The Beacon December FY22

ISSN 1834-5921



Discovering the power of words and reflections






Letter from the CEO


Ongoing support from our partners


Breast cancer inspired me to make changes to my lifestyle Transitioning back to work after breast cancer treatment Ask the Expert: Genetics and the risk of breast cancer Finding strength: A young mum’s cancer experience Being a breast care nurse in regional Australia Planning for the future: Advance care planning Discovering the power of words and reflections BCNA leads consumer voice at Australasian International Breast Congress (AIBC)



In conversation with Tania and Fiona: The challenges of living in a rural area following a breast cancer diagnosis


In conversation with Harry and Pieter: Raising awareness for men and breast cancer







Living well with lymphoedema with Maree O’Connor

16 18

Around the Network

Managing the side effects of hormone blocking treatment with Michelle White

Christmas Appeal and 12 Gifts of Christmas


Field of Women 2023

Just diagnosed with metastatic breast cancer, what’s next?

Editor: Amelia Cox Designer: Marianna Berek-Lewis Contributors: Jeanie Watson, Lisa Berger and Kerrie Griffin

Food and movement when living with metastatic breast cancer

INFORMATION FORUM Rockhampton on-demand presentations

Breast Cancer Network Australia Level 1, 293 Camberwell Road, Camberwell VIC 3124 1800 500 258


December 2022 | Issue 93

Breast Cancer Network Australia



W elcome to the December edition of The Beacon where we focus on stories and information to help you take charge of your breast cancer experience. In this edition, we hear from one of our members, Kath, whose breast cancer diagnosis inspired her to change aspects of her lifestyle, which she continues beyond treatment. We speak with Associate Professor Yoland Antill about genetics and testing for hereditary breast cancer, and Occupational Therapist Jo Lewis about how you can take charge of returning to work, including talking about your experience, making a plan and what you can do if you return to work and don’t cope. This year saw so many highlights including: connecting with our members in rural and regional towns around Australia at our Information Forums; updates to My Journey such as new resources for LGBTIQ+ communities and video content for our First Peoples; key policy wins including Trodelvy (sacituzumab govtecan) listed on the PBS for people with locally advanced or metastatic triple-negative breast cancer; the return of the Pink Lady Match at the MCG, and another incredible Pink Bun campaign with thanks to Bakers Delight. October was Breast Cancer Awareness Month and we shone a light on optimal care and what it means for you. Thank you to our members who shared their experiences to help others be informed to make decisions and access the best care possible. If you would like more information about optimal care, please call BCNA’s Helpline on 1800 500 258. We were thrilled to have a strong presence at the Australasian International Breast Congress (AIBC) in Brisbane in October. On Metastatic Breast Cancer Awareness Day (13 October), we hosted a health professional breakfast where we launched our Issues paper: Making metastatic breast cancer count . It was so lovely to have Dame Quentin Bryce and former BCNA Board Chair Marg O’Donnell in attendance, as well as a full house of health professionals from around the country. During the Congress, we had several Consumer Representatives and staff members present on topics including breast reconstruction, supporting LGBTIQ+ communities and what matters most to consumers. I really encourage you to read more about the metastatic breast cancer issues paper, the health professional breakfast and some of the other fantastic AIBC activities on pages 14 and 15. We have come so far in breast cancer, but I cannot believe that after 20 years of advocacy we are still asking for Australians living with treatable but incurable breast cancer to be counted.

At the Australasian International Breast Congress (AIBC) in October

Looking ahead to next year, we will be celebrating 25 years of Breast Cancer Network Australia. We are so excited that our Field of Women event will return in August in Melbourne, complemented by a full weekend of events that we would love you to be involved in. For more information see page 19. Next year also sees us back on the road with more Information Forums in regional areas around the country, so keep an eye on our website, your emails and our social media platforms to see whether we are coming to your area. The holiday season isn’t always an easy time so please make sure you take some time to refill your bucket and do things that make you happy, whatever that may be. If you would like to connect over the holiday season, our online network will be available day and night. The online network provides a space to talk, ask questions and hear experiences from others diagnosed across Australia. Our Helpline will be closed from 23 December to 3 January. Should you need support while our team is away, please call Cancer Council on 13 11 20. Please be aware that they are working on reduced hours during this time. Thank you for your ongoing support over 2022 and I look forward to seeing what the new year brings.

Kirsten Pilatti Chief Executive Officer

Issue 93 | December 2022





Thank you to BCNA’s foundation partner Bakers Delight and major partners Red Energy, Sussan and Berlei for their continued support to ensure those affected by breast cancer receive the best care, treatment and support. BAKERS DELIGHT

Berlei has been a proud major partner of BCNA since 2005 and, in October, launched a new Pink Bra Collection, donating $10 from the sale of each bra to BCNA. SUSSAN

Red Energy continues to support BCNA through the Red BCNA Saver plan, which has raised over $250,000 to date. Red Energy contributes up to $10 per month directly to BCNA, $5 for electricity accounts and $5 for gas accounts each month, on behalf of every residential customer on the Red BCNA Saver plan. To find out more call 131 806 or visit au/bcna/offer . In October, Red Energy hosted a Mini-field of Women at their local head office in Richmond to acknowledge Australians affected by breast cancer. You can watch it here .

