ISSN 1834-5921
BREAST CANCER RESEARCHERS EMBRACING THE VOICE OF BCNA CONSUMER REPRESENTATIVES
COVER STORY ACCEPTING ALL THE HELP YOU CAN GET
What helps when you don’t have much support
ASK THE EXPERT
SUPPORT NEEDS AFTER A DIAGNOSIS
BREAST CANCER NETWORK AUSTRALIA’S MAGAZINE | ISSUE 94 | MARCH 2023
Letter CEO FROM THE
CONTENTS
LISTEN, WATCH, READ
Triple negative breast cancer resources
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Letter from the CEO
NEWS
W elcome to the first edition of The experience, or how they navigated not having the support they may have needed. BCNA member Glenda describes her experience of different levels of support throughout her first breast cancer diagnosis in 1996 while living in regional Australia and compares this to her second diagnosis 26 years later. We speak to Dr Charlotte Tottman about why support may look different for everyone and get a sneak peek into an exciting upcoming launch. We also hear from three women who talk about not receiving the support they needed during difficult times and how they overcame this. Beacon for 2023. In this edition, we hear from several of our members about the support they received during and beyond their breast cancer Towards the end of last year, we launched our new- look Online Network . The platform now has improved navigation to ensure our online users have the best possible experience. The Online Network provides a space to connect to others, ask questions and hear experiences. If you aren’t part of the community already, I’d highly recommend you read the article on page 3, which explains the updates to the site, as well as how you can join. This year we will be celebrating 25 years of BCNA. Not only do we want to celebrate our achievements, we also want to celebrate you, our network. With you, we have come such a long way since Lyn Swinburne started BCNA in 1998, envisaging an organisation that would positively influence the way breast cancer was perceived in the community. Now, we have built a strong, resilient and engaging network of over 175,000 individuals. Keep your eye on our website , our social media posts and the next edition of The Beacon to hear more about the big impacts we have made over the past 25 years. We have already kicked off this year with a number of events. Our consumer representatives were involved in our first Think Tank event (read more on page 3) and Elsternwick Park in Melbourne turned pink a few weekends ago for Carman’s Fun Run (see images on page 18). We also held our first digital event, Managing stress and improving wellbeing with mindfulness and meditation , in which we were joined by Professor Craig Hassed OAM, Dr Emma Warnecke and BCNA member Iris Bar. If you weren’t able to join us live or would like to watch the event again, you can access the video via the BCNA website . Last year we were thrilled to bring back our Information Forums, which enabled us to connect with our communities in Rockhampton, Launceston and Ballarat, as well as hosting an online event for those in Wagga Wagga and surrounding areas. We are looking forward to heading over to Port Lincoln in March for
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BCNA News
STORIES
PODCAST SERIES
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Accepting all the help you can get
In conversation with Shananne and Kate: Under 40 and experiencing breast cancer
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What helps when you don’t have much support
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Ask the Expert: Support needs after a diagnosis
INTERACTIVE DIGITAL EVENT ASK THE EXPERT
10-11 Then and now: How support has changed 12-13 Tough enough to wear pink and walk the talk with BCNA
Triple negative breast cancer with Dr Nick Zdenkowski
our first Information Forum for the year– we hope to see you there! There will be more information about upcoming Forum locations by email, social media and on our website . After much anticipation, we have confirmed, in collaboration with Melbourne Football Club and the MCG, that the Field of Women will be staged prior to the AFL Round 23 Melbourne v Hawthorn game at the MCG in late August. On page 16 and 17 we share more exciting updates, including that our Foundation Partner Bakers Delight and Major Partner Red Energy have signed on as our major event partners. Plus, on page 19 you’ll hear about the Pink Bun campaign that will be launching in May. March is Lymphoedema Awareness Month and 3 March is Triple Negative Breast Cancer Awareness Day. BCNA has a range of resources on these topics in various formats, including those on page 2. If you would like more information, call BCNA’s Helpline on 1800 500 258 or email helpline@bcna.org.au. Please note that we have recently updated this email address. While this year is already off to a busy start, remember that it’s okay to take it day by day. BCNA is here to support, connect and empower you every step along the way. We hope you can join us as we celebrate this milestone year and our incredible network. Together we have already achieved so much, and we’re sure there will be many more achievements to come.
14-15 Breast cancer
researchers embracing the voice of BCNA consumer representatives
Triple negative breast cancer Types and subtypes of breast cancer Triple negative metastatic breast cancer treatment
16-17 BCNA’s 6th Field of Women is back!
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Around the Network
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Fundraising activity
Lymphoedema resources
March 2022 edition - Ask the expert: Lymphoedema (pages 16–17)
INTERACTIVE DIGITAL EVENT ASK THE EXPERT
Breast Cancer Network Australia Level 1, 293 Camberwell Road, Camberwell VIC 3124 1800 500 258 contact@bcna.org.au bcna.org.au Editor: Amelia Cox Designer: Justin Dymott Contributors: Jeanie Watson, Lisa Berger and Ruth Williams
Living well with lymphoedema with Maree O’Connor
Lymphoedema and breast cancer Treatment for lymphoedema Reducing your risk of lymphoedema
Kirsten Pilatti Chief Executive Officer
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March 2023 | Issue 94
Breast Cancer Network Australia
bcna.org.au
Issue 94 | March 2023
News BCNA THINKING, SHARING, CONNECTING AT THINK TANK 2023
Accepting all the help you can get
HELPFUL RESOURCES
COVER STORY
Renee
Read the June 2022 edition of The Beacon , ‘How to be there when you don’t know how to be’ (pages 6–7). BCNA’s My Journey has articles and resources about young women and breast cancer, and how you can support someone with breast cancer . Listen to the Upfront About Breast Cancer podcast, Episode 39: In conversation with Shananne and Kate: Under 40 and experiencing breast cancer.
