ISSN 1834-5921
EXERCISE – THE WELLBEING WONDER DRUG
COVER STORY MASTERING MY MIND THROUGH MINDFULNESS
A letter to me
THE POWER OF A CONVERSATION
BREAST CANCER NETWORK AUSTRALIA’S MAGAZINE | ISSUE 91 | JUNE 2022
CONTENTS
LISTEN, WATCH, READ
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Letter from the CEO
NEWS 4
BCNA News
STORIES 5
PODCAST SERIES
Help reduce the financial and emotional burden of breast cancer How to be there when you don’t know how to be
In conversation with Shananne and Kate: Under 40 and experiencing breast cancer In conversation with Tania and Fiona: The challenges of living in a rural area following a breast cancer diagnosis In conversation with Kala and Emily: Living with metastatic breast cancer Through a rainbow lens - Navigating breast cancer as an LGBTIQ+ couple
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Ask the Expert: Mindfulness
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Mastering my mind through mindfulness
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Exercise: The wellbeing wonder drug
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Busting nutrition myths
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Sex and intimacy after breast cancer
LGBTIQ+ experiences of breast cancer and cancer care
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The power of a conversation
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A letter to me
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BCNA Think Tank: A symphony of voices
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A gift of time & Anne’s gift to help make a difference
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Pink Sports Day
Just diagnosed in 2022, what’s next?
20 Around the Network 21 Pink Lady Match
Managing long-term side effects from breast cancer treatments
Editor: Amelia Cox Designer: Justin Dymott Contributors: Jeanie Watson and Lisa Berger
Living well with lymphoedema Managing cognitive changes related to breast cancer treatments 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
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June 2022 | Issue 91
Breast Cancer Network Australia
Letter CEO FROM THE
W elcome to the June edition of the year, it’s important to reflect on the success and progress we have already made together to continue to support Australians affected by breast cancer. We are celebrating the terrific success of the Bakers Delight Pink Bun 2022 campaign. This year, Bakers Delight stores across Australia raised over $1.2 million for BCNA! Thank you to our wonderful campaign ambassadors, BCNA members Megan, Samantha and Nicholas, and all our friends at Bakers Delight – especially the franchisees and their teams – for their hard work. Thank you to everyone who visited their local bakery to buy fun buns or a Fun Bun Friend – we really appreciate your support. The Beacon where we have focused on issues that help us to look after our wellbeing. While it has been an incredibly busy first six months of In May, we were also thrilled by the amazing efforts of local sporting clubs participating in the Pink Sports Day campaign. There were over 300 events, and we saw seas of pink socks, scrunchies and beanies across the country. We also had a fabulous day at the Melbourne Vixens netball PLAY4BCNA match. Thank you to the Vixens for their support and all those who came along on the day. We were also very pleased with the news that Trodelvy was added to the Pharmaceutical Benefits Scheme (PBS) from 1 May. Trodelvy is a new treatment for triple negative locally advanced and metastatic breast cancer. It is one of the new immunotherapy drugs and has been shown to improve progression- free survival by an average of six months and overall survival by an average of 12 months. BCNA has worked closely with key stakeholders to have this drug listed. If you have questions about whether Trodelvy might be suitable for you, we suggest you talk to your medical oncologist. The federal election presented an opportunity for BCNA to advocate for continued improvements to Australia’s healthcare system. Prior to the election, we released our Election Manifesto, which included a call to action in six priority areas that aim to address the key challenges being faced by people with breast cancer today. BCNA looks forward to working with the Federal Government and new Health Minister on the policy and advocacy priorities outlined in the manifesto . We are so excited to be back on the road for the first time since 2019 with our Information Forums. The Ballarat Information Forum in May included presentations from a range of speakers on living well with early breast cancer, and we also hosted a breakfast to bring together people living with
metastatic breast cancer. We were lucky to be joined by medical oncologist Dr Belinda Yeo and clinical psychologist Dr Charlotte Tottman, who both presented at the events. We will be in Launceston on Wednesday 22 June and Port Lincoln (SA) on Friday 29 July. If you live in one of those areas, keep an eye on your emails or our website for your invitation. Our website will list other upcoming forums as we lock them in. With thanks to Sussan, one of our major partners, we have recently released three new podcasts. The episodes feature two members from our network in conversation about their stories, the challenges they face, how they found support and advice they have for those going through a similar situation. The topics cover young women, metastatic breast cancer, and living in a regional and rural location. Visit our website for more information and to listen. This month marks Workplace Giving Month. The campaign this year focuses on tackling difficult conversations. BCNA has released a resource that helps employers to support an employee with breast cancer. We have also established a Financial Impacts Working Group to address financial issues and hardship that many people face. Our news article Let’s work together to create change details our work to reduce the financial burden of a breast cancer diagnosis and our workplace giving program. Thank you for continuing to support BCNA. We hope you too are celebrating the wins, big and small, in your life.
