ISSN 1834-5921
MANAGING PERSISTENT PAIN AFTER AN EARLY BREAST CANCER DIAGNOSIS ASK THE EXPERT:
COVER STORY GET AROUND Pink Bun
THINK TANK 2024 YOUR VOICE MEMBER EXPERIENCE SURVEY
ABOUT CANCER Yarning
BREAST CANCER NETWORK AUSTRALIA’S MAGAZINE | ISSUE 97 | APRIL 2024
CONTENTS
LISTEN, WATCH, READ
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Letter from the CEO
BCNA news
STORIES 5
Thank you for sharing your experience Our new consumer advisory group
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PODCAST SERIES
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Ask the expert: managing persistent pain A view from the other side
What You Don’t Know Until You Do – Unlimited with Dr Charlotte Tottman Season 2
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T hink Tank 2024
Yarning about cancer
Podcast library
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M y story
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Carman’s Fun Run 2024
Supporting our advocacy at tax time Caring for loved ones and yourself too
BCNA WEBSITE
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A step forward
Check out our new look website: bcna.org.au Information and Resources Hub
Knowledge is power Giving myself the best chance
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BCNA Helpline – Here to help you
Online Network Event directory
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Celebrating 20 years
Paddles Up!
PInk Bun 2024
Front cover image: Behind the scenes shot of our three Pink Bun Ambassadors, Kansas, Sam and Jill along with CEO Kirsten Pilatti
Persistent pain after breast cancer – addressing quality of life
Ask the Expert: Menopause – It’s more than a hot flush!
Breast Cancer Network Australia Level 1, 293 Camberwell Road, Camberwell VIC 3124 1800 500 258 helpline@bcna.org.au bcna.org.au Editor: Carissa McQualter Designer: Marianna Berek-Lewis Contributors: Jeanie Watson and Anna Malbon
INFORMATION FORUM Mission Beach Information Forum Murray Bridge Information Forum
CONNECTING WITH OUR COMMUNITY
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Breast Cancer Network Australia
Letter CEO FROM THE
W hen we place the consumer voice at the centre of everything we do, we can be confident our purpose will be met—advocating for better care, treatment and support for all Australians affected by breast cancer. In November last year we decided it was again time to “take the pulse” and ask for your feedback on how we are doing, and whether we are meeting your needs for support and connection. We conducted two national surveys—one for people diagnosed with breast cancer and one for health professionals—using these valuable responses to ensure we are consistently designing our policy, advocacy and information support services with you in mind. Read more about our member experience survey on page 5. This year we have already seen two significant outcomes in our advocacy. In February, our advocacy work to have people with metastatic breast cancer counted in our cancer registries crossed another major milestone when Prime Minster Anthony Albanese announced $1.5 million in funding to the Australian Institue of Health and Welfare to create a cancer data alliance. This will see state and territory cancer registries supported to work towards this goal. The late Peta Murphy MP’s amazing legacy in championing better breast cancer care and treatment was acknowledged with the naming of the new Peta Murphy Breast Imaging Suite at Frankston Hospital, Victoria. Connection and Social Capital was a great theme for our 2024 Consumer Think Tank, which was held at the end of March. It reinforced our values as a consumer- led organisation, where the consumer voice is valued and central to everything we do. I really enjoyed hearing more than 50 BCNA consumers, staff, Board members and guest speakers sharing their creative ideas and experiences. It was an amazing three days of listening and celebration. Read more about this special event on pages 8 and 9. Last month, we had the pleasure of travelling to Murray Bridge, South Australia, for our first Information Forum for 2024. It was one of our highest attended forums in recent times. How wonderful it was to see everyone connecting with each other. Our next
stop is Tasmania, where we will be visiting Devonport on 30 April and Hobart on 2 May. If you’re in the area, we’d love to see you there or you can join us online. Check out our website for details . This year we are celebrating a 20-year partnership milestone with Berlei. We are so incredibly grateful to Berlei for their support across two decades, which includes the delivery of more than 200,000 My Care Kits for those undergoing breast cancer surgery. There have been many highlights along the way, which we share with you on page 17. We are getting excited (and hope you are too) for our annual Pink Bun campaign with Bakers Delight from 9–29 May! We are thrilled to introduce the wonderful faces of this year’s campaign on page 5. Please head into your local bakery to see the incredible support given to us by Bakers Delight and be sure to grab a Fun Bun or a six-pack while you’re there! 100% of Pink Fun Bun sales go to BCNA. We hope this edition of The Beacon highlights the power of your voice in helping to impact change. From our member survey to the metastatic breast cancer roadmap announcement, Think Tank, and all the incredible stories our members share—each voice comes together to strengthen our network.
