ISSN 1834-5921
BREAST CANCER AWARENESS MONTH Living well your way
STAYING FLAT AND FEELING STRONGER
BEYOND BREAST RECONSTRUCTION
ask the expert MANAGING MENTAL HEALTH AFTER DIAGNOSIS
COVER STORY
WAVES IN CANBERRA Making metastatic
A UNIFYING POWER
BREAST CANCER NETWORK AUSTRALIA’S MAGAZINE | ISSUE 96 | OCTOBER 2023
LISTEN, WATCH, READ
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Letter from the CEO
NEWS
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BCNA News
STORIES
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Connecting with our Community
PODCAST SERIES
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Finding Inner Strength
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Carla’s Cancer Experience
What You Don’t Know Until You Do – Unlimited with Dr Charlotte Tottman
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Ask the Expert: Managing Mental health after diagnosis
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A Unifying Power
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Making metastatic waves in Canberra
BCNA WEBSITE Information and Resources hub Exercise and staying fit Healthy eating
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From Fighting to Living
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Living well with walking
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Staying flat and feeling stronger
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Beyond breast reconstruction
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Berlei supports BCNA
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Walk or run for those affected by breast cancer at Carman’s Fun Run!
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PINK TRADIE IS BACK!
Ask the Expert: Understanding and managing pain with metastatic breast cancer
20 How BCNA can support you
Priortising me – Setting healthy boundaries
Editor: Carissa McQualter Designer: Justin Dymott Contributors: Jeanie Watson and Anna Malbon
INFORMATION FORUMS Darwin Information Forum on-demand Karratha Information Forum on-demand Bunbury Information Forum on-demand
Breast Cancer Network Australia Level 1, 293 Camberwell Road, Camberwell VIC 3124 1800 500 258 helpline@bcna.org.au bcna.org.au
CONNECTING WITH OUR COMMUNITY
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Breast Cancer Network Australia
Letter CEO FROM THE
O n Sunday 20 August at the MCG, as thousands of people affected by breast in our network. That iconic image of the Pink Lady is such a poignant symbol of the power of BCNA’s voice and demonstrates the connection and platform that we provide all those affected by breast cancer. Walking through the Mini-Field of Women outside the MCG, amongst the 3,500 Pink Lady silhouettes, I greeted families I met in 2006 when I began at BCNA alongside those who recently connected to the network. Our founder Lyn Swinburne spoke about how 25 years ago there was no real support for people diagnosed with breast cancer, which was why she founded BCNA. Hearing how grateful Lyn was that we are continuing to live out the dream she had was a powerful moment. Building on her intention of being the voice for those affected by breast cancer will be something we always carry through as an organisation, especially as we become even more active in influencing the health care system. On that note, we were proud to take our voice to Canberra in August for BCNA’s Making Metastatic Breast Cancer Count Roundtable with key cancer stood together on a sunny Melbourne day for Field of Women, I took pause to feel truly proud and reflect on the strength policymakers, cancer organisations, and health and data experts to advocate for a national cancer registry. Those living with metastatic breast cancer in Australia are not consistently counted – if you are not counted, you are not seen by the health service providers and policymakers who plan cancer services and support. At the core of what we do is bringing the right people together to find solutions. The next day we held a breakfast panel discussion with the Parliamentary Friends of Women’s Health at Parliament House. Read more from BCNA Consumer Representative Lisa Tobin, who shares her experience living with metastatic breast cancer and what being counted means on pages 12 and 13. October marks Breast Cancer Awareness Month and this year’s theme ‘Living Well, Your Way’ is reflected in this edition through powerful personal stories. Our member Carla speaks of her experience with mental health and Kate shares her decade wait for a breast reconstruction, while Grace discusses her decision to remain flat after a mastectomy and Paul relays his journey with metastatic breast cancer.
Coming back to that idea of sharing our voice, we’d love to hear yours! Please keep an eye on your inbox, as we will be sharing the BCNA member survey. This is designed to help us better understand how you use and interact with our services and resources. Your responses will help to ensure we continue to deliver the best quality information and support. We also know that when people are consulted and engaged in decisions that affect them, outcomes improve significantly. For this reason, BCNA supports First Peoples having a considered and permanent voice on decisions that impact them. Our Board has made a statement in support of the Voice referendum which can be found via the link below. You may have noticed a new look and feel to our website ( bcna.org.au ). While things may not be where you’re used to finding them, we’ve modernised our services and support to make your experience easier and more intuitive moving forward. Don’t hesitate to reach out to the Helpline with any questions. Enjoy this edition, which I believe really highlights the strength, connection, and incredible personal stories that exist within our network. Our 25th year is a milestone we are proud of and an opportunity to reflect on how much we have achieved – while also appreciating the incredible community we continue to build. Thank you for your continued support and please remember to reach out – we are always here.
Kirsten Pilatti Chief Executive Officer
To find out more about BCNA’s position in support of a First People’s Voice, please click here
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Issue 96 | October 2023
News BCNA New treatments positive breast cancer, will be added to the new system in three tranches – September 2023,
Consumer Representatives at BCNA’s Seat at the Table (SATT) program.