Kirsten Pilatti Chief Executive Officer
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Issue 91 | June 2022
News BCNA IN PERSON EVENTS ARE BACK! FIRST STOP: BALLARAT
THANK YOU
In May we hosted our first Information Forum and breakfast for 2022 in Ballarat. At a breakfast for people living with metastatic breast cancer, we were joined by medical oncologist Dr Belinda Yeo, who spoke about the latest in treatment and care, and clinical psychologist Dr Charlotte Tottman, who spoke about managing the emotional challenges of living with metastatic disease. The Information Forum explored the latest treatments for early breast cancer, managing common side effects of treatment, living well during and after treatment, and coping with the emotional impact of breast cancer. We were joined again by Dr Belinda Yeo and Dr Charlotte Tottman and also breast care nurses Leanne Storer and Joylene Fletcher, and exercise physiologist Tracey Duggan. We loved being back on the road and connecting with our community in person. Thank you to all of those who attended the events! For those who missed it, the on-demand link with a recording of the presentations will be live in the coming weeks via the BCNA website.
THANKS A MILLION! If you have ever walked into your local Bakers Delight during the annual Pink Bun campaign you know how one little fun bun, with pink icing and sprinkles, can brighten someone’s day. For three weeks in May, families from all over Australia visited their local Bakers Delight, some more than once, to support loved ones and those in their community affected by breast cancer. One hundred per cent of all Fun Bun sales was donated to BCNA to help us continue to be the voice for those diagnosed and living with the disease. Pink Fun Buns, along with the all-new Fun Bun Friends, were a big hit making this year’s campaign a huge success. We are so excited to announce that we hit our target and raised over $1.2 million, and we are still counting! We’d like to thank Bakers Delight and all its franchisees, who year after year ‘pink up’ their bakeries and welcome customers down to share their breast cancer stories that inspire this campaign. To everyone who supported the Pink Bun campaign this year, we couldn’t do what we do without you! Thank you to our ambassadors, Megan, Samantha and Nicholas, for sharing their stories this year. You can watch their special message here .
UPCOMING INFORMATION FORUMS:
June – Launceston, Wednesday 22 June July – Port Lincoln, Friday 29 July
For more details visit the BCNA website .
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June 2022 | Issue 91
Breast Cancer Network Australia
HELP REDUCE THE FINANCIAL AND EMOTIONAL BURDEN OF BREAST CANCER. TOGETHER WE CAN CHANGE THIS!
“We were about $20,000 out-of-pocket for the treatment and all the extras.” – LISA
A breast cancer diagnosis should Lisa was 45 when she was diagnosed with breast cancer in 2012. She had prepared herself for all the appointments and treatment, but wasn’t expecting to end up tens of thousands of dollars out of pocket. ‘I had two kids and a mortgage, my income disappeared, the medical bills started mounting up and our savings were devoured. Finances became an all-consuming worry at a time when I was depleted and vulnerable,’ she says. not mean financial hardship and yet, for so many families, it does. Despite conversations about being involved in making decisions about her treatment and care, Lisa didn’t feel she had the right information to make informed decisions about her finances. ‘We were about $20,000 out-of-pocket for the treatment and all the extras.’ Reducing the financial impact of a diagnosis is a key priority for BCNA’s advocacy work. The first year of our Strategic Plan: Towards 2025 focuses on ensuring people like Lisa are less likely to be left with a staggering bill and mounting debt. We also continue to equip people with the information they need when it comes to making informed choices about treatments and whether to go private or public.
Our support includes: • Free, accurate and comprehensive information about the out-of-pocket costs of cancer and what financial support is available • Urging the federal government to increase subsidies for important tests and treatments, provide earlier access to superannuation to help fund treatment and care, and appoint Chronic Illness Liaison Officers within Centrelink to provide specialist financial support. Like so many others, Lisa was unable to work while undergoing treatment. But that didn’t stop the bills from piling up. ‘Even though I had private health cover, the costs kept coming. You still pay an excess for the hospital stays, and gaps for the surgeons and the anaesthetists.’ Lisa is now using her experience to help others. She has joined BCNA’s Financial Impacts Working Group, alongside other women who’ve experienced financial hardship, to help us identify additional ways to reduce the financial burden for people diagnosed with breast cancer. We’d appreciate your support so we can help people focus on their treatment and health, not their next bill, through BCNA’s continued advocacy efforts. For more information and to donate by 30 June, please visit BCNA’s tax appeal website .
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Issue 89 | October 2021
HOW TO BE THERE WHEN YOU DON’T KNOW HOW TO BE A breast cancer diagnosis affects not only the person diagnosed, but also the people around them. The Beacon spoke to two women who have been diagnosed with breast cancer and their supporters to find out what they found helpful and what they didn’t. CINDY AND CHRIS’S STORY ROS AND ANNE’S STORY Two months after the birth of her second son, Ros was diagnosed with metastatic breast cancer at age 38. ‘The first few months were extremely difficult’ says Ros. ‘We had to draw in as much support as possible. For me, that was my husband, my mum and dad and my sister.’ Finances quickly became a concern as Ros could not return to her very successful career.