Kirsten Pilatti Chief Executive Officer
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Issue 97 | April 2024
News
BCNA
RAISING OUR VOICES B CNA is excited to report some great outcomes announcements at the start of February: • $1.5 million funding announced from our advocacy with two exciting by Prime Minister Anthony Albanese to create a cancer |ata alliance, which will see state and territory cancer registries supported to work towards routinely collecting cancer stage and recurrence data. We are proud to have started this advocacy to have people with metastatic breast cancer counted. Read more here and on page 13. • The new Peta Murphy Breast Imaging Suite at Frankston Hospital, Victoria. BCNA had long been advocating for this service in Frankston, having become aware of the issue in 2020 after learning that patients at the hospital were being required to walk across a busy highway to access diagnostic imaging services. Read more about how BCNA welcomes new Peta Murphy Breast Imaging Suite at Frankston Hospital
Our advocacy continues full steam ahead this year, most recently with our submission to the Federal Treasury on genetic discrimination in life insurance underwriting. Dr Jane Tiller, an adviser in public health genomics at Monash University, has reported that fear of genetic discrimination is a barrier to people taking potentially lifesaving genetic tests. BCNA is therefore joining many other organisations and consumers in calling for a complete ban on the use of genetic testing results in life insurance underwriting. TURNING UP THE VOLUME IN TASMANIA D espite progress in breast cancer care over the past decades, gaps and inconsistencies in treatment, care and support remain. Around six years ago, BCNA became aware that there was no public diagnostic mammography service in Hobart. Despite us advocating for a service for the past six years, there is still no such service in Hobart. This means people needing a diagnostic mammogram in Hobart have to pay for one in the private system
or even travel interstate to access timely diagnostic mammography. The Tasmanian state election on Saturday 23 March gave us an opportunity to to dial up our advocacy for a public diagnostic mammography service. In the months leading up to the election we called on all candidates contesting the election to commit to short and long-term solutions so that women who present to their GP with symptoms of breast cancer are able to have a timely diagnostic mammogram without incurring out of pocket costs or having to travel interstate. We issued an open letter and travelled to Tasmania to meet with the candidates calling for urgent commitments to address the problem. Any delay to a breast cancer diagnosis risks the breast cancer progressing—or even metastasising —and so BCNA remains ready and willing to work with the new Tasmanian Government to fix this problem and restore basic healthcare in Tasmania.
For all of the most up to date news from BCNA, go to www.bcna.org.au/latest-news/
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Breast Cancer Network Australia
Thank you for sharing
Your Experience
member Sue Dowe said the introduction of the CAG is an exciting and valuable step in BCNA’s evolution. “Cancer advocacy is an increasingly competitive space ... we will be focusing on immediate issues relating to diagnosis, treatments and research, and ... issues that follow such as access to care throughout Australia, and the wide range of flow on effects to families and carers, children, work, finances and the displaced sense of self to name but a few,” she said. • Respondents said BCNA’s information needs to be more tailored for specific communities, for example First Nations Peoples, those with metastatic, men with breast cancer, people living with a disability, and LGBTIQ+ people. • BCNA was seen as an organisation that improved breast cancer outcomes through advocacy and the voices of lived experience. • For some members, the pink branding did not sufficiently differentiate BCNA from other breast cancer organisations and for others the pink lady branding was considered less inclusive of diverse breast cancer experiences. We have presented the recommendations to BCNA’s Board, and the findings were also discussed at our Think Tank 2024. Read more about the Think Tank on pages 8 and 9. The findings will be explored with our Consumer Advisory Group (CAG) and Strategic Advisory Group (SAG) to help inform our activities going forward.
Cooperative Research Group at the University of Sydney (PoCOG), who helped us—along with a lived experience breast cancer group— design the survey and analyse the results. The survey aimed to find out if BCNA’s information and support services—including our Helpline, Online Network, website, podcasts, and webcasts—are meeting the needs of members. WHAT WE WERE TOLD • The majority reported being referred to BCNA by their breast care nurse. • Respondents thought BCNA information was evidence-based, clear, easy to understand, relevant and trusted. • People reported some of their information needs were not met, including management of side effects, assistance with emotional impact, managing fear of recurrence, and navigating a new normal after diagnosis. • A large number said they were not aware of the full range of BCNA’s information and services.
W e have further strengthened BCNA’s approach to working with consumers with the formation of our new Consumer Advisory Group (CAG). BCNA’s CAG is made up of seven dedicated Consumer Representatives (CRs) from our Seat at The Table (SATT) program, and our CEO Kirsten Pilatti. They bring their skills, experience and diverse consumer perspectives T he consumer voice we asked members affected by breast cancer and health professionals about their view on us and our role in connecting, informing, and building confidence in engaging with the cancer care system. Of the 2,512 people that responded to our call, around one third had been diagnosed in the last 12 months. We conducted this survey in partnership with Psycho-oncology Sharon Oakley and Kate Keogh Murray—CR’s involved in co-design of member survey is central to everything we do. In keeping with this principle, in November 2023
OUR NEW CONSUMER ADVISORY GROUP
together to enable a strategic consumer-centred view for BCNA across the organisation’s strategies, capabilities, practices, processes and systems to support delivery of our purpose. Kirsten said our first CAG represents a pivotal milestone in BCNA’s journey. “By embedding the consumer perspective into BCNA’s organisational structure, BCNA is reinforcing its commitment to being led by and harnessing the consumer lived experience,” she said. CAG
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Issue 97 | April 2024
ASK THE EXPERT MANAGING PERSISTENT PAIN AFTER AN EARLY BREAST CANCER DIAGNOSIS
Professor Paul Glare
T he Beacon spoke with Professor Paul Glare, Chair of Pain Medicine in the Northern Clinical School of the University of Sydney, to discuss what persistent pain is, when to seek help, and where to find support. WHAT IS A PAIN MEDICINE SPECIALIST? Pain medicine specialists are doctors who assess and treat pain. Most have completed fellowship training by the Faculty of Pain Medicine of the ANZ College of Anaesthetists and have the letters FFPMANZCA after their name. Multidisciplinary pain clinics include physiotherapists, psychologists, occupational therapists, and doctors. They tend to approach a patient’s pain holistically, rather than relying on drugs and injections to manage pain and offer psychosocial assessments and a range of pain management treatments. WHEN MIGHT A PERSON EXPERIENCING PERSISTENT PAIN AFTER TREATMENT FOR EARLY BREAST CANCER BE REFERRED TO A PAIN MEDICINE SPECIALIST? Having treatment for early breast cancer can be painful, for example, recovering after surgery or chemotherapy. This pain is normal and generally managed by your surgeon, oncologist or GP. Remember that breast cancer and pain aren’t always related. However,
WHERE ARE PAIN MANAGEMENT CLINICS AVAILABLE IN AUSTRALIA?