In March 2022, BCNA’s Policy & Advocacy Team hosted its first Think Tank event in Melbourne, bringing together 21 BCNA consumer representatives from across Australia. The event was such a success that Think Tank 2023 was born. Less than a year after the first Think Tank, BCNA’s consumer representatives from across Australia gathered again recently in Melbourne across 27 and 28 February to continue the conversation. Think Tank 2023 celebrated the value of consumer voices and explored building the capacity of BCNA’s Seat at the Table (SATT) program. A number of researchers presented at this year’s Think Tank, highlighting the contribution BCNA’s consumer representatives made to their research projects as advisers with a lived experience. A full report on Think Tank 2023 will be featured in the next edition of The Beacon .
D uring my treatment, I was exhausted and had trouble sleeping. I also found some foods tasted metallic. Yet I was never sure if these were treatment side effects or because I was 12 weeks pregnant – which was when I found out I had triple negative breast cancer. Once we knew it was safe to continue the pregnancy, my husband Trevor and I were able to share the news with friends and family before I went in for my first chemo at 15 weeks. If you’re diagnosed at a young age as I was – I was 33 – it makes sense to talk about the impact of treatment on fertility. In my case, it was relatively straightforward because I’d already been through IVF for my daughter, who was two, and my second pregnancy. I knew I had the option to use our stored embryos in the future. At the start, people were amazing. Friends and family dropped off meals and my sister-in-law even organised a GoFundMe to help us pay for some treatment. As COVID spread, it was tricky to get other kinds of support. No
and up-to-date information. Both were really helpful. I connected with a few other services as well, including an Australian and New Zealand Facebook group for women diagnosed with triple negative breast cancer. Mummies Wish sent small gifts for the kids, such as colouring-in books to keep them entertained, and arranged cleaners, meal deliveries and petrol vouchers. This practical support made a huge difference. I accessed Look Good Feel Better and joined a Facebook group called Defining Breast Cancer whose founder, Jo, was also diagnosed with breast cancer at a young age. She was a great support. When I was first diagnosed, I found it hard to see my future. Now, I know I’m a lot stronger than I ever thought I could be. Being pregnant helped get me through because I got an amazing prize in the end. No matter how old you are or your situation, I recommend you accept all the help you can get. If somebody’s offering to cook meals or if they’re offering to babysit or do the washing – say yes. – Renee Jones
one was allowed to visit, so apart from my husband and my mum, who’d moved in with us to help, I couldn’t connect with people the way I wanted to. I went to chemo treatments alone. Friends stayed in touch from afar, but none of them were by my side or knew what I was going through. I still feel like people don’t really understand what it was like for me. I had recently started a new job and my work colleagues were very supportive but I was working from home so it wasn’t the same as being around people. I was teaching a certificate III in early childhood education and my students were a breath of fresh air. I loved logging in and talking to them every week. I chose to have my treatment in Ballarat rather than Melbourne because it meant that everything I needed was in the same hospital. The chemo nurses came down while I was in labour to help guide the midwives, as I was still experiencing side effects. They all worked so well together. The McGrath breast care nurse was wonderful. She told me BCNA’s website and My Journey were trusted sources for current
OUR ONLINE NETWORK HAS A NEW LOOK!
BCNA’s Online Network has always been a special place where people affected by breast cancer can connect and share experiences in a safe online community. You may have noticed it now looks a little different! Our new Online Network is more inviting, better looking and easier to use. It includes new category icons for you to easily find breast cancer topics and discussions, makes some of our digital resources more accessible, including our Upfront About Breast Cancer Podcast series, has a new events section and has an upgraded search function. Check out the new look and sign up via onlinenetwork.bcna.org.au
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March 2023 | Issue 94
Breast Cancer Network Australia
bcna.org.au
Issue 89 | October 2021
MEMBER STORIES What helps WHEN YOU DON’T HAVE MUCH SUPPORT
If your house is a mess for six months, let it be a mess. Be kind to yourself. Take care of yourself.
Some people don’t receive the support they need during and after a breast cancer diagnosis, for various reasons. The Beacon invited three women to share their experiences and how they managed when they didn’t feel supported.
Donna Wedel Diagnosed: age 40 Year of diagnosis: 2020 Treatment: chemo, lumpectomy, radiation and tamoxifen for 5–10 years Lives with her pet cat Moo in Rockhampton The hardest part of being on my own was getting myself to all my medical appointments. I felt so alone, and this was compounded by the fact I had complex post-traumatic stress disorder, generalised anxiety disorder and major depressive disorder. Every emotion was magnified, so staying motivated was a huge challenge. My beautiful mum, who was 80 at the time and also a breast cancer survivor, was my greatest support but this was mostly limited to chats on the phone. Sometimes she would ask her support worker to take her to visit me. I have two siblings but we aren’t close. When it came to getting support, I mostly had to rely on myself – just suck it up and get on with it! Two things that have really helped me through the hard and lonely times are my love of music, especially Pearl Jam, and my cat Moo, who is a great companion. It’s a hard situation. When you’re used to being self-reliant you want to prove to people that you can do it on your own. But there comes a time when you need to ask for help. There’s no shame in it and people are generally more than happy to help. Trust me, it’s a lesson I’m still learning.