C indy Scott was first diagnosed with breast cancer in 2016, as a single mum with a young son. In 2020, she was diagnosed again with early breast cancer only six weeks out from her wedding to her now husband Chris. She reflects on her different responses to each diagnosis . ‘The first time I did everything wrong. I didn’t ask for help. I kept going with work because I was self-employed and needed to work. I refused some treatment. I think I was in denial that I even had breast cancer,’ she says. The second time, Cindy had to cancel her wedding two weeks out from the big day, close her business, and begin treatment just as COVID-19 closed international borders. ‘It was an absolute disaster. I’m an executive and leadership coach and know all about mindset. I’m also generally a positive and pretty resilient person, but this was a lot,’ she says . ‘I was a wreck. Eventually my husband said “you need some help”. He rang the Cancer Council and they offered me counselling and it was exactly what I needed.’ Cindy says she learnt to be vulnerable and ask others for help. Receiving messages from people made her feel loved and supported. She also found journaling helpful, eventually turning her entries into a book about healing to help others going through difficult times. While Cindy faced her own challenges, Chris admits he found the pressure of becoming her carer difficult at times. ‘We suddenly went from thinking about marriage to thinking about mortality. I tend to give a lot and initially rejected help for me because it wasn’t about me. But the pendulum sometimes swung too far and I started to run out of capacity,’ he says. It was at these points Chris would take a break, heading out on his bike or going to the gym to burn off some energy. ‘I’d return to my caring role and be revitalised,’ he says. ‘Ultimately, I tried to give Cindy as much love, and take away as much of her care and concerns as possible.’ Chris says it’s important to talk to each other and communicate how you feel and what you need. ‘Carers need to monitor the diagnosed person and vice versa,’ he says. ‘There will be plenty of rough times, but we now look back at it as another speedhump we needed to negotiate. It just adds to life’s tapestry.’
The family moved in with Ros’ parents for just over a year. Her mum, Anne, provided care while Ros’ sister helped to ensure that Ros received the insurance and income protection to which she was entitled. Ros used her entitlements to purchase and renovate a home for her family. Whilst the family makes a team effort, it is Ros and Anne who deal mostly with the issues of the diagnosis. When problems have seemed insurmountable, Ros and her mum sit down together to find solutions. Together they found a support group for women with metastatic breast cancer. This was a positive game- changer for Ros. Together they have had many confronting talks about options presented to Ros by her wonderful and amazing medical team who Ros regards affectionately as her family. Together they have sourced and secured affordable and valued help in the home and for Ros’ overall wellbeing. Together they have entered into the school life of both little boys plus making sure that they are both financially protected in the future. Together they have gardened, solved home maintenance problems, lightened days with a little retail therapy, created bright spots outdoors to sit, reflected and laughed about old times with a cup of tea. Fatigue is a given for Ros’ husband and family team. Anne feels that friends help us all to recharge energies. Anne’s valued friends have listened, often offered sound advice plus practical help when needed. Ros is now in her seventh year of diagnosis all the while dealing with relentless metastases that have involved many surgeries, continuing radiations and chemotherapies. She has shielded her family from medical appointments which she attends on her own. Ros will continue this bravest of fights with enormous tenacity and resilience because her reason for being is her two beloved little boys.
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June 2022 | Issue 91
Breast Cancer Network Australia
Top tips for supporters Professor Jane Turner AM is a psychiatrist and member of BCNA’s Strategic Advisory Group. She shares some of the best ways supporters can help a loved one diagnosed with breast cancer. • Ask what would be helpful to them. • Be a good listener and be responsive. • Google is not your friend. Resist the desire to seek information and rely on your health professionals and trusted sources such as BCNA. • Don’t make assumptions. • Look after yourself so that you too can get through this. This may include exercising, spending some time apart doing the things you enjoy, or talking to a health professional or counsellor. • Ask about changed roles and discuss expectations. Negotiate what is important and what is not, such as domestic tasks. • Set short-term goals and try to have things to look forward to. • Be prepared to share What has worked before in your relationship may be fine – or not. You need to navigate new paths. sadness and grief. If they are upset, don’t tell them not to cry. There are tears to be shed – for both of you. • Let other people help. • Discuss what information they want shared and with whom – they may find it helpful for you to give updates but you need to check how much they want others to know. Read more about how you can support someone diagnosed with breast cancer on My Journey.