BCNA team members, alongside BCNA former Board Member and breast cancer survivor Lisa Montgomery, attended the Bakers Delight Conference on the Gold Coast in September. Lisa presented to more than 500 Bakers Delight staff and franchisees, sharing her story of her breast cancer diagnosis and her gratitude for the continued support of Bakers Delight, which has contributed over $22 million to BCNA during our 22-year partnership.

Sussan has been proudly supporting BCNA for 17 years, raising more than $2.7 million. During October, Sussan sold two special edition products with $20 from every BCNA PJ set and $10 from every BCNA tee donated to BCNA.


BCNA’s Helpline offers compassionate and practical support when you need it most. 1800 500 258

Connect with others who understand what you’re going through on BCNA’s online network.

December 2022 | Issue 93

Breast Cancer Network Australia



BREAST CANCER INSPIRED ME TO MAKE CHANGES TO MY LIFESTYLE O n an ordinary day, in August 2019, I was having a shower after the gym before rushing to work when a

thought popped into my mind: ‘ Go and look at yourself in the mirror ’. When I stepped out of the shower, I immediately saw puckered skin on my right breast and, as I checked it, I felt a lump. A few days later, I was diagnosed with locally advanced triple positive breast cancer. Just six weeks before my diagnosis, I had decided to take a break from drinking alcohol. Until then, I’d had an unbalanced relationship with alcohol. I was not a daily drinker but identified as a binge drinker. It didn’t align with my values. I’m into holistic health, enjoy walking, running and hiking, and exploring my spirituality. Alcohol made me feel disappointed and critical about myself. In the past, I used alcohol to cope with life’s challenges. Yet, faced with the huge challenge of a breast cancer diagnosis, I realised healing was more important. I remained alcohol free and focused on the other lifestyle choices I had control over, including exercise, nutrition and stress levels. The hardest part of going alcohol free was realising how much drinking was connected with my identity. I was the party girl and I got a lot of positive affirmation

Kath Elliot and Ralph

alcohol consumption. Even low to moderate levels of drinking can impact your overall breast cancer risk. For me, not drinking and my breast cancer diagnosis have changed my life—for the better. One of the greatest lessons I’ve taken from my diagnosis is that I don’t want to take life for granted. By taking control, I’m living a life aligned with my purpose and values. If you’re living a life that you’re not feeling happy and engaged in, remember you have the power to change it. Read more about Kath’s story here: BCNA’s My Journey has articles about lifestyle factors and breast cancer. For more information about alcohol as a risk factor for cancer, read the Cancer Council’s Alcohol and Cancer National Position Statement.

from it. It was confronting when I stopped and I often felt exposed and awkward. But it became easier over time. The more I socialised without drinking, the more I enjoyed it, because I was being my true self. People understood why I didn’t want to drink during treatment. However, once my treatment ended, most thought I’d start again. They’d say things like, ‘ Don’t you want to have a champagne to celebrate the end of treatment ?’. But I still didn’t want to drink. As I became more educated about alcohol being a risk factor for breast cancer and other cancers, I was shocked and annoyed that information is not made more available. None of my doctors spoke directly about it. I think it’s important for women to know about the risk so they can make informed choices about their

Issue 93 | December 2022


back to work after breast cancer treatment Transitioning

Jo Lewis

R eturning to work after you’ve taken time off for breast emotions. Some people can’t wait to get back to work and a sense of normality, while others feel nervous about how they’ll cope. So, how can you ensure your return to work works best for you? cancer treatment may bring up some mixed The Beacon asked Jo Lewis, an Occupational Therapist working as a Clinical Program Consultant with CancerAid and Associate Lecturer at the University of Sydney, for her advice on how you can take charge of returning to work.


TIPS FOR EMPLOYERS TO HELP YOU RETURN TO WORK Many employees say they don’t return to work after cancer because they don’t feel supported by their employer or they haven’t been offered flexible work arrangements to help with their return to work. Some ways your employer can help you feel supported before and after you return to work are: • Take the time to understand breast cancer is a chronic disease. Treatment can have long-term effects on a person’s • S how they care—they could send you an email to let you know they’re thinking of you and care about you, ask if there is there anything they can do for you or let you know there’s no pressure to get back to work. • H elp you stay socially connected with colleagues while you’re undergoing physical, cognitive and psychological wellbeing. treatment. This may include inviting you to a work lunch or another social activity. It’s important for employers to know their responsibilities under disability discrimination legislation. Employers need to consider reasonable adjustments so it is helpful for them to be proactive in planning and offering these.