Sherie Smith Diagnosed: age 47 Year of diagnosis: 2020
Some people cooked meals but my kids are fussy so that didn’t really help because I’d still have to cook for them. Others donated money towards unexpected expenses. Parents from school would pick up and drop off my youngest, which meant I could rest. My breast care nurse Sue Monroe was fantastic. She helped me through a very stressful time by getting me on to a social worker to help with some issues my middle child was going through. I feel alone again now my treatment has finished but I’ve since learnt about the Cancer Council’s information and support line. I can call for health advice from a qualified nurse, which has helped when I’ve been worried about symptoms. My health is great right now. I have more energy and can do more. I’ve started working for the uniform shop at a local high school and I feel fantastic. My best advice to others is just to look after you. You won’t be able to do everything you’re doing now but it’s only short term, maybe six months or a year, maybe two. If your house is a mess for six months, let it be a mess. Be kind to yourself. Take care of yourself.
Treatment: lumpectomy, chemo, radiation and hormone therapy Lives with her three sons in Wagga Wagga In November 2020, I was diagnosed with kidney cancer. They did a CT scan of my chest because kidney cancer can spread to the lungs or chest. That’s when they found a lump in my breast. My sons are nine, 22 and 24, so they are old enough to have been able to help me, but they are autistic, which makes everything a bit harder. I think they were also in denial about what was happening. My eldest would come and sit in the hospital with me, but I just needed him to look after his younger brothers. I needed help around the house. I was so tired. It would take me a week to clean the house myself. I eventually got an hour of cleaning each week through NDIS. I always asked them to start with the dishes. Some friends couldn’t deal with the C-word and I stopped hearing from them. They just backed away. I realised I just had to let those people get through it how they wanted to get through it. I had to focus on myself. Having faith in God helped me get through and people from my church did what they could.
in the nearby town were much older than me and did not have the responsibilities I had at my stage of life. It was a two-hour drive to treatment, but I would have to stop multiple times to rest along the way, as I was exhausted and felt unsafe driving with two kids. We moved back to Perth to live with my parents. It was a huge adjustment for all of us but it was the only option, considering my treatment regime and need for emotional support. Rentals were sky-high and I couldn’t live independently without an income. I was unwell and just in survival mode. I saw a clinical psychologist at one point but I was left to navigate it all largely by myself. There were waiting lists and long periods between appointments when you could get them. I experienced PTSD symptoms and severe panic attacks. Two years post-diagnosis I took a big gamble on my future and bought a house. It was a huge risk at the time, not knowing if I’d survive, but I was determined to give my kids the security of a permanent home. I had been out of the workforce completely for nearly a year while I recovered. I was working part time and was the sole breadwinner. It took a few years to build up to working full time again.
In the early days, post-diagnosis, I attended a support group for young women. It was about connection for me, knowing how others felt without having to say anything. As time moved on, I remained connected with some of the women. The best part is that when we catch up now, we hardly ever mention cancer! I have found it to be a long, hard road, but the terrain gets easier to walk on.
NO ONE SHOULD GO THROUGH BREAST CANCER ALONE. BCNA HAS A RANGE OF RESOURCES AND SERVICES TO SUPPORT YOU: Join our Online Network to speak to others going through a similar experience Call our Helpline for support, information and referrals Sign up to My Journey to access a range of articles tailored to your situation Watch and listen to our digital resources , including webcasts and podcasts
Alysia Kepert Diagnosed: age 33 Year of diagnosis: 2010 Treatment: mastectomy, chemo and hormone therapy Lives with her two adult children in Perth At the time of my diagnosis, I had a 10-year-old son, and my other son was six and just starting school. My relationship with my boys’ father did not last beyond my diagnosis. Suddenly I was a single mum, living on a farm and very isolated from family, friends and specialist support. In terms of immediate support, there wasn’t really anything for me. The only people that had experienced breast cancer
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March 2023 | Issue 94
Breast Cancer Network Australia
bcna.org.au
Issue 94 | March 2023
SUPPORT NEEDS AFTER A DIAGNOSIS ASK THE EXPERT
Everyone experiences cancer differently, both psychologically and physically. The amount and type of support you need or want can depend on your individual needs
Dr Charlotte Tottman
S upport after a breast cancer diagnosis can mean different things to different people. The Beacon spoke with Clinical Psychologist Dr Charlotte Tottman to find out what type of support individuals may need and how the people around them can provide it. What is support and what does it look like in a breast cancer experience? Generally, people need practical support such as help with one-off or day-to-day tasks, as well as emotional and psychological support. This can include providing a sense of understanding, compassion and/or empathy. They will likely need the support of someone they can trust, confide in and be vulnerable with. People diagnosed with breast cancer often also need other kinds of support, such as financial support. This can be because of the cost of the treatment itself, loss of income, underinsurance or other circumstances. Why is support different for everyone? Everyone experiences cancer differently, both psychologically and physically. The amount and type of support you need or want
What advice do you have for supporters of someone with breast cancer? My advice for supporters can be summed up as: • listen, listen, listen • don’t assume • keep checking in. What you can see is not necessarily all that’s going on. For example, if someone is starting to look a bit more like their old self, there is often more going on for them than you may realise. Keep checking in, ask how they really are and take the time to sit with them and listen. One question you might like to think twice about asking is if
Consider if there is a specific type of support you can offer, based on your skills. For example, a friend of one of my clients was very good at paperwork. They offered to help my client with her medical insurance paperwork. It relieved a lot of stress and had a very meaningful, financial benefit because my client’s income protection insurance started as soon as possible. There are plenty of skill sets within people’s networks that can be well utilised. Remember, cancer is not a quick- fix situation. Supporters can disappear over time, so try to stay in touch and adapt your support to the changing needs of your friend or loved one.