there’s no obvious cause, such as another tumour or an infection, it’s considered persistent pain. Many people who get breast cancer may already have other kinds of pain, such as a bad back or arthritis. Feeling sick from cancer or its treatment also means they can get deconditioned and this can make their original pain worse. When the usual treatments to reduce someone’s pain haven’t worked, their GP, breast surgeon, or medical oncologist can provide a referral to a pain specialist. WHAT DOES A PAIN MEDICINE CLINIC PROVIDE? Unlike measuring your temperature or blood pressure, pain is subjective. Pain specialists rely on your assessment of it, which includes both its sensory and emotional components. If you only address the sensory component (severity) and ignore the emotional component (the distress it causes), pain management will be less effective. A multidisciplinary team focuses on how the pain is impacting your functioning and level of distress and tries to reduce the intensity of the pain. Working with a multidisciplinary team teaches you to do things you may not think you can, and often helps to reduce the intensity of your pain. These strategies can help with different kinds of pain, including neuropathic pain.
Most of the large hospitals in metropolitan areas have pain
management clinics as well as some larger regional centres. In rural and remote areas, many psychologists and physiotherapists have expertise in pain management, so you don’t necessarily have to travel to a hospital clinic. Lack of access to specialised pain management support is an issue. I’m involved in a research project looking into how we could provide access to pain management via a digital intervention to help improve access for people living in rural and regional areas. WHAT ADVICE WOULD YOU GIVE TO SOMEONE WHO’S READING THIS ARTICLE AND THINKING IT RELATES TO THEM? Pain after cancer treatment is common. Believe that your pain is real. If the pain is not interfering too much with your life, then keep doing what you’re doing. However, if it’s causing you distress and disability, and you’re unable to function properly, then seek help because there’s likely to be an emotional component to your pain. A doctor, psychologist, or physiotherapist who understands persistent pain can teach you pain self-management techniques that offer you a good chance of returning to a more normal and enjoyable life.
if your pain continues beyond the usual recovery period and
To learn more about persistent pain after early breast cancer, watch BCNA’s webcast Persistent pain after breast cancer—addressing quality of life
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Breast Cancer Network Australia
A View from the Other Side D r Beryl Tan is a specialist plastic surgeon whose work includes breast reconstruction, facial aesthetics and body contouring. Her colleagues at Western Health and in private practice in Brighton, Victoria, include breast surgeons
“That could have had a huge impact on my career as a surgeon.” Beryl says her role as a health professional helped her deal with her diagnosis and approach to treatment. “For one thing, I had complete trust in the people who treated me,” she says. “For another, I knew what to expect.” “It also helped that I am a glass-half-full kind of person. I just knew I had to stay positive and get on with my life,” she says. Knowing breast cancer generally has a high rate of survival in Australia also helped Beryl maintain an optimistic outlook. “We have good, strong evidence about what works best now because of the continuous research and advances in the treatment of breast cancer,” she says. “Early detection makes a difference.” On reflection, she thinks her experience of breast cancer has changed the way she works as a surgeon. “While I’ve always tried to put myself in the patient’s shoes, I suppose I’m now more in tune with what to say for some people and who I choose to share my experience with,” she says. “For some patients, it makes a huge difference when I say, ‘I know how you feel, I’ve gone through the same thing’ They find it very reassuring,” she says. During her recovery, Beryl found it helped to keep up her normal
routine as much as possible. “When I had radiotherapy, I’d work half a day and go for radiotherapy the same day,” she says. “I continued with my gym and did a lot of hiking, which kept me sane.” She also found it helped to be kind to herself and lean on others. “I know it’s easier said than done, but you need to allow your body and mind time to process your diagnosis and accept it,” Beryl says. “Remember, you’re not going through this alone because there’s always help—and not just from your loved ones. There are also your doctors and breast care nurses who genuinely care about you.” BERYL’S TOP RECOVERY TIPS • Try as best you can to follow your treatment team’s instructions. • Rest—give your body time to heal; prioritise sleep. • Eat foods that optimise healing —this includes protein-rich food
and oncologists. In 2020, Beryl was diagnosed with breast cancer and her experience as both a health professional and a patient coloured her experience. In December 2020, Beryl noticed one of her nipples had retracted, which was something new. She spoke to a colleague and friend who recommended investigating further and, after some scans and tests, she was diagnosed with breast cancer. Everything went quickly at that point. Beryl had a mastectomy and axillary clearance. She chose to have an implant reconstruction because she wanted the fastest recovery time. She also opted to have the Oncotype DX test, which is a type of genomic test. Genomic testing is sometimes recommended when the benefit of chemotherapy or hormone-blocking therapy is uncertain. These tests can provide information about how likely it is the cancer will return and whether treatment like chemotherapy may help to reduce this risk. Based on these test results, Beryl was told she wouldn’t need chemotherapy. “That was an incredible relief for me, especially given one of the potential side effects of chemo is peripheral neuropathy,” says Beryl.
such as fish, meat and beans, as well as colourful vegetables for vitamins and minerals.