Reports of these delays are deeply concerning, which is why BCNA has called for transparency to gauge the true extent of the problem. Read more here . New BCNA Consumer Representatives We are delighted to welcome our 16 new Consumer Representatives (CRs) who joined BCNA’s Seat at the Table (SATT) program in June. After completing an eight-week online training program, the group joined us in our Camberwell office for a day-and-a-half of interactive workshops and to meet the other new CRs. We wish the new group well in their roles as they support our advocacy team in their work improving access to treatment,
recommended for subsidy Last month BCNA welcomed a decision by the Pharmaceutical Benefits Advisory Committee (PBAC) to recommend a crucial drug – Keytruda – to treat early- stage triple negative breast cancer (TNBC) for a government subsidy. You can read more about recent PBAC outcomes here . If you have any questions about Keytruda, or other new breast cancer treatments, speak directly to your treating team.
March 2024 and September 2024. Although not in the first tranche, BCNA does not yet know when each of the five breast cancer medications will move to the 60- day dispensing system. Read more here . BCNA advocacy a voice for change in Queensland Twenty-five years into our journey, advocating for better access to care, treatment, and support for people with breast cancer is as important to BCNA’s critical work as it ever was. Just last month we made our voice heard in response to an alarming report that people in Queensland are waiting months for test results to confirm breast cancer. They are then facing further delays for treatment after a diagnosis.
Pharmacy prescription changes on the cards
Five hormone-blocking therapies are among 325 medications on the Pharmaceutical Benefits Scheme (PBS) moving from 30-day to 60- day dispensing. The medications, which are used to treat hormone receptor
support, and care for those affected by breast cancer.
We want to hear from you!
In September, BCNA hosted co-design workshops involving CRs and Lived Experience groups. These were designed
• Better tailor information that can support treatment, recovery, and quality of life. • Ensure we reach as many people as possible across diverse communities. • Identify future policy and research opportunities, which will align with Australia’s first cancer plan, due for release later this year. Please keep an eye on your inbox or text messages for more information about this survey.
This survey will guide our priorities and ensure we
continue to deliver the highest quality information and support to our members. The outcomes from the survey will help to: • Improve how BCNA connects with people who have a lived experience of
to shape our upcoming national member survey.
In partnership with researchers from the University of Sydney and representatives from our consumer groups, we are conducting a national member survey to better understand how people affected by breast cancer use BCNA’s services and resources.
breast cancer, including those newly diagnosed each year and living with metastatic disease.
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Breast Cancer Network Australia
CONNECTING WITH OUR COMMUNITY
T his year we have had the pleasure of travelling to rural and regional locations across Australia to host Living Well Information Forums, in Port Lincoln, Warrnambool, Darwin, Bunbury and Karratha in WA, and Coffs Harbour. What is an Information Forum, you ask? These are events designed to provide up-to-date and relevant information about breast cancer to those in regional and rural areas. They include presentations by health professionals who are experts in their fields. Common topics include current and emerging treatments, lymphoedema, strategies to enhance physical and emotional wellbeing, alongside a rundown of BCNA’s services and resources. You can view presentations from past Information Forums, covering a range of topics here . They are not a one-size-fits- all, we develop each event program after a pre-event survey with local BCNA
members to ensure information presented and discussed is tailored to their community. Beyond the educational aspects, these events aim to provide the opportunity to connect and network with others – we have seen many friendships blossom over the years! We often include a panel discussion with local BCNA members, which facilitates the sharing of stories and experiences. So, what do attendees say? ‘It was a fantastic day full of very valuable information.’ ‘It was a great mix of topics – blown away.’ Our Information Forums are at the heart of what we do at BCNA, because they allow our network to come together, while also providing support and education. Hearing about the experiences, challenges, and needs of those affected by breast cancer in various communities allows us a broader understanding of how we can better shape our services and support.
We are excited to be touching down for our Mission Beach Information Forum on Tuesday 24 October. To find out more and to register, click here .
Are we coming to a town near you?
We are back on the road in 2024: Murray Bridge - 6 March Devonport - 30 April Hobart - 2 May Alice Springs - 19 June
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Issue 96 | October 2023
STRENGTH FINDING INNER
M y mammogram when I made the appointment and hung up the phone, I felt a pat on the back. I’m from Swan Hill and had to travel two-and-a-half hours to have my mammogram in Bendigo. Following the X-ray, I could sense something wasn’t right. After I was diagnosed, I named my reminder letter sat around for four months. It sounds a little bit spooky, but tumour Elvira, after a late-night television host of horror movies I watched when I was young. At the time, I was caring for my mentally ill son and my parents. My husband had his own issues to deal with and I was the sole breadwinner. I just needed to be well. From day one, I just wanted to have both boobs off. Instead, my treatment team kept wanting to cut out bits. After they couldn’t get a clear margin, they agreed to a mastectomy. My beautiful breast care nurse advocated for me and helped me get an appointment at St Vincent’s in Melbourne. I had to see a psychologist about the
double mastectomy to prove I was of sound mind. I was asked how my husband felt about it. I said, “They’re not his boobs. It’s nothing to do with him. It’s my body!” They finally agreed, but after the operation, I developed an infection and ended up back in hospital. Over six days, I had three operations. Throughout it all, I was pretty much alone, even though I had lots of people around me. You find inner strength. My kids are my strength. I never complained. I just bottled it up until I could speak to my breast care nurses in Swan Hill, Bendigo, and Melbourne. I want to help others avoid the crap parts of my experience. In Bendigo, they gave me a brochure and said, “this will be your bible on your journey” . It was very good, but it was just about services in Bendigo. I’m the community representative for the Cancer Advisory Group in Swan Hill. I suggested we come up with our own breast cancer bible for Swan Hill, which we did. If I can help one person, my journey has meant something. If I met someone newly diagnosed today, the first thing I would do is
offer them my phone number and say that no journey is the same. Loretta’s lessons for life after breast cancer: • You find out who your true friends are and what’s most important to you • You know what not to waste time on • You definitely have a different outlook on life and cherish the special moments • You find strength you didn’t know you had • The old saying, if you don’t laugh, you’ll cry, is true • Anyone who looks after you on your journey is very special. Not everyone can • Use your experience to help others • Go to support groups – the people you meet there will understand what you’re going through. Our theme for this year’s Breast Cancer Awareness Month is ‘Living Well, Your Way’ and how that looks different for everyone. Find out more about the campaign here .