there is anything you can do. While your intention is good, this question often unwittingly creates additional pressure for the person going through cancer, because they may feel like they have to identify and specify a task for you to do. If you know the person well, try instead to anticipate what they may need and suggest specific options. For example, ask if it would be helpful if you organised takeaway on a Friday night, mowed their lawn on Sunday morning, or picked up the kids from school on Tuesday afternoons. This way, you’ve done the heavy lifting for them in generating the options, and also come up with ideas that you’re willing and able to do.
can depend on your individual needs, as well as how much support you’re prepared to ask for and/or accept. It may also depend on who you are as a person. You may have overcome previous adversities and built up some resilience. Or, you may feel completely overwhelmed by your diagnosis and treatment and need more support. Some people have an easier run of it. Perhaps they experience fewer side effects or find they don’t need to step back from their day-to-day life as much as others. Some end up in hospital or have a very protracted cancer treatment. People living with metastatic disease experience cancer as part of their everyday normal life. It’s so varied. The most important thing to remember is there’s no right or wrong here. It’s more about doing what is right for you. It can be helpful to reflect on your willingness to be vulnerable and to prioritise and care for yourself. Likewise, the people around you may need to reflect on what support they’re willing and able to provide. What can be helpful if you feel disappointed about the support you’ve received? The first thing to realise is your feeling of disappointment is
incredibly common. I haven’t met a client yet who hasn’t, at some point, felt disappointed or let down by a loved one or a friend or a colleague. This means it’s often not really about you, but rather it’s part of the general cancer experience. I think there are two ways to manage disappointment. If it’s a single event, it can be helpful to talk with the person who has disappointed you and let them know specifically what you need from them. You may have to make a judgement call on whether this approach is right for you and your situation. If a pattern has emerged where someone has consistently not been there in the way you need, consider whether they are a good fit for you right now. You may choose to manage the relationship a bit differently. Perhaps reduce the frequency, duration or dynamics of your interactions, such as catching up with a group of people, rather than one on one. Whatever you decide to do, I recommend approaching it in a de-escalating way and gently
SEASON 2 OF WHAT YOU DON’T KNOW UNTIL YOU DO IS COMING SOON! Following on from the success of season 1 of What You Don’t Know Until You Do with Dr Charlotte Tottman , in which Charlotte talks about her lived experience of breast cancer over 10 insightful episodes, we’re excited to be back in your ears with season 2 in April, thanks to our Major Partner Sussan. This season will focus on Charlotte’s clinical experience and will explore topics such as navigating relationships with your treating team, managing behavioural changes and the importance of setting boundaries for self-care. The podcast will be available via BCNA’s Upfront About Breast Cancer website , SoundCloud, Apple podcasts and Spotify.
changing the nature and the dynamic of the relationship.
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March 2023 | Issue 94
Breast Cancer Network Australia
bcna.org.au
Issue 94 | March 2023
HOW SUPPORT HAS CHANGED THEN & NOW:
Glenda and daughter in 1997
Glenda and daughter in 2022
I was first diagnosed with breast cancer in 1996 and then again in 2022. So much has changed in that quarter of a century in terms of the treatment, care and support I received. The first time around, I was 33 and had four children ranging from 15 months to 12 years. We lived on the family property 230 kilometres from the nearest town. I could only go to Townsville or Brisbane for treatment at the time. I had my operation first (a partial mastectomy), then chemo and then radiotherapy. Even though the lump was confined to my breast, they took all my lymph nodes. I ended up staying in Townsville and flying back from Mackay/ Rockhampton and driving back to the property in between treatments. My family helped look after the older kids and my 15-month-old travelled with me. I used to make the trip every three weeks. At that time, an oncologist was based in Mackay two-and-a- half hours away so it wasn’t too far – only a day trip. That went on for the first couple of years. And then it was every six months up to the five-year mark. Being so far out of town, I didn’t have much support from
neighbours. There was another local woman diagnosed after me who I spoke to a couple of times. Fast forward to 2022 when I was diagnosed with triple negative breast cancer in the same breast. By now, my husband and I had moved closer to town and were only 15 minutes from Rockhampton, but I decided to go straight to Brisbane for my treatment and a full mastectomy. I had more support there. I stayed with my mum, my sisters helped with driving me around, and I always had someone with me when I went in for chemo. BREAST CARE NURSE I didn’t have a breast care nurse in 1996. After my operation, I remember someone from Cancer Queensland came to see me at the hospital. She had experienced breast cancer and talked to me about what to expect. For my second diagnosis I have had access to breast care nurses. I contacted one in Brisbane before my operation and we met so that I could ask her what to expect. I knew I was going to have two drains, one on each side, so she let me know what to wear, the bras I needed and how long I was going to be in hospital. She had all the information I needed, which was great.