• Maintain your normal activities and hobbies as much as possible. • Reflect and re-evaluate your life, decide what is important.
Oncotype DX is not covered by Medicare and has an out-of- pocket cost. There are also other types and brands of genomic tests that incur different costs. Speak to your treating team to find out more.
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Think Tank 2024– A CELEBRATION OF CONNECTING, IDEAS, SHARING AND LISTENING
B CNA Consumer Tank 2024 perfectly, and there wasn’t a dry eye. “I’d like to thank BCNA for the opportunity (of being a CR) to make a difference—for me it’s a legacy.” With those words, three incredible days of discussion and connection at BCNA’s third annual Think Tank Representative (CR) Lisa Tobin summed up the mood and intent of BCNA’s consumer Think event on Wurundjeri Country in Melbourne came to an end on Tuesday 26 March. It was an opportunity for BCNA consumers from across Australia to connect, share ideas, reflect and explore opportunities for BCNA’s future direction. Reflecting on this year’s theme “connection and social capital”, CR Naveena Nekkalapudi said it’s
important to have a seat at the table when decisions are being made that pertain to us, “because there is no for us, without us”. More than 50 CRs, members of BCNA’s lived experience groups, BCNA staff, Executive and Board discussed the findings of the recent member survey, on building social capital, including reflections on opportunities, how CRs bring their experiences and connections to their CR roles and growing our understanding of community to amplify the diverse experiences of Australians affected by breast cancer. In break-out groups, Think Tank attendees explored themes including partnerships with other organisations, diversity and inclusion, expanding opportunities and leveraging BCNA’s experience and power to contribute across all cancers.
Attending her first Think Tank, new CR Emily Duncan said the Think Tank was a wonderful experience, and great to have so many different voices in the room, and passionate people. “One of the key takeaways is there has been a whole lot of enthusiasm towards developing more diversity, inclusivity and intersectionality and really having some detailed discussions around how we drive that forward for the organisation,” she said. Before Think Tank 2024, attendees had told us their hopes and expectations would lead to new and deepening relationships with each other, space to think about and discuss BCNA’s next 25 years, to share knowledge and expertise and to be inspired. The consensus was it didn’t disappoint.
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Breast Cancer Network Australia
Yarning ABOUT CANCER
B CNA ensured the 2024 Think Tank program had a strong focus on our Aboriginal and Torres Strait Islander people. Responding to the unmet needs of First Peoples with cancer was an important BCNA commitment following the World Indigenous Cancer Conference which took place in Naarm (Melbourne) in March 2024. In 2003, as a new mum with her second child in her early 30s, receiving a breast cancer diagnosis was the very last thing Jacinta Elston, an Aboriginal woman from Townsville, expected to hear and as she told a captivated audience at BCNA’s Consumer Think Tank in March—her first thought was: “she didn’t have time!” Not only mother to a 7 year old daughter and a baby, she was the Associate Dean of Indigenous Health at James Cook University, Townsville. But in that strange way that life tends to throw unexpected and unwanted curve balls, Jacinta says her breast cancer diagnosis re- set the direction of her advocacy in improving outcomes of First Peoples towards a greater focus on the chronic gaps in cancer treatment, support and care. Her re-shaped advocacy journey in response to her lived experience of cancer, led her down many paths including joining BCNA’s Board in 2016 and becoming the inaugural Pro Vice Chancellor (Indigenous) at Monash University in 2018. In early 2022 Jacinta said goodbye to her important role at Monash to become a consultant who helped Cancer Australia in their efforts to talk to Aboriginal and Torres Strait Islander communities as they developed the Australian Cancer Plan. On the third day of Think Tank, Jacinta—who received her breast
cancer diagnosis 21 years ago— hosted a session of First Nations storytelling, with proud Yorta Yorta Elder Aunty Pam Pedersen, followed by a presentation from Colin Darcy, an Aboriginal man of the Narungga people, who is a partnerships and program advisor at Cancer Council Victoria. Jacinta shared with attendees that over the last five years she became very aware that cancer inequity in Indigenous communities was becoming more and more important, and that in 2022 it became recognised as the leading cause of death for Australia’s Indigenous people. This triggered her decision to leave Monash University after only four years and she become a consultant to Cancer Australia to help strengthen their Aboriginal and Torres Strait Islander focus. She said her role in consulting and being on BCNA’s Board, help her advocate around the Cancer plans of both Cancer Australia, and the National Aboriginal Community Controlled Health Organisation (NACCHO). Both plans were launched last year and provide a focus for strengthening and advocating for better cancer services, support and outcomes for Aboriginal and Torres Strait Islander people. She was proud to have played a part in influencing the National Cancer Plan, with “about a third of its focus on Aboriginal and Torres Strait Islander people”. According to research from the Australian Institute of Health and Welfare (AIHW), the gap in cancer mortality rates between Aboriginal and Torres Strait Islander people and non-Indigenous people is widening. Breast cancer is the most commonly diagnosed cancer in First Nations women. Although First Nations
women are slightly less likely to be diagnosed, they are more likely to die from breast cancer. The 5-year relative survival rate for First Nations people is also lower (81%) compared to the general population (92%). “The biggest issue that we now have is that cancer has become the leading cause of death for Aboriginal and Torres Strait Islander people,” Jacinta said. “It’s overtaken the other chronic diseases that Aboriginal and Torres Strait Islander people have been struggling with.” In the 21 years since her breast cancer diagnosis, Jacinta has witnessed change in Aboriginal health, particularly in the cancer space. “We’ve thought about the chronic diseases, cardiovascular disease, diabetes, those sorts of things … and we haven’t been thinking about cancer because our mob weren’t living long enough to get to cancer,” she said. Jacinta and Aunty Pam agreed on the enormous challenges ahead, particularly in remote Indigenous communities. They gave examples of First Peoples having to travel from far northern Western Australia to Perth for breast cancer treatments and the culturally insensitive experiences in “white” environments. Aunty Pam said that during treatments many First Peoples felt shy, frightened and disengaged. “It’s hard for our people to go to any health services because of how they feel.” Aunty Pam—who is 80 and was diagnosed with breast cancer in 2016—delighted attendees with stories of her fitness regime— swimming and running—and in February this year running 10 kilometres at BCNA’s annual Carman’s Fun Run.