Chris and Cindy
Anne and Ros
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Issue 91 | June 2022
ASK THE EXPERT MINDFULNESS
Craig Hassed
M any people describe their breast cancer experience as a rollercoaster, with plenty of ups and downs. It can be a very stressful time and leave you wishing there was a way to take your mind off it all. The Beacon spoke with Professor Craig Hassed OAM, coordinator of mindfulness at Monash University, about how practising mindfulness may help. WHAT IS MINDFULNESS? Mindfulness is a form of meditation and a way of living where you practise developing awareness and being more present in your day-to-day life. It includes practising simple and effective techniques that work so you are less caught up in your mind. This in turn reduces anxiety, stress and depression. Mindfulness can also be about attitude. By practising acceptance, self-compassion and cultivating kindness, you can reduce self-criticism, self-judgement and negativity. WHAT ARE THE DIFFERENT WAYS PEOPLE CAN PRACTICE MINDFULNESS? There are two main types of mindfulness: • The formal practice of mindfulness meditation, which generally involves sitting still and being mindful • The informal practise of learning to be more consciously attentive and live more in the present moment. HOW DOES MINDFULNESS ENHANCE WELLBEING? Much stress is internally generated through worry and rumination about the past and future. Mindfulness helps to remove stress from the mind and body and reduce anxiety and depression. It can also help you to function better in day-to-day life by improving your memory and decision-making ability. It also helps you to savour life and enjoy more of life’s simple pleasures. HOW COULD MINDFULNESS HELP PEOPLE WHO HAVE BEEN DIAGNOSED WITH BREAST CANCER? Mindfulness can be a very useful support alongside your medical treatment. It can help you cope better
with adversity, reduce suffering from chronic pain, and help with managing common treatment-related concerns such as nausea and fatigue. A breast cancer diagnosis brings with it plenty of very real concerns, but mindfulness can help you differentiate helpful and unhelpful thoughts. When we’re not mindful, we’re fighting with phantoms of our imagination, worrying about many problems that are not even there. We are also less able to focus on the things we can control in the present moment. Planning and preparing for the future is helpful. Worrying about it what may happen is not. You can plan for the future and learn from the past while still being mindful. Mindfulness reminds us the future is always uncertain. We only ever have the present moment to live fully and with intention. HOW WOULD YOU ENCOURAGE PEOPLE TO GET INTO MINDFULNESS? Some ways you can learn to be more mindful include: • Finding out if there are any mindfulness programs available where you are having your treatment • Seeking out guidance and support from a trained psychologist, doctor or mindfulness teacher • Using an app, book or website to support your ongoing practice. Monash University offers an excellent free online course: Mindfulness for wellbeing and peak performance , which provides you with a good foundation. My book, Mindfulness for Life, includes sections on cancer, stress and pain. Some of the most effective techniques for practising mindfulness are: • Focus on your breath • Connect with your five senses • Practise gratitude by writing down the things you are thankful for • Spend time savouring the moment or connecting with nature. Like any skill, mindfulness takes practise and becomes easier the more you do it.
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June 2022 | Issue 91
Breast Cancer Network Australia
COVER STORY
Iris Bar and her daughter
MASTERING MY MIND THROUGH MINDFULNESS Iris Bar shares her story of how mindfulness and meditation helped her cope with metastatic breast cancer and inspired her to become a mindfulness and meditation teacher to help others turn this ancient art into a modern-day practice. I was diagnosed with stage 4 breast cancer six years ago. Cancer had spread to my bones, spine and liver. I was so sick I could barely walk. My daughter’s kinder was across the road from our house, and I couldn’t even take her there. I felt terrified, but something in me knew that besides going through long rounds of chemotherapy and radiation, there were other ways I could enhance and support my healing and recovery. I believed the way I related to my diagnosis, my relationship with all that was happening, and the narratives I was creating in my mind all played a major role in my ability to respond to this crisis. Rather than just “giving myself” to the doctors for them to “fix” me, I wanted to participate actively as a patient. I knew I needed to find ways to shift my fearful thinking without suppressing my feelings and to use my mind as an ally to overcome the many hurdles I faced. So I began to meditate and practice mindfulness daily. I started by consciously slowing down, pausing, and noticing in the present moment what was going on with me. I discovered how much self-judgement and criticism I had which would not support my healing. I consider myself a kind person, but I wasn’t being kind to myself. I was feeding fear-based thinking. I learnt to pay attention to my thoughts and feelings with kindness and compassion. Mindfulness is not about stopping thinking. That’s like asking our heart to stop beating. Instead it helps us distinguish when thoughts serve us and when they don’t. It’s about knowing when to see the mind is our servant and when it is our master.
Over time, I could ease my racing mind and regulate my intense feelings and emotions. I regained a sense of empowerment. This significantly changed how I coped and even flourished while living with cancer. I felt I had turned my crisis into an opportunity for growth and began living a more aware, joyful and satisfying life. That’s not to say it wasn’t also sometimes hard, challenging and frightening. I have now been practising mindfulness and meditation consistently for six years. I feel there is much more space to how I respond to life, and particularly to the things that challenge or irritate me. I’m a better mum, friend and partner because of it, and I now see myself not as a cancer survivor but a cancer thriver. To read more about Iris’s story, visit www.irisbar.com.au/my-story .