answer to something specific, like how to manage side effects from treatment, and I share whatever has worked best for me. FINANCIAL SUPPORT The first time around, I could claim some of my travel expenses through MBF. I remember looking into patient travel assistance and it was a big mess. No one seemed to know enough about it and how you could get it. This time, because I’m based closer to my oncologist, I wasn’t eligible for any travel assistance. In some ways, it’s had more of an impact financially this time because I’m working. I’ve got income protection but it’s still not the full amount. My husband works on the farm and nothing’s doing very well because of the weather. Luckily, the oncologist was bulk billing everything and the surgeon was reasonable,
After the operation, she gave me three bras to take home, some ‘knitted knockers’ , a bag to carry my drain and a cushion to put under my arm for support. Most of these had been handmade by volunteers. Thanks to organisations like BCNA, I also received a free Berlei bra as well as vouchers for bras and lightweight inserts. The breast care nurse in Rockhampton, Donna, is fabulous. She told me what I was entitled to, signed me up and said I could phone her if I needed anything. ACCESS TO INFORMATION Back in 1996, we didn’t have the internet and when we did it was crummy. We were flat out trying to get a reliable telephone network. The only resources I was given were printed handouts. I remember getting a book from someone at the hospital that had a little bit of information about what was going to happen. These days, there’s so much information out there. You can join online support groups and BCNA’s Online Network. You can even find groups that focus on your type of breast cancer. I joined a few groups and read a lot, though I don’t really contribute regularly. Occasionally I ask questions online when I want an
which is great. So I really only had out-of-pocket costs for the anaesthetist. I used my frequent flyer points to travel to Brisbane. ONGOING SUPPORT I developed lymphoedema 10 years after my first diagnosis and I’ve also developed neuropathy in my hands and my feet. I have a sleeve for my lymphoedema and access to the best Occupational Therapists (OTs) in the country. The OT in Brisbane gave me a referral for Rockhampton and as soon as I came back the cancer care physio said she’d look after me. I’ve been going to her regularly and she works wonders. I didn’t expect to be diagnosed again 26 years later, but I was more prepared the second time around and the support was generally so much better.
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 . Sign up to BCNA’s My Journey for articles and resources about: • travel subsidy schemes in your state or territory • living in rural or remote areas • lymphoedema, including causes, symptoms and treatment . Listen to Upfront About Breast Cancer Podcast, Episode 43: In conversation with Tania and Fiona: The challenges of living in a rural area following a breast cancer diagnosis .
Many of the advances that are described in this story are thanks to the advocacy from BCNA and other consumer organisations and advocates. This year BCNA is celebrating its 25-year anniversary and we will be looking back at some of our key advocacy wins across many areas, including: subsidising new drugs and therapies; funding for lymphoedema compression garment programs; addressing the financial burden of breast cancer through programs such as patient assisted transport schemes; and increasing access to breast care nurses. We look forward to reflecting on and celebrating these wins, and will continue to advocate for all those with a breast cancer diagnosis into the future.
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March 2023 | Issue 94
Breast Cancer Network Australia
bcna.org.au
Issue 94 | March 2023
Tough enough to wear pink and walk the talk with BCNA I was diagnosed with breast cancer in 2014. When my doctor said, ‘You have breast cancer’, I felt numb. My husband had just
I want to hear that everything is looking great with no hidden surprises. One of my customers, who is also a dear friend, was diagnosed with breast cancer. Like me, she decided to have both of her breasts removed. During her recovery we talked and spent time together going through BCNA’s resources. We have a photo of us together proudly showing our lifelines. She is an inspiration to me. Thomas Cook produced a Twisted X range for the Tough Enough to Wear Pink campaign. When Murray asked me where I wanted to donate a portion of the proceeds, I asked for it to go to BCNA, as this organisation means a lot to me. BCNA made a huge difference when I was first diagnosed, and still does to this day. I’m very thankful for the support around me, including my treating team, my own incredible family, my Thomas Cook family and BCNA, who have all continued to give me strength. We are all ‘tough enough to wear pink’ and walk the talk with BCNA. COMMITTED TO THE CAUSE The owners of family business Thomas Cook Boot and Clothing Co, Murray and Sue Cook, recall the day that Karen told them she had been diagnosed with breast cancer. ‘She burst into tears and said, “Please don’t sack me”,’ says Sue. Karen had been a valued member of the sales team in Western Australia for five years, so when she asked to keep working, the Cooks supported her. Soon, the whole team rallied. ‘At one stage, everyone dyed their hair pink to show their support,’ says Sue. ‘We also designed a new shirt and named it after Karen. When she couldn’t travel to our sales conference in Melbourne,
treatment. They all chose to come to me. The support from my workplace and customers has been amazing. It’s a special bond we all have now. I had a mastectomy and axillary clearance in December 2014 and started chemo in January 2015. I read articles on My Journey and watched the webcasts to learn as much as I could about what lay ahead. The Helpline provided me with great support and practical advice. Sue and Murray gave me a beautiful Pandora bracelet with a charm on it as a symbol of us going through this journey together. During my treatment, Sue sent me an angel charm. Another time, she sent a breast cancer ribbon. Every January, Sue and Murray give me a special charm. Each one reminds me of what I’ve been through and of their ongoing support. My oncologist showed me a pyramid, with different stages and types of treatment. The bottom of the pyramid was my greatest choice, as it showed higher success. I decided to draw my own pyramid, starting with my treatment and recovery, getting fit, being positive and, right at the top, making a difference. In September 2015, I chose to have my second breast removed. That was the point where I decided to take back control of my life and work towards getting well after chemo and eventually being fit again. My scar reaches from one side of my chest to the other. It’s my lifeline of living! In 2016 my son and I set a goal to go to the 14th World Dragonboating Championships 2019 in Thailand. After three years of hard work and determination, we flew to Thailand to compete and my team won gold and three bronze for Australia. It was such an incredible experience. My son won silver and my husband was there cheering us both on. There are still anxious moments after every scan and check-up.