This October, Sussan have launched their latest Breast Cancer Network Australia (BCNA) collection with a generous portion of the proceeds from each purchase going to support BCNA. This thoughtfully designed collection includes an Australian Cotton Waffle Gown, matching Satin Pink and new Pink Floral Pyjamas and their popular Pink Roll Cuff Tee. To take a closer look, visit the Sussan team in store or online .
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Breast Cancer Network Australia
Carla’s Cancer Experience UNPLUGGED
A t 38, my world was ripped apart. Triple negative breast cancer. Next minute, I’m having my breasts taken off, then I’m having IVF, then chemo. I didn’t really have time to comprehend what was going on, let alone ask questions or get support. Suddenly, I had no idea what the future held, but I knew I was no longer able to continue on the path I thought I was on. Ten years later, I’m still struggling with that. When I finished chemo in April 2013, I tried to go straight back to work but I didn’t have anywhere near the stamina I used to have. Thankfully, I had a good income protection insurance policy. Some days it was difficult to leave the house – to go out with no hair, no eyelashes, no eyebrows, and no boobs. I was conscious of people looking at me, knowing what I was going through. I wanted to talk about this and figure out how to deal with it. That’s why I set up my Facebook page, Cancer Unplugged – to share my experience and connect with others. Over the years, I’ve struggled to find my normal again. I had to wait two years to begin the reconstruction process. After six-and-a-half years and multiple surgeries, I have breasts that my surgeon and I are almost happy with, but I still struggle with body dysmorphia. When I was 41, after a scan showed something not quite right in the walls of my uterus and a genetic mutation on the BRCA gene, I had a preventative full hysterectomy. I had to decide what to do with the eggs I’d frozen. I couldn’t use them myself and because I’d had cancer, donating them wasn’t an option, so I had to terminate them. That still breaks my heart.
The road has been pretty bumpy. I don’t use the word ‘journey’ for my experience because I personally believe a journey is meant to have an ending, and generally a happy one. For me, it’s just been an ongoing nightmare with one thing after another. I’ve been diagnosed with PTSD related to the cancer. Throughout it all, BCNA’s website has been really helpful and, eventually, I had some counselling through Cancer Council. Starting to cycle and exercise saved my life. It’s like my meditation and, over the years, I’ve done some big rides, including the Ballarat 100-mile Classic, which raises money for cancer research. I tend to hibernate in October because that’s the month I was diagnosed. Breast Cancer Awareness Month tends to be awash with pink, so one year I shared photos on my Cancer Unplugged Facebook page of my scars and drains hanging out because I wanted people to see the reality of breast cancer. My advice for someone newly diagnosed would be to find someone the same age as you who’s had breast cancer and talk to them. Ask them questions and find out what’s helped them. And don’t Google – lol! If you’re struggling with your mental health, find someone to talk to and don’t give up on getting help. Contact BCNA, use their online resources, or find a local breast cancer support group. Years ago, after my chemo, I bought myself a campervan because I’d always wanted to travel. It was my gift to myself. Finally, I’ve packed up the dogs and I’m on the road on my big adventure through Central Australia and down the west coast. Hopefully this is my chance to reset, stop feeling stuck, and make some future plans.