Before you talk to your employer, be prepared. Make notes about what your job involved before you left work. Think about how you are going at the moment and consider any side effects (such as fatigue or reduced concentration) from the treatment or the cancer itself. Then, based on these side effects, list any duties you think you will find difficult. Also make a note of any ongoing appointments or programs you need to keep up to assist with your recovery and how these might impact your work. Take control of the situation by being proactive. Evaluate your job and capacity to perform, and then go to your employer and let them know what you think you can manage, and that you’d like to make a plan for the future when you’re feeling more able. This conversation will help you and your employer agree on any reasonable adjustments you need. It also shows your employer you’re keen to get back to work and reduces the chances of you taking on duties you can no longer manage. Together, you can develop a return to work plan that establishes realistic expectations for both you and your employer and outlines agreed changes to your tasks and responsibilities.


Your employer and colleagues may be able to better support you if they are educated about the physical, cognitive and psychological impacts of breast cancer. However, deciding how much you want to disclose to your employer and colleagues generally depends on your pre- existing relationship. If you feel comfortable sharing your experience with people in the workplace, it can help them to understand what you’ve been through and be able to provide the support you need.

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Breast Cancer Network Australia


WHAT TO DO IF YOU RETURN TO WORK AND DON’T COPE It can be hard to know what to do when you aren’t coping. Everyone’s circumstances are different, but, if possible, try to reduce your workload rather than stopping work altogether—as you may find it more difficult to return in the future. Consider scaling back to manageable duties or modify your work days, hours or location. If you feel that you’re not coping, the best thing to do is to speak up and not struggle through. Let your manager or direct supervisor know, or perhaps your staff health and wellbeing team if you have one and ask to adjust your return to work program. ACCESS EXTRA HELP TO BECOME WORK READY Everyone’s needs vary after treatment. If you’re struggling physically or mentally, consider seeking help from relevant specialists before or after you go back to work. Speak to your GP as soon as possible for help with accessing: • A n exercise physiologist to help with structured exercise that can improve your physical and mental wellbeing and help to counteract fatigue • A physiotherapist to help prevent or manage lymphoedema • A psychologist to support your emotional wellbeing. Speak to your employer for help with accessing: • Y our workplace staff health and wellbeing team for additional support • A n occupational therapist to undertake a workplace assessment to make sure you have the capacity to perform your duties • A rehabilitation specialist or occupational physician to identify what capacity you have to undertake your duties. You might also consider getting in touch with your people and culture team, superannuation insurer and/ or income protection insurer to see what other assistance and services you may be entitled to.


• Try to remain connected with your employer and colleagues while you’re not working. • Establish any reduced duties in a formal return to work plan and review it with your employer regularly. • Consider flexible/part-time work arrangements. • Notify your employer in advance of any leave you may need to take. • To assist with memory and concentration, take notes, write lists and use a calendar or diary regularly. • Keep a diary of meetings, tasks and important conversations with your manager. • Reach out to your GP, workplace people and culture team and superannuation insurers to see what other services are available to help you. • Access your organisation’s employee assistance program if it offers one. These programs provide free, short-term counselling and emotional support to employees. For more information about the financial implications of a breast cancer diagnosis, view BCNA’s Managing the financial impacts factsheet.




Issue 93 | December 2022





W hen you are implications your diagnosis may have for members of your family. You may be considering having genetic testing to see if there’s a hereditary link. The Beacon spoke with Associate Professor Yoland Antill, Medical Oncologist and Cancer Genetics Specialist based in Melbourne, to find out more about genetic testing for hereditary breast cancer. diagnosed with breast cancer, it’s natural to wonder what WHAT ARE SOME OF THE CLUES THAT INDICATE THERE MAY BE A HEREDITARY BREAST CANCER GENE IN MY FAMILY? Any breast cancer diagnosis indicates there may be a genetic relationship, but only a small proportion have an identifiable genetic change. There is a greater likelihood of a genetic cause for breast cancer if the person diagnosed: • is in their early 40s or younger • h as had other breast cancers or related cancers, for example ovarian cancer • h as been diagnosed with a second primary cancer • h as multiple family members on the same side diagnosed with breast cancer or related cancers such as ovarian cancer

HOW DO I ARRANGE A GENETIC TEST AND HOW MUCH DOES IT COST? You can arrange a genetic test through the public and private hospital systems. To be eligible for subsidised genetic testing, covered by Medicare, you need to have a calculated risk of at least 10 per cent. This means a 10 per cent likelihood of there being a genetic change in genes associated with breast cancer risk, with the majority of that risk related to BRCA1 or BRCA2. If your estimated risk is lower than 10 per cent, you will not be eligible for a subsidised test. However, you can pay the full cost yourself if you want to be tested. For self-funded gene tests, the cost can vary from about $350 to about $500, depending on who is providing the test. This is the case whether you are accessing it through the public or private health system. Once a genetic alteration is identified within a family, then all other testing in the family is funded. In some circumstances, you may be able to receive a funded test through a family cancer clinic. Eligibility varies depending on the clinic.