everyone in the team wore the shirt as a surprise for her on the video link.’ When the Cooks decided to create a footwear range and donate a percentage of the sales, they asked Karen which not-for-profit she would choose to support. Without hesitating, she nominated BCNA. Murray and Sue say that now, years later, Karen continues to be their inspiration for their ongoing support of BCNA. If, like Murray and Sue, you’d like to give back and be part of a supportive and engaged community, please consider donating to BCNA. Your gift may support a program or our advocacy work to reduce the financial impact of a diagnosis and improve access to better care. Contact our National Major Gifts Manager, Kathryn Austin, on 0415 534 937 or kaustin@bcna.org.au . HELPFUL RESOURCES We acknowledge that not everyone will have a positive experience with their workplace during and beyond a breast cancer experience. It is also your choice when and if you tell your employer about your diagnosis. These resources may be helpful to navigate your individual situation: Upfront About Breast Cancer podcast: Episode 44: Work after breast cancer: Tackling the difficult conversations My Journey Managing the financial impacts of breast cancer factsheet Cancer Council – Contact your local state/ territory for information on legal support
finished his treatment for cancer and was in remission. When I got home, I sat on the front step of my home crying. All I thought about was telling my two boys, who had just endured their dad’s fight to survive. When I rang my boss, Sue, to tell her about my diagnosis, she was so supportive. I said, ‘Please let me keep working. I need this for me’ . Sue and her husband Murray were incredible. They said, ‘Karen, you just focus on getting well’ .
The team wearing the Karen shirt
As a sales representative for Thomas Cook Boot and Clothing, I travel a lot to see my customers. Sue gave them the option to travel to Melbourne or to come to my home in Perth, where I had set up a showroom with our ranges so that I could still work during my
Karen and her husband in Thailand
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March 2023 | Issue 94
Breast Cancer Network Australia
bcna.org.au
Issue 94 | March 2023
EMBRACING THE VOICE OF BCNA CONSUMER REPRESENTATIVES Breast cancer researchers
THE POWER OF TEXT MESSAGES AS PART OF FOLLOW-UP CARE AFTER TREATMENT PUT TO THE TEST Project: EMPOWER SMS study Researcher: Anna Singleton, The University of Sydney Consumer Representative: Christine Mitchell After her breast cancer diagnosis in 2005, Christine Mitchell’s life spun into a whirlwind of treatments and a hectic schedule of regular meetings with oncologists and her surgeon. While she was happy to be handed back into the care of her GP at the end of her intensive treatment, Christine says it’s important people feel a sense of continuity of care after the intense treatment phase to help you live your best life.
‘There’s so much focus on you and so many people caring for you, and when the treatment phase stops, some people can think, “Who is looking after me now?”,’ says Christine. As a BCNA Consumer Representative, Christine jumped at the chance to use her experience to help inform the design of EMPOWER SMS, a clinical trial into the benefits of receiving regular mental health and healthy living text messages for six months after treatment. The texts also include links to free services, websites and programs that promote health and fitness and generate medication reminders. EMPOWER SMS is the brainchild of Dr Anna Singleton, NHMRC Emerging Leadership Fellow and Senior Research Fellow at the University of Sydney. While a PhD student and research associate, Anna worked on the project under the supervision of breast surgeon and head of research at Westmead Breast
In the study, 80 women received four EMPOWER SMS texts each week for six months, and 80 women received none of the text messages. The trial found those receiving the EMPOWER SMS missed fewer doses of medications compared to those who didn’t receive the messages, 90 per cent found it useful, 67 per cent said it motivated them towards healthy lifestyle changes and 52 per cent said they increased their physical activity levels. ‘By age 50 many women have seen others go through breast cancer treatment and a great deal of women gain weight,’ Christine said. ‘Often women resign themselves to this fate and don’t make the lifestyle changes to help them manage their weight. ‘That’s where EMPOWER SMS was so effective in providing reassurance that they are doing all they can to improve their chances of survivorship and living a better quality of life.’ EMPOWER SMS is currently being rolled out at the Westmead Breast Cancer Institute. You can read more about the study here .