FIND OUT MORE ABOUT MINDFULNESS VIA MY JOURNEY
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Issue 91 | June 2022
The wellbeing wonder drug EXERCISE
Dale Ischia
E xercising is so beneficial, yet for many of us it is hard to find the motivation to get started and keep going. It’s natural to feel unsure about exercising during and after breast cancer surgery and treatment, especially as you may be healing or managing side effects such as lymphoedema, muscle or joint pain, peripheral neuropathy or fatigue. To inspire you to get moving, The Beacon asked Dale Ischia for some advice. Dale is an accredited exercise physiologist and owner of Moving Beyond Cancer in Melbourne. She supports people to move their bodies (and mood) after a cancer diagnosis. ‘Exercise really is a magic pill that offers so many benefits,’ says Dale. ‘It counteracts many of the side effects of medication and treatment, such as cancer- related fatigue, chemo brain, lower bone density, depression and anxiety. It also helps to improve your mood, muscle mass, heart and lung function, balance, mobility, bone density, sleep, immunity and, importantly, reduces the risk of breast cancer recurrence (coming back).’ Dale has responded to some of the common questions people have about exercising during and after breast cancer treatment. I was active before breast cancer but now I can’t do some of the things I once enjoyed. Will I ever get back to my former, fitter self? It will take time and consistency to get back to your former level of fitness, but it is possible to restore your cardiovascular fitness and strength with a variety of different types of exercises. I feel like I have no energy. Won’t exercising just make me even more tired? Exercise actually reduces fatigue. It is also an effective way to support and improve mental health. During a time when so much feels out of your control, exercise can give you a sense of empowerment and reassurance about what your body is capable of.
I wasn’t particularly active before my diagnosis but would like to be now. Where do I begin? Doing any physical activity is better than doing none. If you do little or no physical activity right now, start by doing some, then slowly build up so you are active on most days. I am worried about injuring myself. What can I do to make sure I exercise safely? Find a form of exercise that suits your situation and start slowly before gradually increasing movement and frequency. Talk to your treating team about types of exercises you can do and consider seeing an accredited exercise physiologist for an individualised program that specifically address your concerns. You can find an accredited exercise physiologist near you by visiting the Exercise and Sports Science Australia website . Top tips for moving more 1. Do what you enjoy 2. Exercise with a friend 3. Include exercise in your diary, just like any other appointment 4. Choose the time of day when you generally have more energy 5. Add variety – cardio, strength training and mobility/balance exercises 6. Consider online programs or ask an exercise physiologist for a program you can do at home. BCNA’s resources about exercise • BCNA’s My Journey • Upfront about Breast Cancer podcast – Exercise and breast cancer • What you don’t know until you do, with Dr Charlotte Tottman podcast – Exercise is annoying (cos it works!)
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Breast Cancer Network Australia
June 2022 | Issue 91
BUSTING NUTRITION MYTHS
Lauren Atkins
T he foods you eat have the power to make you feel good and support your recovery and healing. The Beacon asked Lauren Atkins, an Advanced Accredited Practising Dietitian and co-founder of OnCore Nutrition, to bust some common myths about food and breast cancer. What impact does nutrition have before and after a breast cancer diagnosis? Nutrition can significantly impact the cancer experience and outcomes. Research suggests that as many as 30 to 35 per cent of cancer-related deaths are linked to diet. Good nutrition can support better treatment tolerance and reduce side effects. It can also help develop strength and muscle mass, stabilise energy levels and mood, and reduce the risk of cancer recurrence. Finding a good balance is key to ensuring you are getting the best nutrition for your body without feeling deprived or fearful about food.
diagnosis is eligible to access a Chronic Disease Management Plan and Medicare subsidy. You need to have your GP develop a plan for you before your appointment to be eligible for a Medicare subsidy. MYTH BUSTING Does sugar cause breast cancer? Are artificial sweeteners a better option? Cancer feeds off everything, including sugar. However, sugar also fuels our healthy cells. My advice is to include sugar in moderation as part of a balanced diet. Should I try a keto or low carbohydrate diet? There is some evidence linking low carbohydrate and ketogenic diets with reduced risk of breast cancer recurrence. I recommend moderate intake of low glycaemic index (GI) carbohydrates – these are complex carbohydrates that are broken down and absorbed more slowly into our bloodstream. Whole grains, legumes, nuts, seeds and some vegetables and fruits are examples of low GI carbohydrates. They provide a steady release of energy and don’t cause blood sugar and insulin spikes. Seek support from an APD before making any significant changes to your diet. Is organic food better for me?
inconclusive but the evidence supporting eating plenty of fresh produce is not! Ideally, focus on eating plenty of fresh, plant-based produce, organic or not. Should I avoid dairy? According to our best available evidence, including the latest World Cancer Research Fund recommendations, dairy products and diets high in calcium appear to reduce the risk of breast cancer recurrence. Continue to enjoy dairy products to support bone health and opt for calcium fortified alternatives if you choose to be dairy-free. For those on aromatase inhibitors, such as anastrozole and letrozole, it’s important to protect your bone health and get the recommended intake of calcium and vitamin D. Do I need to give up chicken because of the hormones? No. Lean poultry has been shown to be protective in the context of breast cancer. No chicken produced in Australia contain added hormones. Is soy bad for you? There is no reason to avoid soy products and in fact some argument to include them. The only exception here is soy supplements, which should be avoided. For more information, check out BCNA’s My Journey or listen to Upfront about breast cancer podcasts: Busting nutrition myths and Nutrition and breast cancer .
Who can I see for nutritional advice?