• h as certain pathology types —for example, triple negative breast cancer is more likely to be associated with certain genes, while HER2 positive breast cancer is less likely to be • is a man who has breast cancer. WHAT GENES ARE ASSOCIATED WITH BREAST CANCER? We each have around 25,000 genes. For every gene you have, you have two copies – one inherited from each of your biological parents. In terms of passing on these genes, you pass on only one copy of your genes to your child. The second gene comes from the child’s other biological parent. If a gene has a mutation, it can result in heritable conditions such as an increased risk of cancer. Based on three large population- based studies, the list of single genes likely to impact breast cancer are BRCA1, BRCA2, PALB2, RAD51C, RAD51D, BRIP1, BARD1, p53, CHEK2, ATM, PTEN and CDH1. WHAT IS A GENETIC TEST? Genetic testing is a simple blood test that can show if you carry one of the breast cancer genes. The test needs to be done first on a person in the family who has had a breast cancer diagnosis. If their test result shows that they carry a breast cancer gene, other family members can be tested to see if they also carry it.

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Breast Cancer Network Australia


Associate Professor Yoland Antill

WHAT DOES A GENETIC TEST INVOLVE? You may need a referral from your doctor to a family cancer clinic and have the choice to see a genetic counsellor, geneticist or genetic oncologist. Some people with breast cancer have genetic testing arranged by their own specialists. You will need to provide information about your own and your family’s medical history and have blood taken for the genetic testing. This will then be screened for the most common breast cancer genes. IF THE TEST IS ‘POSITIVE’, WHAT DOES THAT MEAN? A positive test result is referred to as a ‘ pathogenic variant found in the gene ’. This means there is a genetic change in the gene that alters its function. If the test has been done by, for example, a breast surgeon, you will be referred to a family cancer clinic for genetic counselling. If the test was done through a family cancer clinic, they will offer counselling. Counselling includes explaining the gene type and related risk of breast cancer, which differs depending on the gene.


ARE THERE WAITING LISTS FOR GENETIC TESTING? Waiting times for genetic testing vary in each state. They depend on the individual’s risk and the health system’s capacity to deliver the service. Tests for people considered to have a higher risk of developing breast cancer will generally be prioritised over someone who has a much lower risk profile. WHAT DOES THE FUTURE HOLD FOR GENETIC TESTING? Clinical trials are underway to explore what is known as polygenic risk. Looking at this polygenic risk assessment alongside single gene changes might give us an even more tailored understanding of an individual’s cancer risk but also for people in families where there are no identified genetic changes. It might provide more tailored understanding of risk for individuals to be able to plan how they’d like to manage that risk. For more information, listen to Yoland discuss this topic in the Upfront about breast cancer podcast episode Breast cancer, genes and family. Read more about genetics and the risk of breast cancer in BCNA’s My Journey.

OF GETTING BREAST CANCER? Genetic counselling will include your options. These may be to: • u ndertake higher surveillance to improve the chances of early detection • consider preventative treatment, such as hormone-blocking therapy or risk-reducing surgery. You will also be counselled regarding risk factors for related cancer types and how these might be managed in terms of screening or prevention. HOW HAS GENETIC TESTING CHANGED? consuming. Now improvements in technology mean multiple genes can be tested at once and the test is much more widely available and affordable. The risks of cancers may be In the past, gene testing was very expensive and very time dependent on how many people have been affected in your family and the gene in which the variant has been identified. This might range from a moderate to a high risk. The age at which risk starts to increase might also be dependent on which gene is involved and your family history.

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I want to share my story to bring some hope to other people who have recently been diagnosed with metastatic breast cancer. I was 33 years old and 33 weeks pregnant with my first child when I was diagnosed with de novo metastatic triple negative breast cancer in July 2020. I was induced with my baby, Willow, at 36 weeks so I could start treatment. I thought I would have six months with her at best. When my doctor confirmed the cancer had spread to my liver and bones, I broke down in tears. I remember saying to my mum, ‘ I’m going to die ’. But then something inside me switched and I thought, ‘ Okay, I’ve got to look after my daughter. What can we do? Let’s get started’ . I began chemotherapy the following week, when Willow was five days old. In September 2020, I found out the chemo had helped shrink my tumour and slow the progression of my metastatic breast cancer. Earlier this year, I told my doctors I’d like to have a break from treatment because it’s so taxing on my body. I was trying to look after Willow and I wasn’t enjoying life. My scans are still looking positive, I feel healthy and, because I don’t have to go for weekly blood tests, I sometimes even forget I have cancer. I have my life back. Obviously I worry about the future, but my doctor assures me there are further treatments we can try if needed. That gives me hope. There are also new drugs being developed through clinical trials to treat metastatic breast cancer and I’m happy to contribute to anything that can help other people. I’m a nurse but I stopped working so I could focus on making memories with my daughter and family. Now I feel ready to go