E nsuring people BCNA’s trained consumer representatives (CRs) work with breast cancer researchers, advisory committees, policy makers and service providers across Australia, ensuring that the diverse views, needs and experiences of people affected by breast cancer are considered in research and decision making. affected by breast cancer have a voice is central to everything we do at BCNA. CRs can choose to work on a range of projects, including supporting grant applications, providing input on research projects, advisory committees and information resources. The Beacon spoke to two consumer representatives about the exciting research projects they are involved in. FINDING YOUR WAY THROUGH METASTATIC BREAST CANCER – ONLINE Project: Finding My Way – Advanced randomised control trial (RCT) Researcher: Lisa Beatty, Flinders University Consumer Representatives: Louise Sinclair and Chantal Van Der Linden Can an online psychosocial program improve mental quality of life for people with metastatic breast cancer? Flinders University researcher Lisa Beatty and her research team wanted to find out. BCNA Consumer Representatives Louise Sinclair and Chantal Van Der Linden – who have metastatic breast cancer (MBC) – became curious too, after they were invited as advisers on a study with the research question: can the online program called ‘Finding My Way - Advanced’ lead to
improvements in quality of life for people with MBC when used in addition to BCNA’s My Journey? As part of the Finding My Way – Advanced trial, they contributed feedback to the program’s content and the user experience.
longer and access to support services such as this program are needed more than ever.’ If you are interested in this study, you can get more information and sign up at findingmywayadavanced. org.au or by contacting study coordinator Emma Kemp emma.kemp@flinders.edu.au , or phone 08 7421 9954.
The program includes personal
accounts from women living
with MBC, videos from healthcare professionals, self- management activities, audio relaxation and mindfulness, and information on navigating healthcare, changes to self-image and identity, concerns for family and friends and living with uncertainty and fear of progression. Chantal said she became involved with the trial as part of her role as a consumer representative because of her passion for ensuring people living with MBC have a voice and are made visible. ‘This online program is a much- needed tool for those who have been diagnosed with metastatic breast cancer, and provides support on diagnosis, treatment and living well,’ she said. ‘It is an additional tool to what is provided on BCNA’s My Journey, and assists women with guided self-help activities, information and interactive features. ‘It is important that programs such as Finding My Way – Advanced are offered, as people with metastatic breast cancer are living
Cancer Institute, Associate Professor Elisabeth Elder.
MAKING A DIFFERENCE TO BREAST CANCER RESEARCH If you want to participate in the latest research projects to help improve breast cancer treatment and care, consider joining BCNA’s Review & Survey Group. Find out more here .
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March 2023 | Issue 94
Breast Cancer Network Australia
bcna.org.au
Issue 94 | March 2023
I’ve stood on the Field of Women at the G five times. It is an amazing, uplifting event. You’re there with people who have gone through what you’ve been through. You share an understanding. It’s still a very emotional thing for me. I go for Richmond but I gotta say Melbourne does a fantastic job supporting BCNA and women with breast cancer. They really get behind it. I stand to honour Kelli and keep her memory and legacy alive. She was far too young. People need to realise that breast cancer can hit at any age. When I’m there I look around and see other women who have gone through the same journey as Kelli and are living well. It is a massively good feeling. Helping to raise awareness of breast cancer is a huge motivation for me. If I could save one lovely lady, her husband and her children from going through what I went through, it would make me so happy and I know Kelli would be so proud of me. Tommie Jones
BCNA’S 6TH FIELD OF WOMEN IS BACK!
Standing on the Field of Women for Kelli – #forever37 I lost my beautiful wife Kelli to breast cancer in 2003 when she was only 37 years old. Our boy Tyson was 14, daughter Eden was 10 and youngest Brock was eight at the time. I was 41. After Kel died, I wanted to bring awareness to breast cancer. I have a Pink Lady on the back windscreen of my ute and I wear pink on the weekend. My watchband’s pink and I even have one of my big toes painted pink. I include #forever37 whenever I post on social media as a way of always remembering her.
W e are thrilled that preparation for this year’s Field of Women event is in full motion! The signature event aims to bring the statistics of breast cancer to life in a meaningful and visually powerful way that highlights the personal impact of a breast cancer diagnosis on our community while paying tribute to all those diagnosed. Held previously in 2005, 2007, 2010, 2014 and 2018, the sixth Field of Women this year will be the feature event for BCNA’s 25th anniversary, acknowledging the achievements and advancements made in supporting Australians affected by breast cancer. The event is iconic, impactful and an opportunity to connect as a community, and we invite you all to be part of it.
WHAT TO EXPECT Field of Women will see over 10,000 people standing together on the MCG prior to the AFL Pink Lady Match to form BCNA’s Pink Lady to show collective support and raise awareness of the impact of breast cancer. The main ceremony of the event will profile BCNA through a live and virtual event experience that showcases the strength, courage and emotional journey of breast cancer and the impact it has on the community. There will also be various activities on event day, including a family festival in Yarra Park featuring a Mini- Field of Women tribute, ‘light up the night pink’ across Victoria and other national landmarks around Australia, and the national broadcast of the Melbourne v Hawthorn match, which will focus on the Field of Women and the Pink Lady Match at the MCG. Plus, much more!
EVENT UPDATES • The Field of Women will be staged prior to the round 23 of the AFL match between Melbourne and Hawthorn, on the weekend of 17–20 August at the Melbourne Cricket Ground. • The final confirmation of the day and time will be released in conjunction with the next part of the AFL fixture expected in May 2023.