An Accredited Practising Dietitian (ADP) with oncology experience can provide tailored nutrition advice. To find an ADP, visit the Dietitians Australia website . Anyone with a breast cancer
Evidence about the impact of organic foods on cancer is
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Issue 91 | June 2022
Sex and intimacy AFTER BREAST CANCER
Janine Porter-Steele
B ody image changes, loss of libido and the side effects of menopause are just some of the issues that can affect your sexual wellbeing after a breast cancer diagnosis. Janine Porter-Steele, Clinical Nurse Manager at Wesley Hospital Choices Cancer Support Centre in Brisbane, shares some ways you can support your sexual wellbeing. Janine’s background is in cancer care nursing and she has a particular interest in the impact of cancer on sexual wellbeing. What are the common side effects of breast cancer treatments that may impact sexual health? Chemotherapy and hormone- blocking therapies can cause or increase menopausal symptoms. Menopause can reduce your libido, cause vaginal dryness and make intercourse painful. Men undergoing hormone-blocking therapy can experience changes in libido or erectile dysfunction. The most important thing to remember is that you are not alone. The side effects you are experiencing are very personal but unlikely to be unique. How can these side effects impact your wellbeing? These changes, along with any surgery you may have, can be very confronting. You may look and feel different. So it’s natural that your body image may be affected. Body image issues, sexuality and emotional intimacy are all inter-connected.
Can these side effects affect your relationship with your partner? Yes. Many people say they don’t even want to think about sex until after they’ve finished treatment. They go into treatment with oestrogen in their bodies but come out the other side with reduced levels, which puts them into menopause. At the same time, their partner may be worried about hurting them or pressuring them for intercourse but instead come across as disinterested. Communicating with your partner is key. Let them know how you feel. You can have sex without intimacy and intimacy without sex. Sometimes it’s just about touch and connection. What are some tips to help improve intimate relations? You might find it helpful to: • Talk about your concerns with a health professional such as your GP or breast care nurse. Remember, they may not raise it unless you do. • If vaginal dryness is a concern, ask your medical oncologist if an oestrogen-based cream is appropriate for you to use to overcome pain during intercourse. • Try using a vaginal moisturiser or lubricant, or both, to manage vaginal dryness. • Recognise that your libido changes over time. Sometimes sexual desire can develop after you start being intimate
with your partner, rather than before. • Relaxation is important – take things slowly and gently. • Start with simple strategies and don’t give up too easily – if the first attempt doesn’t work, try again or try something different. • Practise self-exploration – get to know your body again. If you don’t know what works for you, neither will your partner. Who can I speak to if I have concerns? Find someone you feel comfortable with. It may be someone in your treatment team or your GP, your breast care nurse or an allied health professional, such as a women’s health physiotherapist or a sex therapist. If you don’t feel comfortable talking to one health professional, try another until you find the support you need. BCNA’s sexual wellbeing resources Hear more from Janine in BCNA’s Sexual health and wellbeing virtual conference . Read articles and find relevant resources on My Journey .
Listen to podcasts on Upfront about Breast
Cancer and What you don’t know until you do with Dr Charlotte Tottman.
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June 2022 | Issue 91
Breast Cancer Network Australia
THE POWER OF A CONVERSATION
B CNA recently launched new In faced and advice they have for others. Shananne and Kate feature in the Under 40 and experiencing breast cancer episode. Kate was Conversation podcast episodes, in which two people have a candid conversation about their breast cancer journey, the challenges they
diagnosed with triple negative early breast cancer when she was 26 years old and 28 weeks pregnant. Shananne was diagnosed with hormone receptor positive early breast cancer in 2018 when she was 37 years old and pregnant with her third child. They wrote to each other after recording the podcast episode to share how the conversation helped them, and how it may help others.
Hi Shan! It’s so lovely that you have reached out to me after our discussion on the podcast episode. Even though the circumstances of us meeting were not ideal, it was great to connect with someone who has been through a similar experience to myself. Our conversation helped
To Kate, It was so lovely to chat and hear about your breast cancer journey. Trying to heal yourself mentally and physically alongside becoming a new mother has so many unique challenges and your resilience and strength shine through when you share your experience.
Shananne
Kate
me feel comfortable discussing life after a breast cancer diagnosis, especially our discussion around ‘sticking up for yourself’ and pushing for another opinion when things just don’t feel quite right. Being diagnosed with breast cancer is an awful time in anyone’s life, so knowing there are others out there who are willing to share their experience and tips on life after a breast cancer diagnosis is comforting. I thought I’d hate hearing my voice on the podcast (doesn’t everyone?) but as soon as we started recording, I felt that our conversation was so important for other people who are navigating a cancer diagnosis to hear and I do hope that we have encouraged many others to reach out for support – whether that be professional support or simply chatting with a friend about what they are going through. Speak soon, Kate
I love that you have found yoga to help support your mind, body and spirit. After our conversation I did an online class and really found it a great way to feel calm and centred again. Thank you for sharing, as it was something I had not done before. Hearing your experience encouraged and reminded me to always believe in myself, trust my instincts and learn to advocate for myself. I hope as you continue your healing you keep on sharing your journey with others. You are such a strong, inspiring mother, and your story will help others as they navigate a breast cancer diagnosis. Kindest, Shan
For more information or to listen to Upfront about Breast Cancer In Conversation episodes, visit the BCNA website . For more information and resources for young women and breast cancer, visit My Journey .