back to work. I want to rediscover my identity again. I can relate a lot more to my patients now, especially those in pain, as I have had to manage pain from my cancer and the side effects of treatment. I’ve got a different outlook on nursing and life in general. When I was first diagnosed, I couldn’t find many positive stories for my type of cancer. Yet here I am, two years later, still fighting and thriving. My experience has made me a stronger person. I don’t care for trivial things. I value family a lot more. I focus on the good things in my life. My message to others with metastatic breast cancer is to remember you are still your own person, with a career and family and hobbies. Cancer doesn’t define you. WHAT IS DE NOVO METASTATIC BREAST CANCER? Sometimes people are found to have metastatic breast cancer when they are first diagnosed with breast cancer. This means that the previously undiagnosed breast cancer cells have spread to the other parts of the body such as the bones, lungs or liver. This is referred to as ‘de novo’ metastatic breast cancer, meaning the breast cancer is metastatic from the start. You can read more about metastatic breast cancer on BCNA’s My Journey .

Kate Willis and her daughter



For more information about managing pain associated with metastatic breast cancer, visit BCNA’s My Journey.

December 2022 | Issue 93

Breast Cancer Network Australia



BEING A BREAST CARE NURSE IN REGIONAL AUSTRALIA D onna Wellington is one of hundreds of breast care nurses based across Australia who provide information, period for women to see a specialist in the public health system in Brisbane. Now I think it may be up to three years.’

Donna Wellington

A BREAST CARE NURSE WORKS CLOSELY WITH YOU TO: • A nswer your questions so you’re well-informed when making decisions. • Provide evidence-based information and specialised support. • C oordinate and collaborate with your multidisciplinary team. • C onnect you with support and services, including financial and psychosocial. • A ssist with your recovery by providing information and education on exercises, suportive bras, prescribed pain management, as well as drain and wound care.

Connecting people with support services is a key part of Donna’s role. For those needing financial support, Donna promotes the Patient Assisted Travel Subsidy Scheme, which provides remuneration for kilometres driven to Rockhampton and will fund travel to Brisbane or other centres for patients to have a PET scan as Rockhampton does not have a PET scanner. She also accesses funds through the local Breast and Prostate Association, a volunteer organisation which helps people with breast or prostate cancer who are financially disadvantaged. ‘Since COVID, the number of people we see has more than doubled, due in part to a lot of people moving up from the south or seeing people who did not attend screening mammograms or see their GPs during COVID. I am now seeing up to eight new referrals per week,’ she says. While Donna hopes for more breast care nurses to share the increasing demand for care, she remains invested in providing essential care for women and men across the region. ‘I get more from my patients than I give,’ says Donna. ‘Their stoicism and their heroism are amazing. That’s why I keep doing what I do.’

counselling and support, and help to coordinate care after a breast cancer diagnosis. Based in Rockhampton Central Queensland, Donna is the only full- time breast care nurse employed by Central Queensland Hospital and Health Service, which covers an area of 114,000 square kilometres, including Longreach, a 10-hour drive west. cancer. However, Donna’s role is unique in that she also arranges diagnostic testing for people in rural and remote areas who have had an abnormality detected by a mammogram. In addition, she supports people with metastatic breast cancer by providing them with resources such as BCNA’s My Journey , the Cancer Council’s online counselling service and local counselling services. Donna works with medical oncologists and specialist palliative care physicians and nurses and supports people to be well informed and connected throughout their treatment and recovery. Like many people living in rural and regional areas, she says those in Rockhampton and the surrounding towns face additional challenges, such as travelling long distances for treatment and limited access to services. ‘Reconstruction surgery is not currently offered in Rockhampton, so women have to go to Brisbane, which is a seven or eight hour drive from here,’ says Donna . ‘Before COVID, we had a 12-month waiting Most breast care nurses care for people who have already been diagnosed with breast

FIND A BREAST CARE NURSE To see if there is a breast care nurse in your area, search McGrath Foundation’s breast care nurse directory or call 1800 183 338.

Find out more about travel subsidy

schemes in your state or territory in My Journey .

Issue 93 | December 2022


Dr Sonia Fullerton

Planning for the future: ADVANCE CARE PLANNING

A fter a breast cancer diagnosis, some people feel like they lose a sense of control over their bodies and lives, even when they have been actively involved in making decisions about their treatment. Imagine, then, not being consulted about your own medical treatment. This could happen if you become suddenly unwell or are involved in an accident. Would your loved ones know what you wanted? This is an issue Dr Sonia Fullerton experiences on a daily basis as a physician in palliative care medicine and as the Deputy Chief Medical Officer at the Peter MacCallum Cancer Centre in Melbourne. She’s a firm advocate for everyone preparing an advance care plan so they maintain control over the medical treatment they receive if they lose capacity. ‘ Having an advance care plan means that even if you’re very unwell and can’t verbalise your wishes, you will still be heard,’ Sonia says. ‘It’s not like a will, which is a plan for what happens after you die. An advance care plan is about what happens to you while you are still alive. It ensures doctors can make treatment decisions in line with your preferences.’ While the terminology and process can vary from state to state, there are two main components to advance care planning: 1. C hoosing a substitute decision maker who can make medical treatment decisions on your behalf.