This year our Breast Cancer Awareness Month theme is ‘Living Well, Your Way’, which is designed to recognise that many people struggle to ‘live well’ following a diagnosis of breast cancer and that a quality lifestyle looks different for different people. Carla highlights the role exercise has played for her, and there is tangible evidence of how exercise can improve the quality of life and emotional wellbeing of cancer survivors. Throughout Breast Cancer Awareness Month, we will share resources about how exercise and other types of support can help you to live well, your way BREAST CANCER AWARENESS MONTH Living well your way
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Issue 96 | October 2023
COVER STORY
ASK THE EXPERT
MANAGING MENTAL HEALTH AFTER DIAGNOSIS
O ctober is the with Clinical Psychologist Dr Charlotte Tottman to find out how a breast cancer diagnosis can affect a person’s mental health and how and when to seek support. Q: HOW CAN A BREAST CANCER DIAGNOSIS AFFECT SOMEONE’S MENTAL HEALTH? A: The two most common presentations I see following a cancer diagnosis are adjustment and anxiety. awareness month for both breast cancer and mental health. The Beacon sat down After a cancer diagnosis, it’s normal to struggle through a period of adjustment as you come to terms with change. How you navigate these changes can depend on who you are as a person, your previous experience of adversity, and your resilience. Anxiety is another common and normal response to a diagnosis. In general, anxiety is worrying about the future and fearing things that haven’t happened. A cancer diagnosis naturally heightens anxiety because the future no longer seems certain. Anxiety comes in many forms. There are at least 12 different types of anxiety when it comes
Q: AT WHAT POINT SHOULD SOMEONE SEEK PROFESSIONAL SUPPORT FOR ANY MENTAL HEALTH ISSUES THEY’RE EXPERIENCING? A: Generally, I recommend seeking help if your anxiety or struggle to adjust is getting in the way of your functioning, impacting your sleep or relationships, or causing you a high level of distress. Cancer treatment itself can affect your normal functioning, so ask yourself, “Am I struggling because of my mental health or my physical health?” You may also be experiencing emotional isolation, where you feel like no one else understands what you’re going through. Your GP can help assess where you are in terms of your struggle. If you have a pre-existing mental health experience and/ or an ongoing relationship with a therapist, I strongly recommend you start with them. You can also see a psycho- oncologist or clinical psychologist. A therapist can offer a safe environment where you can speak in an unfiltered way to help you feel heard, seen and validated. Talking to others who have a similar experience can also be valuable in helping you feel understood.
to a cancer diagnosis. You can learn more about these by listening to the first episode, A Mixed Dozen, in Season 2 of the Upfront About Breast Cancer – What You Don’t Know Until You Do podcast series. An appropriate level of anxiety can be a good thing because it helps you to develop strategies to deal with the physical, practical, or emotional challenges you’re facing. Q: WHAT ARE SOME OF THE WAYS
YOU RECOMMEND PEOPLE MANAGE THAT ANXIETY?
A: Learn to sit in the discomfort that comes with anxiety. This is a very powerful skill to develop. All psychological discomfort is temporary. There may be a trigger and then a spike in anxiety and an increase in discomfort. You might experience physiological symptoms, such as a racing heart, a sick feeling in your stomach, light-headedness, or tightness in your chest. The anxiety will peak and then, after a few minutes, start to dissipate. Once you recognise this and learn how to sit with it, you are back in the driver’s seat. The anxiety may still happen, which is normal, but it will no longer destabilise you.
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October 2023 | Issue 96
Breast Cancer Network Australia
Clinical Psychologist Dr Charlotte Tottman
Q: WHAT ADVICE WOULD
A: The silver bullet in all of this is exercise. I recommend you stay mobile and active. Moving helps your physical and mental health. If you’d like some emotional and psychological support, BCNA’s Upfront About Breast Cancer – What You Don’t Know Until You Do podcast series provides a combination of my own lived experience and professional know-how. I cover almost all the psychological consequences of a breast cancer diagnosis, treatment and aftermath. Plus, you can listen to it in your own time and when it suits you.
isolated, so check in and ask how things are really going for them. Third, look after yourself. Carers often feel invisible and that their own care needs must come last. However, if you are exhausted or unable to continue caring, it affects you and the person you’re caring for. Q: IS THERE ANY OTHER
YOU OFFER A SUPPORTER OF SOMEONE WITH BREAST CANCER?
A: First, appearances can be deceiving. Someone may look outwardly well but may still be struggling emotionally. Second, keep checking in with your loved one. People tend to flock in the early stages of a diagnosis and then vanish down the track. That’s when the person who’s been diagnosed may feel the most
MENTAL HEALTH SUPPORT OR STRATEGIES THAT YOU WOULD RECOMMEND?
Upfront About Breast Cancer – What You Don’t Know Until You Do Season 2 is available now! Season 2: Unlimited with Dr Charlotte Tottman focuses on Charlotte’s clinical experience and explores topics such as anxiety in a cancer context, managing behavioural changes, and the importance of setting boundaries for self-care. The podcast is available to listen to via BCNA’s Upfront About Breast Cancer website page, SoundCloud, Apple podcasts and Spotify. Read more about Breast Cancer Awareness Month and how we are helping you to live well, your way.
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Issue 96 | October 2023
COVER STORY
A UNIFYING POWER
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October 2023 | Issue 96
Breast Cancer Network Australia
I n a breathtaking display of solidarity, Breast Cancer Network Australia’s Field of Women 2023 painted a heartwarming portrait of community spirit, strength, and support. On a sun-kissed Melbourne Sunday in August, 10,000 individuals from all walks of life converged on the MCG. The crowd united to stand in the shape of the iconic Pink Lady silhouette, recognising and supporting people affected by breast cancer. Field of Women is not simply a visual spectacle, it serves as a poignant symbol highlighting the remarkable power in community.
As thousands stood on the field in-person, thousands more across the nation joined in spirit through the livestream and broadcast,
Such a remarkable achievement would not have been possible without the invaluable support of BCNA’s corporate partners. Major Event Partners – Bakers Delight and Red Energy –and Presenting Partners including Melbourne Football Club, Melbourne Cricket Ground, Melbourne Cricket Club, Herald Sun, and Chemist Warehouse, were pillars of this event. Beyond the numbers and the funds raised, Field of Women 2023 was a commanding platform to spread awareness. It symbolises the shared determination to alleviate the impact of breast cancer and instils a sense of hope in every Australian affected by it.
representing the collective compassion that binds us.