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Issue 97 | April 2024
KATHY WELLS SHARES HER NEW PERSPECTIVE My Story:
BCNA Board for their tremendous support following my diagnosis. It gives an added perspective to our work and a real passion to do whatever we can to support others who are diagnosed.
me back to bed after my morning shower because all my energy had been zapped. Thank goodness for family and friends. I loved getting the text message that someone was on their way to drop a meal at my door. My oncologist recommended I see an exercise physiologist to help tackle the fatigue, and I looked forward to it each week. I met a wonderful group of women at those classes and most of us are still going three years later. I had three nights in hospital between my AC and taxane chemotherapy regimens, with an infection and very low blood pressure. My wonderful medical oncologist visited me every day and apologised for putting me there! Her awful chemo did the trick however, and I was very lucky to have no cancer left when I got to surgery. Unfortunately, I developed permanent peripheral neuropathy in my fingers and feet from the paclitaxel chemo. I’m now on medication and, while it doesn’t ease the neuropathy completely, I have learned to live with it. I didn’t realise how much my long and lonely year of treatment had affected me until I left my last radiotherapy session. I sat in the car and burst into tears. While I have not made any drastic changes to my life, I made a deliberate decision to choose happiness. Now I say yes more often. I used my long service leave for a trip to Europe. I’ve kept a shorter hairstyle that I decided I liked when my hair was growing back after chemo. Today I feel the best I have in years. I’m one of seven women working at BCNA who have been diagnosed with breast cancer. I am thankful to CEO Kirsten Pilatti and the
THINGS I HAVE LEARNT
Do your own breast checks between regular breast screens and see your GP if there are any changes. Find a treating team you like and trust. Listen to your body— stay in bed longer or have a quiet day in front of the tv. Try to get out at least once every day—seeing the green trees and sunshine lifts your mood. If you can afford it, find an accredited exercise physiologist who manages people with cancer. Say no to things. Small things can make a big difference—a good friend sent me a red heart emoji every morning just to let me know she was thinking of me (and often still does).
K athy, BCNA Chief of Staff
I was diagnosed with an aggressive triple negative breast cancer 15 years after starting work at BCNA. While it seemed ironic, why not me? I noticed a flat, jelly-like disc in my breast nine months after my last breast screen. I went to my GP and was diagnosed in January 2021. Melbourne’s lockdown made it difficult not being able to see people through much of my treatment, but my work put me in the fortunate position of knowing what to expect. Nevertheless, I joined BCNA’s Online Network for helpful advice. I realised there was not a lot of information on triple negative breast cancer, so we wrote an information page in My Journey and the article Finding breast cancer information and support online —so people don’t have to plough through unreliable or scary information. I had five months of neo-adjuvant chemotherapy (chemotherapy before surgery), then breast conserving surgery, and four weeks of radiotherapy. The fatigue was sometimes debilitating—sending
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Breast Cancer Network Australia
Carman’s Fun Run 2024
On Sunday 18 February, Melbourne turned on the perfect weather for over 6,000 Carman’s Fun Run participants who gathered at Elsternwick Park. Either running or walking the route, they collectively raised over $287,000 for BCNA to ensure all Australians affected by breast cancer receive the very best care, treatment and support. BCNA CEO Kirsten Pilatti and Carman’s Founder Carolyn Creswell welcomed the crowds, along with our much-loved ambassador Raelene Boyle, AM, MBE. The event village was awash with pink, children’s activities, food trucks, entertainment, face painting, and the very popular Melbourne Vixens inflatable netball activity. BCNA would like to thank our wonderful event partners Sole Motive and Carman’s, and all of our BCNA corporate partners and supporters who participated, fundraised and supported the event, including Bakers Delight, Red Energy,
Middy’s Electrical, Opal, Melbourne Vixens, and the Melbourne AFL and AFLW players. We would also like to recognise the Gaudry Foundation for their generous dollar matching donation of $10,000! Without all the amazing participants, volunteers, donors, event staff and our partners the day would never have been such a huge success! Thank you to everyone. Mark your diary for February in 2025 when we do it all again.