2. O utlining the decisions you want that person to make. This may include writing down your values and preferences, or whether you consent to certain treatments or medical interventions. Your decision maker can only act on your behalf when you lose capacity. Your capacity will be assessed at the time by a medical practitioner. Once you have made a plan, make sure people know about it by: • u ploading your plan to your My Health Record • g iving a copy to your substitute decision maker, your GP, and any other health services involved in your care • carrying an image of the document on your phone or a copy in your bag, especially if you are travelling interstate. If someone doesn’t have a medical decision maker, a medical team will generally go through a list to work out who to ask for consent, including the person’s partner or spouse, and then adult children and other relatives. ‘Anyone at risk of losing their medical treatment decision making capacity should consider advance care planning. It’s particularly relevant for people who are older, or for people who have life-limiting conditions such as cancer, especially metastatic disease, or who have had a notable change in their health,’ says Sonia. ‘And, remember, you don’t have to wait for your doctor to bring up an advance care plan with you—you can raise it with them anytime .’

For more information, including advice specific for each state or territory, visit the Advance Care Planning Australia website .

CHOOSING YOUR SUBSTITUTE DECISION MAKER Your decision maker doesn’t have to be a family member, but whoever you choose needs to be someone: • you have a close and continuing relationship with • who knows your wishes and understands they need to represent them • who is able to make decisions, understand medical information and confidently negotiate or advocate on your behalf. Generally, you don’t need to appoint someone if you’re married or in a de facto relationship and your partner is the person you would choose to appoint. If you identify as LGBTIQ+, an advance care plan can reinforce your partner’s role in your life and ensure their rights in your end-of-life

decision making are recognised.

Listen to BCNA’s Upfront about Breast Cancer podcast episode with Sonia to hear more about advance care planning or read more in My Journey .

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Breast Cancer Network Australia



Jodie Lydeker

J odie Lydeker was 40 years old when she was diagnosed with early breast cancer and started her blog, She. Me, part-way through treatment, as an outlet for her to write about her experience and allow herself time to breathe, connect and reflect. The Beacon asked Jodie, who is a BCNA Consumer Representative, to share an excerpt of one of her posts and how writing has helped with her recovery and beyond. My blog is like a mirror image of me—a beautifully-imperfect-work-in- progress. It reflects the vulnerability that cancer has created in my life and my hard-nosed pragmatism. Over time, my ability to honour how I was feeling became more important in my longer-term recovery than focusing on what I thought I should be thinking or doing. While I had previously considered my emotions a weakness, I now know that my greatest strength comes from owning them. What I’ve also discovered over the last four years is that there is no such thing as ‘ normal ’. Most of my posts are emotional reflections about how I have felt at different times, so they’re a mishmash of raw, honest thoughts in the context of acceptance, awareness, grief and compassion. I’ve also included some practical learnings to help others carve out a sense of agency, courage and self-management. My hope is that, through connection to my stories, someone else may feel less alone or can use my words as an in-between until they find their own. Below is an excerpt of one of my blog posts that speaks about

helpful tips to help you manage the time that follows a breast cancer diagnosis. How to project manage the chaos of a cancer diagnosis. The first few weeks of a cancer diagnosis can resemble a tsunami of hospital admissions, tests, scans, specialist appointments, and forms. As a career project manager, I knew that planning was the key antidote to chaos. Here are a few tips and tricks about how I project managed my way through. Create your own project management tools—the first thing I bought (other than a cold-press juicer!) was a zip-up A4-size folder in my favourite colour that I covered in cat stickers. Keeping hard copies of all your bits and pieces in the one place is handy to access as you move between appointments, such as doctors’ business cards, pathology reports, and referral letters. A shared calendar can also help you and others keep track of where and when comes with some big challenges, especially terminology and bills. Whether you are a private or public patient, you have choices. BCNA’s Managing the financial impacts of breast cancer factsheet has some great tips and outlines a range of benefits, subsidies and services that may help you. Information overload will happen at some point (because there’s only so much data our brains can take in crisis-mode). You might delegate permission to someone in your family or a close friend to speak about your financial or medical issues on your behalf or have someone send group update you need to be somewhere. Navigating the health system

emails or texts to others about how you’re going. Above all else, nourish and nurture your body and your mind—these are things you can control. This is about getting comfortable with asking for what you need and accepting that sometimes it will make others uncomfortable. For example, say ‘ Yes ’ to people when they ask if they can help, like picking up groceries, running errands or taking you for a drive to the beach. I asked a friend to give me a buzz cut the week before my hair was due to fall out from chemo because it was one part of the timeline that could happen on my terms. On the flipside, be ok with saying ‘ No ’ to people when you need to rest and don’t feel up to having visitors. There were times when I just needed to binge watch ‘Selling Houses Australia’ rather than listen to one more [well intentioned] person say, ‘ Everything will be ok ’. There is no right way to feel—you need to find what works for you that helps you to process what you’re feeling—talk to someone, read, write, or meditate. If you don’t have access to the support you need, outsource it, like calling BCNA’s Helpline (1800 500 258), getting a referral to a psychologist or connecting with online forums like BCNA’s online network . Even with many voices of support and hands to hold, this time in your life can feel like the loneliest path to walk. But if your mind is strong, your body will follow its lead. Read this blog post and many more via Jodie’s blog, She.Me