A powerful media reach of over 23 million extended the message far beyond the field, touching hearts, and stimulating fundraising activity. The event’s success culminated in over $1.5 million raised, a testament to the generosity of individuals and corporate partners alike. Contributions, both big and small, will play a pivotal role in supporting the 20,000 Australians who face a breast cancer diagnosis each year.
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Issue 96 | October 2023
WAVES IN CANBERRA Making metastatic
T ransitioning from Consumer Representative Lisa Tobin donned a warm coat and made her way to Parliament House for a breakfast panel event with a burning message in mind. Lisa was determined that people living with metastatic breast cancer, including her, should be made visible by being counted on cancer registries. Lisa was participating in a live- streamed BCNA and Parliamentary Friends of Women’s Health breakfast panel discussion, Making Perth’s Mediterranean climate to a chilly Canberra morning in August, BCNA
‘If we can’t be counted, how can we be looked after properly?’ Lisa said to the gathering. ‘With that data, they could do things like identify locations for staff placement, for specialty training, and we would have better access to psychosocial services. ‘We have different needs, our tests never end, our treatment never ends,’ she said. ‘We need those services because we are living longer, and so we need more of those services for a lot longer.’
Metastatic Breast Cancer Count. The event on Thursday 3 August was opened by the Hon. Ged Kearney, Assistant Minister for Health and Aged Care, and co- hosted by Peta Murphy MP, Member for Dunkley, and Bridget Archer MP, Federal Member for Bass. Lisa has been living with breast cancer for 23 years and metastatic breast cancer for the past 11 years, which is a cancer that can be treated but not cured. She believes if data registries had been tracking metastatic breast cancer when she was first diagnosed in 2012 it would have made a difference to metastatic breast cancer care, treatment, research, and support.
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October 2023 | Issue 96
Breast Cancer Network Australia
COVER STORY
Consumer Representative Lisa Tobin and Peta Murphy MPileen).
Reflecting on the last 23 years living with breast cancer, Lisa acknowledges there has been a ‘huge advancement’ in breast cancer care, treatment, and support, including the introduction of breast care nurses. ‘Imagine how much further we could go if we had all the data about metastatic breast cancer,’ Lisa says. ‘We would achieve far better outcomes in all aspects of research, treatment, and care.’ Lisa said the progress from the day BCNA released its issues paper – Making Metastatic Breast Cancer Count – in October last year to the Canberra call to be counted has been amazing. ‘The power of our joint voices (at Parliament House) will lead us forward, I’m sure,’ she says. ‘And this is just the beginning, we need to keep our momentum and our call for change going – we need to keep making our voices loud and clear.’ The panel discussion followed a National Roundtable on metastatic breast cancer data, which was hosted by BCNA in Canberra the previous day. The Roundtable was made up of key policy makers, cancer
The discussion was facilitated by BCNA Director Policy, Advocacy and Support Services, Vicki Durston, who noted that BCNA’s advocacy for better access to care, treatment, and support for people with breast cancer was as critical as ever: ‘We’re back here in Parliament House where it first started in 1998 when the silhouettes were planted outside of Parliament House,’ she said. ‘And yet, 25 years on, we’re talking about the lack of consistent national collection and collating of metastatic breast cancer data.’ Another voice heard was that of Peta Murphy MP, who is also living with metastatic breast cancer. ‘I’m just struck again by the strength and courage of the women and men with lived experience who haven’t just gone through something and said, okay… I’m just going to focus on myself,’ she said. ‘The fact that people do this, and that Lisa does it, it almost makes me cry every single time. ‘So never ever for a second think that anything that you’re doing isn’t making a difference,’ Peta said.
And this is just the beginning, we need to keep our momentum and our call for change going – we need to keep making our voices loud and clear.’
sector and data experts, and people living with breast cancer. Attendees workshopped and prioritised solutions that could see Australian cancer registries routinely collect cancer stage and recurrence data to help make those living with metastatic disease visible to policy
makers and health services. Recommendations will be released later this year.
Watch the Making Metastatic Breast Cancer Count panel discussion in Canberra here .
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Issue 96 | October 2023
FROM FIGHTING TO LIVING
M y original diagnosis came in 2018 when I was 39. My partner bumped into me and I felt some pain in my left chest. Both my mum and sister have had breast cancer and I have two sisters with a BRCA2 gene mutation, so we needed to get it checked. I had a biopsy and, within a week, I was having a mastectomy. I had three months of chemotherapy and then started Generally, I took everything in my stride. It was challenging, but the future looked bright. I had just started a new career as a psychiatric nurse and mental health key clinician. By Christmas 2021, the cancer had spread to my ribs, but I still had a long-term prognosis. Between 10 to 30 years was still relatively hope-filled for me. on Tamoxifen. I also had a prophylactic mastectomy to reduce the risk of preventative recurrence. Seven months later, I received the full metastatic diagnosis. We found out on the same day my partner started maternity leave to have our second child. My diagnosis came before we decided to have children. We used pre-implantation genetic testing to screen our embryos, so thankfully we’ve put an end to this genetic lineage. We also found out my life expectancy was now 5 years. I often get a surprised reaction when I tell people I have breast cancer. For me, I just have cancer. I don’t need to differentiate between male and female breast cancer. If you solely use the word ‘women’ to describe breast cancer, you’re mostly correct. But you’re still incorrect. Let’s just get it right from the outset that ‘people’ have breast cancer.