SUPPORTING OUR ADVOCACY AT TAX TIME
S arah was diagnosed with de novo metastatic breast cancer (ER+HER2-) in 2017 at 41. “I had 19 lymph nodes removed, and my breast cancer had spread to my spine,” she says. “I undertook six months of chemotherapy followed by a mastectomy, 25 sessions of radiotherapy and a bilateral salpingo-oophorectomy.” In 2021, Sarah was told her cancer had also spread to her liver. After less success trialling other drugs, Sarah was put on a new drug. She has been self-funding this at $12,300 every three weeks since. “There is no denying this drug is working for me,” she says. “I am thriving—I run 40km a week, I go to the gym three times a week. I work four days a week, laugh lots with family and friends and enjoy life.” In Australia, new cancer drugs are first approved by the Therapeutic
Goods Administration (TGA) prior to being considered for government subsidy through the Pharmaceutical Benefits Scheme (PBS). If someone wants to access these drugs as part of their treatment prior to PBS subsidy, they need to pay tens, if not hundreds, of thousands of dollars. This creates a sizeable gap in equity of access to potentially lifesaving or life-extending therapies. “If this drug was added to the PBS. for my type of breast cancer, it would reduce the financial stresses in my family’s life and allow us to completely emerge in the dream of more memories in the time I am being given,” Sarah says. “There is the sheer terror of what happens when the money runs out—a decision that is not too far away—imagine having to make the decision to stop a drug that’s working in keeping me alive!” According to Medicines Australia, the average time from TGA registration
to PBS subsidy for cancer therapies is 537 days. BCNA advocates for a more streamlined process, while also providing submissions to support drugs being listed on the PBS, and advocacyte to pharmaceutical companies to implement access programs for patients like Sarah while they wait for PBS subsidy. “BCNA were pretty much the catalyst for getting the drug on the access scheme,” Sarah says. consider donating to our Tax Appeal, which runs from 3 May to 30 June. Your generosity helps BCNA continue to advocate so that all Australians affected by breast cancer have access to the latest treatments and medications. How can you help? BCNA would love you to
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Issue 97 | April 2024
AND YOURSELF TOO Caring for loved ones
M y husband Harry was an amazing man. His wonderful attitude and good humour made my job as his carer much easier, but it was a 24/7 job—he was always on my mind. Harry was first diagnosed with breast cancer in 2005. We didn’t tell anyone for weeks. We thought, how can a man have breast cancer? Then Harry started having chemo a month later and we had to tell everyone. They were just shocked. After he finished treatment, he was fantastic for 13 years. We worked together for 40 years and had a fabulous marriage. He adored me, even when he didn’t! Then, in 2018, it came back with a vengeance as stage IV metastatic breast cancer. I tried to do everything for him, but he was determined to be independent, even if it just meant putting on his own socks and shoes. He never complained but he became noticeably slower. He didn’t ride his bike as much and wasn’t able to do many of the things he loved. Our kids used to come over and look after Harry or take him out so I could do whatever I needed to. I still did my own things when I could. I’d catch up with friends, play mahjong, read and go to book club. But, for the last four months, I cancelled everything and just devoted my whole time to caring for him. Harry started chemo ins 2022 and our oncologist was outstanding.. Every time we saw her, we’d ask how long, and she was always honest with him. Towards the end, she told us there was no more chemo that would help him. We knew it was coming. We had talked about it and made sure everything was set up for me so there was no hassle at the end. We had been married for 51 years when Harry died last year.
When Harry was going through all of this, my friends and family were very supportive, and they still check in with me regularly. It’s hard to offer someone else advice because until you go through it, you don’t know how you’re going to act or what you’ll need. With Harry, I wanted to do everything in my power to help make his life easier, but I think all carers need some
time out, whether it’s just going for a coffee or a walk with a friend. The days can be long when you’re caring for someone. Raising awareness of male breast cancer is Harry’s legacy. Even years later, at the MCG for BCNA’s Field of Women , people asked why we were in blue ponchos. Harry was always keen to let people know how breast cancer affects men too. Recently, my daughter Sharon was diagnosed with breast cancer. I am now focusing on helping her and caring for my grandchild. When Sharon is well again, I will get back into doing things for myself, and the next time we stand on the Field together, we’ll be wearing a blue and pink poncho. To learn more about Harry and some of the work he did alongside BCNA, visit: Harry’s story, Fighting the stigma around men’s breast cancer Upfront about Breast Cancer podcast episode, In Conversation with Harry and Pieter: Raising awareness for men with breast cancer
Y vonne and Harry
BCNA RESOURCES FOR CARERS
Read Caring for someone Listen to Upfront About Breast Cancer podcast, Stuart Diver on supporting a partner with breast cancer Listen to What You Don’t Know Until You Do: Unlimited with Dr Charlotte Tottman podcast, The view from the other side of the bed: the partner’s perspective Listen to Upfront About Breast Cancer podcast, Caring for a loved one
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April 2024 | Issue 97
Breast Cancer Network Australia
COVER STORY
A STEP FORWARD T he City of Frankston Bowls Club’s Pink Pennant Day was the perfect setting for the great news that our
advocacy to have people with metastatic breast cancer (MBC) consistently counted on our cancer registries had come a step closer to being reality. Pink Pennant Day started at the Frankston City Bowling Club in 2021. Former MP Peta Murphy, who had been diagnosed with metastatic breast cancer, supported th event as club patron and helped it grow to include all twenty-five bowling clubs across across Victoria’s Mornington Peninsula. Craig Williams and the committee at Frankston have been integral in its success supporting BCNA and those in the local community affected by breast cancer. It was among a sea of bowlers, complete with BCNA’s pink bucket hats, caps and sport socks, that Prime Minister Anthony Albanese announced $1.5 million for the Australian Institute of Health and Welfare (AIHW) to oversee the formation of an Australian Cancer Data Alliance. This will see state and territory cancer registries supported to work towards routinely collecting cancer stage and recurrence data. The club also celebrated renaming its BCNA Pink Sports Day to the Peta Murphy Pink Pennant Day to acknowledge the late MP’s advocacy for breast cancer—and particularly for metastatic breast cancer. BCNA—along with our metastatic lived experience reference group and other consumers—is proud to have started this advocacy to ensure the diagnoses of people with metastatic breast cancer (MBC) are counted. Almost two years ago, we listened to a group of our consumer representatives living with MBC who told us they feel invisible. They wanted to be made visible by being counted properly on cancer registries across Australia. Currently this data is not consistently collected across all states and territories which
Today, we are announcing a $1.5 million investment to better track cancer stages and recurrence data—because the more we know, the better we can help. Anthony Albanese, Prime Minister “This Federal Government funding will help the sector pioneer the collection of this important data to inform and drive policy, innovation, planning, treatment and care,” Ms Durston said. “Today we can begin consolidating a way forward for better quality data not just for breast cancer, but for all metastatic cancers.”