Issue 93 | December 2022



We were thrilled to attend the Australasian International Breast Congress (AIBC) in Brisbane in October where we had the opportunity to host several events, present at various sessions and launch a project lead by the Policy and Advocacy Team. The congress was a wonderful opportunity for BCNA to connect with and hear from leading health professionals from Australia and New Zealand and discuss topics and issues that inform our policy and advocacy agenda.

Metastatic Breast Cancer Advisory Group, Dr Andrea Smith hosted a breakfast that brought together health professionals from all over Australia. During the morning, we announced the launch of our Issues Paper: Making metastatic breast cancer count—No longer hidden in plain sight , that seeks to highlight the current gaps in data and reporting of stage of diagnosis and recurrence, that are preventing us from advocating, planning for, and investing in care for those living with metastatic breast cancer. It’s important to know the number of people living with metastatic breast cancer so that the health system can meet their needs. The paper estimates that there are over 10,000 people living with treatable but not curable metastatic breast cancer in Australia, however,

as Australia’s cancer registries are currently not mandated to record cancer recurrence or stage of diagnosis, we do not know the exact figure. BCNA is calling for national leadership, investment, and accountability, as well as legislative change, to ensure those living with metastatic breast cancer are counted and made visible. We would like to acknowledge Dr Andrea Smith, Jodie Lydeker, Dr Sally Lord, Professor Dianne O’Connell, and BCNA’s Strategic Advisory Group and Metastatic Breast Cancer Lived Experience Reference Group for their contributions to the issues paper.

HEALTH PROFESSIONAL BREAKFAST AND ISSUES PAPER LAUNCH On Metastatic Breast Cancer Awareness Day, BCNA’s Director of Policy, Advocacy and Support Services, Vicki Durston and Chair of the

Read Issues Paper: Making metastatic breast cancer count Watch the launch of the Issues Paper

December 2022 | Issue 93

Breast Cancer Network Australia


BRINGING OUR CONSUMER REPRESENTATIVES TOGETHER Alongside the congress, the Policy and Advocacy Team hosted a Consumer Representative workshop, bringing together 11 Consumer Representatives from across Australia. The workshop provided an opportunity for them to network, strengthen relationships, and contribute to BCNA’s priority areas of work. The Consumer Representatives attended several key conference sessions including Controversies in Reconstruction, Survivorship, Palliative Care and Breast Cancer 2030, before coming together to discuss the key learnings. Discussions focused on how the group could help inform and guide the implementation of the key recommendations from BCNA’s 2021 Breast Reconstruction in Australia report and the year 3 policy and advocacy priority areas in relation to survivorship and raising awareness of the unmet needs of people living with metastatic breast cancer. Thank you to those who joined us and continue to inform our policy priorities.


A CONSUMER’S PERSPECTIVE OF BREAST CANCER IN 2030 We had the honour of closing the congress with BCNA CEO Kirsten Pilatti sharing our vision of what we hope to see in breast cancer care by 2030. This included increased accessibility to a breast care nurse, measuring optimal care, counting metastatic breast cancer, a patient-centred health system, access to precision medicine, a stratified screening program, access to pyscho- oncology support and for all health professionals to have access to communication training. We hear all too often about the lack of personalised and shared care between our health system, health professionals and those diagnosed, and acknowledge that everyone has different needs and personal circumstances, so what is determined to be the best care for one person, may be completely different for the next. During her speech, Kirsten acknowledged health professionals and their incredible contribution to improving breast cancer care for consumers, but also noted that there is so much more work to be done. ‘By 2030, we want to be able to travel this country and hear that patients feel heard, supported and not crushed by their experience ... I hope we have let the hidden ones—our First Peoples, our women and men with metastatic disease, our LGBTIQ+ communities, culturally and linguistically diverse and regional communities, speak louder than ever before and that their experiences have improved because of it,’ she said.

several BCNA staff members and Consumer Representatives were given an opportunity to speak on various topics, sharing their insights and knowledge. Policy and Advocacy Project Officer Julie Rae presented on supporting LGBTIQ+ communities, while Consumer Representative Dr Andrea Smith presented on her experience of survivorship as a person living with metastatic breast cancer. BCNA CEO Kirstin Pilatti was the chairperson for the Controversies in Reconstruction session where Senior Policy Officer Sam Mills and Consumer Representative Jodi Steel presented on the consumer voice informing the future of breast reconstruction in Australia. We also had BCNA Strategic Advisory Group member, Psycho-oncology Cooperative Research Group Professor Jane Turner present on fear of recurrence and how common it is, and Clinical Psychologist Dr Charlotte Tottman present on whether it is possible to conquer fear of recurrence.