I’d like other men to be comfortable to share their diagnosis and seek out any
support they need. I don’t want men to feel ashamed about it. My main supports have been my partner and health professionals. Connecting with others through studies and being part of working groups and advocacy groups has also helped. Initially, I had a fighting mentality. I think that’s pretty natural. Now, it’s evolved into a living mentality. I think a lot about passion versus grief. When you’ve been given this diagnosis, grief is naturally going to be there. For me, I want to focus on all my passions. I enjoy academic life, so I’m doing an MBA and a Law degree. Thankfully, I’m responding well to the treatment. I’m still reasonably well physically, aside from some fatigue and nausea. I’m planning some travel and I’d like to write my life story. Keep passion at the centre of your life. The grief will still be there, but it will move to the periphery. I believe your passion can run alongside your grief, but make sure your passion runs a bit faster. Read more about Paul’s story on My Journey Genetic risk and breast cancer mutation such as BRCA 1 or 2. If you have a strong history of breast or ovarian cancer in your family, you can speak to your GP about your breast cancer risk. They may refer you to a family cancer centre, Only 5-10 per cent of breast cancers are due to a genetic or recommend some tests that can determine if you have a gene mutation that can increase your risk of developing cancer.
BCNA member Paul
Paul’s story highlights the importance of shifting our language around metastatic breast cancer to focus on ‘living.’ Recent advances in treatment mean those with metastatic breast cancer are living longer than ever, however still have many unmet needs. ‘Living Well, Your Way’ is this year’s Breast Cancer Awareness Month theme where we will shine a light on the different ways people live well during or after a breast cancer diagnosis. This aligns with year three of BCNA’s Policy and Advocacy Strategy, read more here . BREAST CANCER AWARENESS MONTH Living well your way
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September 2022 | Issue 92
Breast Cancer Network Australia
LIVING WELL WITH WALKING
G oing for a walk is one of television presenter Sally Obermeder’s favourite ways to move her body. ‘I love the solitude and the quiet,’ she says. ‘It helps me process my thoughts, be in my own head, move my body, and enjoy the fresh air and sunshine.’ While she enjoys walking alone, for one special day this October Sally is keen for some company! She is inviting the community to join her for a walk at the inaugural SWIISH WALK4BCNA in Sydney, held during Breast Cancer Awareness Month. The event was inspired by Sally’s own breast cancer experience. She was diagnosed with triple negative breast cancer at 38 when she was 40 weeks pregnant. ‘My entire world fell apart,’ she says. ‘Given the aggressive nature of the tumours, the outlook didn’t look good.
BCNA Ambassador Sally Obermeder
maximising her daily intake of highly nutritious super greens. She came up with the idea of creating a green powder that could simply be added to water. Together, she and Maha developed SWIISH, now one of Australia’s leading health brands offering a range of supplements to boost nutrition. Gradually, Sally was able to re- incorporate regular exercise back into her routine. ‘I still exercise most days for my physical health, but also my mental health, and I’m a big believer in lifting weights to make sure that my bones stay strong,’ she says. Sally found therapy also helped her to process what was happening and the changes she was going through. ‘Breast Cancer Network Australia was also an incredible source of support,’ Sally says. ‘Not
only was it beneficial for me but for the people around me who were navigating this new experience too.’ Creating the SWIISH WALK4BCNA is Sally’s way of recognising the support BCNA gave her and returning the favour, allowing BCNA to continue supporting others who have had a breast cancer diagnosis. ‘When you are surrounded by other people who have been through something similar, you realise you’re not alone,’ says Sally. ‘That realisation and feeling is irreplaceable.’ She’s looking forward to seeing the breast cancer community come together this October. ‘It’s such a beautiful feeling of community and to know that, together, we’re doing something really impactful,’ she says.
‘Everything was shrouded in sadness and uncertainty,’ she recalls.