makes directing services to where they are most needed a challenge. BCNA Consumer Representative Dr Andrea Smith—who is living with MBC—said this funding announcement demonstrates the power of those with MBC to shape the breast cancer advocacy agenda in Australia. “MBC is the most severe form of breast cancer and the only one you will die from. The systematic collection and reporting of stage and recurrence data will help bring us out from the shadows and make us visible in the sea of pink,” she says. BCNA’s CEO Kirsten Pilatti and Director of Policy Advocacy & Support Services Vicki Durston attended the announcement.
THE JOURNEY 1998: BCNA launches and commences advocating for all Australians with breast cancer. October 2022: We highlighted the problem with an evidence- based issues paper. You can read our issues paper here. August 2023: We galvanised the sector by bringing key data and cancer experts together at a National Roundtable in Canberra to discuss a way forward. November 2023: BCNA’s report Time to Count People with Metastatic Breast Cancer—A Way Forward, outlined a roadmap. February 2024: $1.5 million announced for state and territory cancer registries.
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bcna.org.au
Issue 97 | April 2024
IS POWER Knowledge
W hen my sister Amber was we didn’t know we had a family history of the disease. It wasn’t until her cancer returned in 2017, this time as metastatic breast cancer, that tests confirmed she carried the BRCA2 gene mutation. diagnosed at 34 with Stage 3 breast cancer in 2012, It turned out the gene had been passed down from my Dad’s side, but we didn’t know about the medical history of his large, estranged family. After a simple blood test, I found out I also have the BRCA2 gene mutation. At the time, I had an eight-month-old daughter and had just watched my sister go through treatment for metastatic breast cancer. Knowing I had the gene too added another layer of fear. I met with a genetic counsellor and had various appointments to assess my risk. After analysing the information, they told me I had a 2% increased chance of getting breast cancer. I understood that this would increase as I got older. As a final step, I had routine tests— a mammogram, ultrasound and MRI. During the MRI, they found eight centimetres of ductal carcinoma in my left breast. Suddenly, I had to make big life- changing decisions before I even knew how far the cancer had spread. There were a lot of questions and a lot of unknowns. It was a very tricky path to navigate. I would need to have IVF if I wanted another child. So, in just three days, I had to decide what type of surgery I wanted—a lumpectomy, a
single mastectomy or a double— as well as make decisions about my fertility. I decided I wanted to do as much as I could to increase my chance of living a long life with my daughter, so I chose to have a double mastectomy and no fertility treatment. I was very lucky that the cancer was contained mostly in my milk duct. If I had just kept having mammograms every two years, I would probably not be in a good position today. Some people in my own family and others who have a family history of breast cancer have chosen not to have genetic testing. I understand where they’re coming from, but I have a different perspective. I’ve lost my sister to it and now my Dad has recently been diagnosed with breast and thyroid cancer. When my daughter is 18, she’ll be able to have genetic testing. Hopefully, research and preventative surgeries will have improved by then, and there’ll be more awareness and screening for genetic mutations. Now, I actively participate in studies and focus groups through the Peter MacCallum Cancer Centre in Melbourne. For me, knowledge is power. I hope my story helps to raise awareness of genetic testing so that people can be more empowered. I feel like I can carry on being healthy and not live in fear every day. This September will mark the fourth anniversary since my sister Amber died from metastatic breast cancer. Everything l do in this area is to honour her memory and her wonderful life.
Award winning self-portrait photograph of Holly Clinton with her father with their matching mastectomy scars.
WHAT ARE BRCA1 AND BRCA2? The BRCA1 and BRCA2 genes (BRCA stands for BReast CAncer) usually protect us from developing breast cancer. However, inheriting a pathogenic variant (gene mutation) in one of these genes increases the risk of developing cancer. They are the most commonly inherited gene mutations. However, if one family member has a genetic mutation linked to breast cancer it does not mean that all family members will have it. CONCERNED ABOUT YOUR RISK? It’s important to know that only 5–10 percent of breast cancers are due to a genetic mutation. If you are concerned about your risk, talk to your GP or breast cancer specialist. You may be referred to a family cancer clinic. There is no charge for a consultation and genetic testing is free for people who meet certain criteria. To find out more about genetics and risk of breast cancer visit our website.