Issue 93 | December 2022


Crowne Plaza Hawkesbury Valley hosted a two-day high tea

BREAST CANCER AWARENESS MONTH EVENTS Thank you to those who supported BCNA during Breast Cancer Awareness Month by hosting an event! AROUND THE Network

Roar Fitness WA hosted a fundraising brunch and were joined

by BCNA member Pieter who shared his breast cancer experience

The Westgate Tunnel Project’s Women in Construction Committee raised over $45,000 throughout October

The Valley ‘walk of solidarity’ in support

and memory of those affected by breast cancer

Girls Night at The Valley in support of BCNA

ESTEE LAUDER COMPANIES AND SUSSAN MINI-FIELD OF WOMEN During October, BCNA major partner Sussan and partner Estee Lauder Companies hosted Mini-Field of Women at their head offices, allowing staff to write a tribute message or message of support to those affected by breast cancer.

Celebrating the 30th Anniversary of The Estée Lauder Companies’ Breast Cancer Campaign globally, The Estée Lauder Companies’ team featured a BCNA Mini Field in their Australian Head Office during October to encourage staff to reflect and attach their own personal messages of support.

Sussan hosted an office ‘Pink for good’ afternoon tea and was joined by BCNA CEO Kirstin Pilatti and BCNA member Aimee

who shared her lived experience of being diagnosed with breast cancer while pregnant during COVID lockdowns.

December 2022 | Issue 93

Breast Cancer Network Australia


BALLARAT CLARENDON COLLEGE On Friday 2 September, Ballarat Clarendon College which hosted its 16th Players for Pink football match against Ballarat Loreto College. The annual game between the school aims to raise awareness and pay tribute to people in the local community affected by breast cancer. With both schools putting on their own fundraising activities throughout the week including bake sales, sporting activities and Ballarat Clarendon College’s Boarding House concert. We are very grateful for your incredible support!

Charlotte Gorman and Lily Corboy

GET TO KNOW YOUR LOCAL BAKERS DELIGHT FRANCHISEE, HIGHTON, VIC Meet Danielle who has been part of the Bakers Delight family for 34 years! Her family has owned the Highton bakery for nearly 32 years, and she became the franchise owner in 2016.

Danielle and her incredible team at Bakers Delight Highton have raised over $190,000 in the last 16 years for BCNA. BCNA has a special place in Danielle’s heart, as she has seen firsthand what goes on behind the scenes to support the women and men who have been diagnosed with breast cancer. ‘My mum sadly passed away from breast cancer eight and a half years ago and my sister, who was diagnosed 14 years ago, is our proud survivor. I love being involved in the Pink Bun campaign every year to help raise money to support those diagnosed with breast cancer during an incredibly daunting and challenging time in their lives.’ ‘I want to give BCNA and all their members all the credit they deserve! I think everyone does a fantastic job supporting and educating each other. We will continue to keep supporting the Pink Bun campaign and BCNA now and well into the future!’ Danielle says.

BCNA Foundation Partner

BCNA Major Partners

Issue 93 | December 2022


This Christmas, help people like Emily

not always readily and easily available. By donating to this year’s Christmas Appeal, you can help BCNA be a strong voice in continuing to advocate for better access to supportive care services. For Emily, it was her counsellor who helped her deal with the uncertainty of living with metastatic breast cancer. ‘I know my body is strong. It’s very good at healing. It might take some time, but it’ll be okay. It’s the impact on my mental health that I need the most support with.’ —Emily To donate visit the BCNA website or call BCNA’s Helpline on 1800 500 258.

just five months old. After completing six months of treatment, Emily found out her cancer had spread. She was devastated. ‘I don’t know how long I have to be with my girls.’ —Emily If you or a loved one have been diagnosed with breast cancer you know that treating the cancer is only part of the journey. It’s also important that people have access to supportive care services, like mental health support to look after their emotional wellbeing, or other allied health services, like exercise

C hristmas is a fun time in most households, but we know it can also be hard for many, particularly those diagnosed and living with breast cancer. BCNA’s 2022 Christmas Appeal features young mum Emily. She was only 29 when she was first diagnosed with breast cancer. She had two daughters, her youngest

physiology to help relieve symptoms and side effects of treatment. However, those services are


Keep an eye on our social channels until 12 December to see offers from Bakers Delight, Hello Sunday, Monday Distillery, Entertainment Membership and many more! Support those who continue to support us all year round by purchasing a gift for one of your loved ones (or yourself!) this Christmas.

Gifts range from $15 to over $200, with a percentage of proceeds from every gift donated to BCNA to continue to support Australians affected by breast cancer. For more information and to purchase a gift, visit the BCNA website.

Some of BCNA’s major partners, along with our regular and new licensing supporters, are participating in our 12 Gifts of Christmas campaign.

December 2022 | Issue 93

Breast Cancer Network Australia


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