Sally’s diagnosis ignited a passion for helping others to be healthy and live well. ‘I remember lying in my hospital bed about six months into my treatment and I rang my sister Maha and said, “if I survive this let’s start something together that makes people feel amazing”.’ That idea came to fruition during Sally’s recovery. While she was too unwell to exercise during treatment, Sally focused on
Join Sally, Maha, and BCNA for the SWIISH WALK4BCNA , a 4km or 8km walk around Metcalfe Park in Sydney, followed by a family-friendly festival on Sunday 15 October. If you can’t make it in person, you can join in virtually. To sign up, visit the SWIISH WALK4BCNA website
SUNDAY 15 OCTOBER, SYDNEY
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Issue 96 | October 2023
STAYING FLAT AND FEELING STRONGER COVER STORY
T he Friday before family business after 45 years and Grace’s twin daughters were about to start their first year of school. ‘It felt like the future was really bright,’ she says. The night following her daughters’ first day of school, Grace was feeling unwell and went to hospital. A few days earlier, Grace had a biopsy on a lump and was waiting on her results. She was surprised to learn when she went in to talk about her current illness that her examination had been cancelled because they needed to focus on her breast cancer diagnosis. Grace’s diagnosis, she and her family were celebrating. Her parents had just sold their ‘The surgeon said, “oh you’ve got a little bit of breast cancer”. She thought I already knew,’ Grace says. Grace was diagnosed with ductal carcinoma in situ (DCIS) and invasive breast cancer in her right breast. She was told her right breast would need to be removed and – after experiencing initial resistance from her surgeon – it was agreed that she could have a prophylactic (preventative) mastectomy of her left breast. Grace was presented with different breast reconstruction options but at no point was going flat discussed. Grace investigated her motivation for having a breast reconstruction and it became apparent to her that she felt she would be doing it for others, not for herself. She discovered many reasons why breast reconstruction didn’t
resonate with her and wanted to be able to feel any potential new growth. In fact, Grace liked the idea of never wearing a bra again and the freedom that came with it. ‘Some clothes really emphasise my flatness and when I wear those, I feel the most confident,’ she says. ‘Everyone is different, but that’s how it has impacted me.’ Grace decided she wanted an aesthetic flat closure and had discussed this with a surgeon who said, ‘we’ll make it look as good as possible ’. However, on the day of her surgery, that surgeon wasn’t available. Just before Grace went under anaesthetic, she was told she would be having a simple mastectomy with no mention of an aesthetic flat closure. Grace was given no time to confirm what she wanted. Along the way, Grace has met wonderful people, connecting in online support groups where she has heard from others with a similar experience. This was particularly valuable to Grace. She respected hearing how they were empowered by their choice. The group believe professionals to present going flat as an option. Secondly, to ensure that surgeries result in an aesthetic finish, so women in the future are making an informed choice that is right for them. ‘It’s important to be still and, in the silence, really ask yourself what you want,’ says Grace. ‘This decision needs to be about you – not anyone else. there is a need for improved communication from health
‘Remaining flat has had a positive effect on my mental health. I feel so much stronger, confident, and courageous.’ For Grace, a day like International FLAT Day signifies visibility. ‘It means that we exist,’ she says. ‘It means that we have stories to share. It means that we matter.’ Today, Grace lives in Italy with her young family as a direct result of wanting to live well, her way. She follows the thinking of, ‘I am well now. I am able now. So, do it now.’ You can read more about Grace and Kate’s stories in our upcoming Christmas Appeal. To find out more about making a donation, please click here .
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October 2023 | Issue 96
Breast Cancer Network Australia
Beyond breast reconstruction COVER STORY
T he road to breast spoke to a breast specialist who recommended an MRI but said there shouldn’t be anything to worry about. So, it came as a shock when Kate received the breast cancer diagnosis. Kate travelled from Carins to Brisbane to learn they had detected lobular carcinoma in situ (LCIS). She was told that they would continue to monitor it, however, Kate felt something still wasn’t right. She took it upon herself to keep raising her concerns, which ultimately led to Kate travelling to Melbourne. It was here she learnt of her second diagnosis, tubular carcinoma. reconstruction has been a long one for Kate. Following a routine mammogram, Kate Kate was informed that, if she was prepared to wait six months, she could have a double mastectomy and reconstruction at the same time in Brisbane. After weighing up her options and receiving advice that it was safe to wait, Kate opted to have the surgeries done at the same time. However, when her appointment finally arrived, Kate was told they no long did a mastectomy and reconstruction together. After a long and stressful wait, she was left feeling completely distraught.
‘I waited so long that I sometimes thought I should just live my life without them, but my kids were growing up and I needed to get my life back. I knew from wearing prothesis, I wanted to have shape,’ she says. When the date was finally set for her breast reconstruction, Kate felt excited and apprehensive. She was comfortable in her own body but knew she would regret it if she didn’t ‘give it a crack.’ It took another twelve months for her reconstruction to be complete as she had expanders put in. Now that the surgery is done, Kate feels lighter – knowing she no longer has to worry about her surgery date or channelling her energy into advocating. She is proud that her advocacy raised awareness but also towards helping others experiencing delays. Kate is happy with her decision to proceed with breast reconstruction and thankful that she can now move on. Since her reconstruction, Kate has finished her studies and work on her house. She is also looking forward to getting back into exercise to take the next steps towards building a beautiful life beyond breast cancer.
‘That was the biggest shock of all,’ says Kate. ‘I think all the tensions and frustrations had really built up by that stage. It was hard to hear.’ During this time, Kate also had to deal with the loss a lifelong friend who died from breast cancer. ‘We vented together about cancer and its treatment,’ she says. On top of this, following her double mastectomy, Kate was informed that they had located a third cancer. She was told that ductal carcinoma in situ (DCIS) had formed during that six-month waiting period. Kate could not have foreseen at this point that she would be waiting almost ten years to have her breast reconstruction surgery. Kate had to be her own advocate to find out when she could expect to receive a date for surgery. She not only contacted the hospital but got so far as to contact her state’s Minister for Health and eventually local media until she finally received a surgical appointment. The energy that went into self-advocating was draining while caring for her family. It meant that sometimes Kate had to put herself second.
Helpful resources If you are considering breast reconstruction or whether to go flat, there are resources that can help: • Breconda is a breast reconstruction decision aid that can assist you to navigate whether breast reconstruction is right for you. • BCNA’s Online Network is a peer-to-peer online community. There are private groups you can join called ‘Choosing Breast Reconstruction’ and ‘Flat Chat – No Breast Reconstruction’ where you can talk to others about their experiences • Watch the webcast Breast Reconstruction – Options and Expectations . • Access our Information and Resources hub at bcna.org.au • Equity of access to breast reconstruction, including increasing transparency of waitlists, is a key policy and advocacy priority for BCNA. Read more in our 2021 Breast Reconstruction Report .