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Issue 91 | June 2022
MEMBER STORY
A letter to me Rhea Felton was 34 years old when she was diagnosed with breast cancer. After her treatment ended, she wrote a letter to herself to capture her experience and reflect on how she’d changed when she came out the other side.
Being diagnosed with breast cancer at 34 years rattled you to the core. You held your daughters tightly in your arms, not knowing all the answers. Your husband would wake up at 3am to find you on the computer researching cancer treatment. Night and night again, wiping away tears of fear. Your daughter would notice you crying while cooking dinner and ask why your heart was sad. You would walk into Coles to buy milk but instead blankly gaze at the flour thinking about your upcoming surgery and forgetting why you came to the shops in the first place. To the woman on the left, your name was the one on the pathology report but all you could focus on was the wellbeing of your family. You felt an overwhelming sense of need to make sure they were supported through this moment in their story. And still do. The thought of being away for seven nights from your family sparked a huge amount of separation anxiety, which is still somewhat present. You felt the most isolated you have ever felt in your entire life. This photo is of you smiling one day after your mastectomy to reassure your girls their mum was ok. The physical pain was overwhelming, but you wanted your girls to feel comfort. Your three-year-old daughter cried while hugging you because she wanted to stay with you in hospital overnight and help you heal. You reflect that she is like you. Your husband tells you that your one-year-old daughter was walking into every room at home looking for mum, because mum was always there. But not now. This was hard. To the woman on the left, I see you for all of your fragilities and salute you for being you. In the deepest moments of your life, you were vulnerable, and brave and afraid. You are worthy. You are the strongest woman I know.
To the woman on the left, I see you.
I know you felt your quota of life-altering change was done when you lost your father to suicide at 16 years old, not knowing what was to unfold in the years ahead. You have felt fragile at many points in your life. Fragile, but not defeated. A sense of wonder and curiosity flow through your veins. Your 16-year-old way of questioning everything primed you well for your life ahead.
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To the woman on the right, You are not one for marking moments on a calendar because gratitude occurs every day. But in the cancer world, anniversaries seem to be important. Post-surgery recovery was more intense than you had ever imagined. But you were at home with your family and you knew that your recovery could now begin. Your body urgently needed you to be slow to heal. This was harder than you thought it would be. You felt uncomfortable accepting help. But you needed to. Your family needed you to. And you did. Your mum travelled from Queensland to live with you for six weeks supporting you, your husband and your girls. She is brave. You are like her. You look at yourself in the mirror and notice how differently your body appears following surgery. Some days this still makes you sad. Your body has formed so much of your identity. And you can’t stop thinking how dare something take this away from you. You know your husband loves you so much deeper than the physical being but you still doubt yourself of being worthy of love. To the woman on the right, you have a new relationship with your body and one you are still trying to work out. You felt self-conscious and wore scarves constantly to cover up the asymmetry for months after the surgery. Your response to these feelings was ok. And still is. Your daughter has, on numerous occasions, put a Band-Aid on her breast and told you she is going to help women remove their breast cancer when she is older. To the woman on the right, you can’t stop thinking about your children and how they experienced your breast cancer diagnosis and care journey. You think about your cancer treatment and feel the absence of conversation about how children experience a family cancer diagnosis and treatment. This conversation is needed. It was important to you knowing your children felt included in your family’s story. This was their story too. You hold your girls tightly, still not knowing all of the
answers. But you now know this is ok. Recurrence thoughts float in and out of your mind often, and you are still finding a way to manage them. You have more wonder and curiosity now than ever before. Never lose this. To the woman on the right, your body did not fail you. It urgently needed adjustments and you listened. To the woman on the right, the woman on the left enabled you to get here. She is brave and vulnerable and worthy. Love, me
Want to share your experience in The Beacon ? Email contact@bcna.org.au with a short summary of your story.
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BCNA THINK TANK: A SYMPHONY OF VOICES
I n March, the BCNA Policy and Advocacy team hosted a two-day Think Tank event in Melbourne, bringing together 21 consumers with a lived experience of breast cancer from across Australia. The Think Tank provided an opportunity for consumers to come together to help drive the implementation of BCNA’s Policy and Advocacy Strategy as well as sharing experiences and insights as to new ways in which BCNA can work with consumers more effectively. It was an opportunity to hear lived experiences because, as one of the participants so eloquently said, ‘a voice of one is a song for many’. The first day focused on the individual voices of consumers who shared their breast cancer stories and the issues that matter to them. Their lived experiences represented a metastatic breast cancer diagnosis, Aboriginal and/or Torres Strait Islander, LGBTIQ+ and living in a regional/remote area. This was followed by a discussion about how the lived experience informed the four key focus areas of BCNA’s Policy and Advocacy Strategy: • Year 1 – reducing the cost of breast cancer for those diagnosed • Year 2 – improving equity of access to optimal breast cancer care • Year 3 – improving the experience of living well with and beyond breast cancer • Across the three years – improving outcomes through reducing risk of developing breast cancer and early detection activity.