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April 2024 | Issue 97
Breast Cancer Network Australia
GIVING MYSELF THE BEST CHANCE
I ’ve always been an anxious person, particularly around health, so I knew I would have to get tested for BRCA1 or live with anxiety around it for the rest of my life. I’m one of five sisters and we decided to get the test after my eldest sister Jade was diagnosed with metastatic breast cancer. She carried the BRCA1 gene mutation. Turns out three of us carry it. Jade, my sister Carly, and me. When I found out I was a carrier, a month after Jade died, I was terrified. It’s been scary for my whole family, and hard on my sisters who don’t have the gene because I think they feel an element of guilt. Carly and I had to have tests every six months: an MRI at the six-month mark and then an ultrasound and/ or mammogram at the 12-month mark. She was diagnosed with ductal cell carcinoma in situ (DCIS) in 2020, and then stage three triple negative breast cancer two years later. Thankfully, she is now fully recovered. After months of watching Carly going through her treatment, and dealing with my own anxiety, I decided to go ahead with a preventative mastectomy and reconstruction. It was planned for July 2024 but brought forward after one of my follow-up MRIs revealed I too had DCIS. I had a lumpectomy, but a biopsy showed one of my lymph nodes had triple negative breast cancer cells. I commenced an urgent round of IVF for fertility preservation and had two back-to-back IVF rounds. It was rough. I have always wanted to be a mum, but after seeing my sister die and knowing I carry the mutation, I have now changed my mind.
I finished chemo in December 2023 and have just had a double mastectomy and reconstruction. I will continue to see my oncologist every three months and have an ultrasound every six months. I can’t get over this fear of it coming back, even though I know my risk is now lower than a woman who doesn’t have the BRCA mutation. I am now seeing a counsellor and have been referred to a psychiatrist. I also talk to my oncologist and my breast care nurse because they’re the ones I trust. I had a mental hurdle I had to cross before I decided to have preventative surgery. Unluckily for me, cancer beat me to the punch. If you have a history of breast cancer in your family, please consider being tested for gene mutations. Regular testing means early detection and early detection is vital for survival. Cancer does not discriminate. Cancer does not wait for you to be ready. Visit our Online Network to connect with others or visit our Information and Resources Hub for information relating to the fear of recurrence
Amanda and her sister Carly, discovered they were both carriers of the BRCA1 gene.
WHAT IS DCIS? Ductal carcinoma in situ (DCIS) is the most common type of non-invasive breast cancer. DCIS is the name for abnormal changes in cells in the milk ducts of the breast. It is non- invasive because it hasn’t spread into any surrounding breast tissue. DCIS isn’t life threatening but can increase the risk of developing invasive breast cancer later in life.
MY STORY Would you like to share your story? Everyone in the BCNA community has their own story to tell; of their experiences, the highs, the lows and everything in between. If you would like an opportunity to share your story, it could be on social media, in the next Beacon, on the website or even speaking in person to fundraising groups or local community activities please click here and we will be in contact. We would love to hear from you .
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Issue 97 | April 2024
Hello, this is BCNA. How can I help you today?
“When I called the Helpline, they were very supportive and empathetic. They were friendly and able to answer my questions.” Georgia, BCNA member – VIC
DO YOU KNOW ABOUT BCNA’S HELPLINE? Our Helpline is a free and confidential service providing information, support and referral to relevant services and resources. BCNA Helpline staff are on the other end of the line or available to respond to email, ready to listen and support you. The Helpline is available to anyone affected by breast cancer. We support those diagnosed, carers, family, friends and colleagues. We also provide assistance to health professionals and the public. A chat with our Helpline could be just that, a chat, or you may have questions you’d like answers to. Here are some of the most common questions: 1. W e can help you to access relevant and evidence-based information. ‘What are my options regarding the public and private health system?’ ‘What might my surgery or treatment options be?’
“For me, being on the Helpline provides the opportunity to sit in the space with people when they call and validate how they are feeling in that moment. I remind people that it’s OK to feel whatever they’re feeling and to focus on the trees rather than the forest.” Denise, BCNA Helpline Officer
2. W e can connect you with the BCNA community. ‘How can I talk to others going through a breast cancer diagnosis?’ ‘I don’t quite know why I’m calling. I would just like someone to talk to.’ ‘I’ve finished treatment and am feeling a bit lost. Who can I talk to?’ 3. W e can help you to access the right support at the right time. ‘What support is available following my diagnosis and during treatment?’ ‘I’m looking to talk to other people living with metastatic breast cancer.’ ‘How can I support a loved one who is going through a breast cancer diagnosis?’ 4. We are here to hear from you. ‘How can I raise a concern about my treatment?’ ‘How do I get a second opinion?’
BCNA HELPLINE’S TOP 3 RESOURCES
Information and Resources Hub: reliable, evidence-based and up-to-date articles, webcasts, podcasts and more, available here. Online Network: an active community providing a safe space to connect with others, share stories and ask for advice. Join the network here . My Care Kit: for those who have or will be undergoing surgery for breast cancer, the kit contains a specially-designed Berlei post- surgery bra and soft form(s) provided through a partnership between BCNA and Berlei. Find out more here.
‘I’m having trouble accessing treatment in my area. What should I do?’
‘What questions should I be asking of my treating team?’
How can you get in touch? We are available Monday to Friday, 9am –5pm AEST. Call 1800 500 258, email helpline@bcna.org.au or fill out our call back form.
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April 2024 | Issue 97
Breast Cancer Network Australia
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