• Once on sale, for a limited time until the official day and time are announced by the AFL, priority early-bird tickets will be available at a discounted rate of 25% off standard pricing. • Those who are unable to stand with us at the ‘G in person will be able to join BCNA’s virtual Pink Lady by purchasing a place and leaving a message of support for those affected by breast cancer. You will be able to purchase your virtual place via the BCNA website. • Those planning to join us from interstate can keep an eye on our website for details of any applicable travel offers. To ensure you don’t miss the opportunity to ‘Stand with me at the ‘G and receive all the most up- to-date information about the Field of Women 2023, including access to early-bird tickets, offers and priority updates, please register your interest via the BCNA website .
• Tickets to ‘Stand with me at the G’ will go on sale to
BCNA members and early-bird registered participants at the
end of March via Ticketek. • Field of Women standard
A THANK YOU TO OUR PARTNERS The upcoming Field of Women would not be possible without the support of the Melbourne Football Club and Melbourne Cricket Ground along with our Major Event Partners, Bakers Delight and Red Energy. Through their ongoing support of this event, these organisations help ensure Australians affected by breast cancer have access to information and support appropriate to their individual needs, as well as a strong voice, advocacy and representation to influence a better health care system.
pricing for 2023 will be $69 per person. This is inclusive of your Field of Women participant poncho and bag and a General Admission ticket to the AFL match. Other merchandise
items will be available to purchase at point of sale.
100% OF FUN BUN SALES GO TO BCNA
Foundation Partner of BCNA and proud Major Event Partner of BCNA’s iconic Field of Women 2023! SHOW YOUR SUPPORT IN-BAKERY THIS MAY *
*11 - 31 MAY 2023 ONLY.
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March 2023 | Issue 94
Breast Cancer Network Australia
bcna.org.au
Issue 94 | March 2023
AROUND THE Network On Sunday 19 February Elsternwick Park in Melbourne turned pink and welcomed over 3,400 participants for Carman’s Fun Run 2023, raising over $255,000 for BCNA to support all Australians affected by breast cancer. A huge thank you to all participants, volunteers, donors, event staff and our partners, Carman’s and Sole Motive, who all made the day a huge success! CARMAN’S FUN RUN
FUNDRASING ACTIVITIES
PINK BUN 2023! This May, all Bakers Delight bakeries will turn pink for the annual Pink Bun campaign to highlight that it takes a support network to get through a breast cancer diagnosis. The faces of this year’s campaign are three Bakers Delight franchisees, all who have had their own lived experience with breast cancer. Their stories shine a light on the importance of support, from family and friends, workplaces and colleagues, the community around them and, of course, BCNA. You can support BCNA and those in your community affected by breast cancer by buying a Pink Bun this May! From 11 to 31 May, 100% of Fun Bun sales will go to BCNA. Pink Bun Party registrations open mid-April.
In November, members from the BCNA team alongside BCNA CEO Kirstin Pilatti and BCNA Ambassador Raylene Boyle hosted an appreciation event in Perth as an opportunity to connect and re- connect with our amazing WA stakeholders. PERTH STAKEHOLDER EVENT
THANK YOU KONICA MINOLTA Thank you to our valued BCNA workplace giving partner Konica Minolta, which matched all workplace giving donations to BCNA (up to $10k) through the Good2Give platform during February, helping to fund BCNA’s Online Network . Konica Minolta has been participating in workplace giving to BCNA since 2015 and matches a capped amount of its employee workplace giving donations, while also supporting other areas of BCNA through volunteering and printing. Konica Minolta employee and BCNA workplace giver David Healy’s wife is currently undergoing treatment for breast cancer and is appreciative for the support from BCNA and his workplace. ‘I will continue to support workplace giving to help others who may find themselves on a similar path to ours in the future.’ If you are interested in learning more about establishing a workplace giving program in your workplace, please email Eliza Sadler at esadler@bcna.org.au or visit the BCNA website .
OUR THANKS TO BERLEI AND OUR VOLUNTEERS We are grateful for the support of our long-term partner Berlei, which provides a post-surgery bra and soft forms as part of the My Care Kit. There is a small but incredible group of volunteers who individually pack each kit for delivery. Our volunteers are generous with their time and passionate about ensuring kits are packed with care. In 2022, there were over 12,000 My Care Kits sent to women having surgery for breast cancer. We are excited to announce that Berlei is releasing 10 new sizes in the post-surgery bra. The new sizes will include 10DD, 12E, 16B, 20C, 20E, 22C, 22D, 22DD, 24D and 24DD. These new sizes will be available from mid-March. These bras will be part of the My Care Kit and available for purchase on Berlei’s website . If you are interested in receiving a My Care Kit, your breast care nurse can measure you for your size and order one for you, or you can contact BCNA’s Helpline on 1800 500 258 .
The first weekend of December saw hundreds of breast cancer survivors from across Australia and New Zealand participate in the inaugural Pink Paddle Power Dragon Regatta in Docklands Harbour in Melbourne. The day celebrated survivorship while remembering and honouring those affected by breast cancer. PINK PADDLE POWER 2022
13TH BEACH PINK PLAYERS DAY
BCNA Foundation Partner
BCNA Major Partners
13th Beach Golf Links in Barwon Heads Victoria turned pink for their annual Pink Players Day, raising an astounding $40,527!
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March 2023 | Issue 94
Breast Cancer Network Australia
bcna.org.au
Issue 94 | March 2023
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