for everyone diagnosed with breast cancer, no matter who they are or where they live. For more information or to donate before 30 June, visit BCNA’s Tax Appeal website . services, including mental health support that is often difficult to access for those living in rural and regional areas.
De La Salle Football Club
Belvedere Breakers
Throughout the month of May, BCNA invites sporting organisations across the country to PLAY4BCNA and show support for Australians affected by breast cancer. Here are just a few of the highlights from over 400 events and more than 1000 clubs that participated . To all of our Pink Sports Day hosts THANK YOU!
Hockey Victoria
Harmersley Carine Amateur Football Club – raised over $7,000. Janine and Alexis Lindsay shaving and dying their hair PINK
NBL1
m i
Did you know you can also support BCNA through your employer? Many organisations offer their employees a workplace giving program, where you can make regular contributions through your salary to BCNA. You can give as much or as little as you like, and because your donations are pre-tax, you will receive the tax benefit immediately, rather than having to wait until the end of the financial year. Your employer may even choose to match your donation, meaning your impact will be doubled.
Morwell Football Netball Club
Nunawading Netball Association
BCNA Foundation Partner
BCNA Major Partners
To learn more, visit bcna.org.au/donate/workplace-giving-program
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June 2023 | Issue 95
Breast Cancer Network Australia
bcna.org.au
Issue 95 | June 2023
HOW BCNA CAN SUPPORT YOU
HELPLINE If you or someone you know has been diagnosed with breast cancer, call BCNA’s free and confidential Helpline on 1800 500 258 or via email at helpline@bcna.org.au MY JOURNEY My Journey is a free information resource that provides you with reliable and up-to-date information tailored to suit your situation. Download the My Journey app or visit myjourney.org.au ONLINE NETWORK Connect with others who understand what you’re going through on BCNA’s online network. Join at onlinenetwork.bcna.org.au INFORMATION FORUMS BCNA presents Information Forums across rural and regional Australia for people diagnosed with breast cancer and their support people. Hear about upcoming events at bcna.org.au DIGITAL RESOURCES BCNA has a range of digital resources covering a variety of topics that share insights from health professionals and those with a lived experience and provide access to up-to-date information. Listen or view at bcna.org.au PODCAST LIBRARY Upfront About Breast Cancer provides advice, stories and support. Listen via bcna.org.au or wherever you get your podcasts. MY CARE KIT My Care Kit is available to those who undergo surgery for breast cancer and contains a specially designed Berlei bra and soft form/s, provided through a partnership with Berlei. Contact BCNA’s Helpline .
HELPLINE 1800 500 258 BCNA.ORG.AU
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