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Issue 96 | October 2023
BERLEI SUPPORTS BCNA
S ince 2004, Berlei and BCNA have been proud partners with a vision to help every person feel supported and secure. This shared goal resulted in the My Care Kit, which contains a Berlei Post-Surgery Bra. Berlei pack and distribute these kits from their warehouse in Truganina, Melbourne, with support from volunteers. Recently, orders for the My Care Kit surpassed 200,000. Berlei Marketing Manager Caroline Prior reflected, ‘We are incredibly proud of our My Care Kit partnership program
with BCNA. The program has been operating nearly 15 years and recently reached the incredible milestone of 200,000 kits donated to those who’ve undergone breast cancer surgery. We wish to thank our staff and volunteers who thoughtfully prepare these kits; with each kit helping to support people during their breast cancer journey.’ We spoke to breast care nurse Barb Cummins, from Geelong, and Maree Clifford and Christine McKinnon who volunteer to pack My Care Kits, to find out about their involvement in the program and what it means to them. How important is the Berlei post- surgery bra in the first few weeks following surgery? Barb: It’s vital. The bra assists during healing and helps to decrease the risk of possible complications, like seromas. Most of my patients wear the bra for 3-4 weeks and I encourage them to wear it again if they are undergoing radiotherapy. What feedback do you get about the My Care Kit? Barb: I get a lot of positive feedback. My patients find the bra supportive and adjustable. The material is soft and doesn’t cause discomfort. The introduction of the larger sizes has been great too. It means we can offer the next size up if required, and ensures they are comfortable. What does it mean to you to be able to offer someone a My Care Kit? Barb: It’s being able to provide access to important breast cancer information along with the post-surgery bra, which promotes recovery. Also, some assistance financially, being one less thing they need to purchase. My goal for my patients leaving hospital post-mastectomy is to be able to walk
out the door physically looking like how they walked in. They can get dressed in the morning and look in the mirror and feel more confident. What attracted you to volunteer? Christine: I think it was just meant to be. BCNA were looking for someone at the same time I was looking for an opportunity following retirement. Maree: My friend, Wendy, was volunteering at the time and loved it. I then brought my friend, Heather, on board. How do the team at Berlei support you? Christine: There’s always someone in the team willing to help. Everyone is friendly and often I just walk around the corner from where we pack if I have any
Barb
questions or to have a chat. Maree: It’s a team effort, a real partnership. So many parts of the
warehouse are involved, and we couldn’t do it without the support of the Hanes warehouse staff. What does it mean to you to pack My Care Kits? Christine: I just want to help other people. When you’ve been through it yourself you know what it’s like and understand how helpful it can be to know that someone is looking out for you. Maree: I’m conscious when putting together packs that this can be people’s connection to know they aren’t doing this on their own. When I tell people about my volunteer role, some of them say, ‘oh wow, did you send my kit?’ They love receiving it. The bra is a temporary fix but it’s much bigger than just that. It’s the link to BCNA and knowing they are being supported. The My Care Kit can be ordered by your breast care nurse or phone our Helpline on 1800 500 258 for more information.
Maree
Christine
Pink bra campaign This October, Berlei will once again show their support for BCNA through the Pink Bra Collection. For every product
in their Pink Bra Collection sold, $10 will be donated to BCNA. To find out more visit berlei.com.au .
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October 2023 | Issue 96
Breast Cancer Network Australia
Walk or run for those affected by breast cancer at Carman’s Fun Run!
gathers for the 5K, 10K or a half- marathon to support Australians affected by breast cancer. In 2024, we are introducing a very special Pink Lady 5K Walk, which offers a wonderful opportunity to get together with family and friends, dress up in your finest BCNA pink merchandise, and walk together to raise funds for Breast Cancer Network Australia (BCNA). Come along and enjoy the live entertainment and activities on the day, or for those who can’t make it
in person be sure to sign up for the virtual run from 17-26 February. Your fundraising helps BCNA continue their important work, ensuring all Australians who are affected by breast cancer receive the very best care, treatment and support. For more information or to register for Carman’s Fun Run, please visit our website .
Registrations are now open for the Carman’s Fun Run on Sunday 18 February 2024 at Elsternwick Park, Brighton. BCNA are thrilled to once again be partnering with Carman’s and Sole Motive, who aim to turn the park into a sea of pink as the community
RADIE P NK It’s time to down tools and have
Luise
Anne
golf day, trivia night, or even a head shave, pink up your workwear with a Pink Tradie bucket hat, BCNA socks, and other branded merchandise and have some fun
These events help start a conversation about breast cancer with your workmates and provide an opportunity to discuss how BCNA can provide information and support if they, or a loved one, is diagnosed with breast cancer. For more information visit Pink Tradie or to purchase BCNA merchandise shop here .
some fun! BCNA is calling on tradies across the country to pink up and support the 20,640 Australians expected to be diagnosed with breast cancer this year. Pink Tradie ambassadors, Anne and Luise, are calling on fellow tradies across Australia to join them by hosting an event with your work crew. Whether it’s a morning tea,
with your workmates. Simply register your
#BCNAPinkTradie event today to set up an online fundraising page and receive a free party pack to theme your event.
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Issue 96 | October 2023
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