The conversation looked at how these areas were chosen and the actions, progress and impact of the strategy so far. Day two focused on improving and enhancing BCNA’s consumer engagement mechanisms. This included hearing from a BCNA consumer perspective on what it truly means to be a consumer-led organisation and the path ahead for BCNA. CEO Kirsten Pilatti presented a leadership perspective on BCNA’s origins, its successes and the organisation’s direction. An overview of the key consumer groups driving BCNA’s advocacy work highlighted BCNA’s continued commitment to being consumer driven. These existing groups include BCNA’s Review & Survey Group, the Seat at the Table Program, and the recent establishment of Lived Experience Reference Groups. The Think Tank brainstormed what future consumer engagement might look like and how these
The event ended in a crescendo of voices as a BCNA Consumer Representative reflected upon the Think Tank and consumers were encouraged to speak up and ask questions. The task at hand is now to turn all of the thoughts, ideas, and recommendations into a reality that strengthens how BCNA represents all of those in our network. Thanks to all the consumers who participated in the Think T ank event and for sharing their lived experience.
various mechanisms might interact and inform BCNA’s direction as an organization.
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Breast Cancer Network Australia
Workplace Giving Programs are an easy way to bring workplaces together for a common cause. Louise Sinclair found this to be true when she chose to support BCNA through her employer’s Workplace Giving Program. She also generously donates her time as a BCNA Consumer Representative. Like some other companies, Louise’s employer, legal information and technology service provider Thomson Reuters matches employees’ donations (see, for example, the Double the Donation platform ). However, Thomson Reuters’ Workplace Giving Program goes a step further by recognising the invaluable contribution volunteers make. Thomson Reuters supports its employees to access paid volunteer time of 16 hours per year for an eligible organisation. Louise accessed this so she could attend BCNA’s Consumer Representative Think Tank earlier in the year (read more on page 16). Once employees reach a minimum of 20 volunteer hours (including the 16 hours of paid volunteer time) they can request a Volunteer Grant from Thomson Reuters of US$500 to be donated to their eligible organisation. This thoughtful addition to the standard Workplace Giving Program creates a wonderful cycle of the more you give, the more you give! THE GIFT OF TIME: A NEW TAKE ON WORKPLACE GIVING
We’d love to see other organisations setting up a similar program. This June, BCNA’s Workplace Giving campaign focuses on how BCNA supports Australians to have the difficult conversations in the workplace that come along with a breast cancer diagnosis. Find out how BCNA is helping and more about Workplace Giving by visiting the BCNA website . GIFTS IN WILLS ANNE’S GIFT TO HELP MAKE A DIFFERENCE!
Louise Sinclair
Anne Fletcher is an inspiring woman who spent 65 years working as a nurse, caring for the health of others across Australia and around the world. During her incredible career, Anne became aware of the impacts of breast cancer, and dedicated herself to support those requiring support, treatment and care. Continuing her desire to help people affected by breast cancer, Anne has now decided to leave a gift to BCNA in her Will to make a difference and to lessen the burden for others. ‘I have been fortunate enough to observe the incredible support BCNA provides to all Australians diagnosed with breast cancer over BCNA’s history since inception, 24 years ago. Therefore, I made the very simple decision to leave a gift in my Will to ensure their great work for all Australians continues well into the future,’ she says. Thank you, Anne, for choosing to help BCNA continue to support the increasing number of Australians affected by breast cancer. We know making or updating a Will can be costly. BCNA has partnered with Gathered Here, Australia’s top-rated free online Wills platform. BCNA supporters can create a FREE, legally binding Will in less than 15 minutes, with unlimited updates for life. Find out more . Alternately, to learn more about leaving a gift to BCNA in your Will, please contact BCNA’s National Manager Major Gifts Gerrard Peck on mobile 0402 124 624 or email gpeck@bcna.org.au .
Anne Fletcher
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Issue 91 | June 2022
In May, sporting organisations across the country got involved to PLAY4BCNA, host a Pink Sports Day and show support for Australians affected by breast cancer. Here are just a few of the highlights from over 300 events and more than 1000 clubs that participated. THANK YOU! TOP FUNDRAISERS THIS MAY PINK SPORTS DAY
Avondale Football Club – 2nd Annual Pink Sports Day and luncheon raised $31,000
Ocean Grove Football Netball Club – 8th Annual BCNA Pink Day and Ladies function raised $21,720
Melbourne Vixens PLAY4BCNA round
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Breast Cancer Network Australia
NATIONAL NBL1 PLAY4BCNA Round – Basketball
DeLaSalle FC – VAFA PLAY4BCNA Round
Geelong Harness Racing Club ‘Pink Lady’ Dinner and race night
Hawthorn Hockey club
To view hundreds more Pink Sports Day photos, search our hashtags #PLAY4BCNA and #PinkSportsDay on instagram.
Annual Hockey Victoria Breakfast and PLAY4BCNA Women’s round
Blackburn FC - EFNL PLAY4BCNA Round
Wenona School - IGSA Pink Sports Day
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Issue 91 | June 2022
AROUND THE Network
SHAVING FOR A CAUSE
In April, Peta Dunlop and her dad Trevor shaved their heads (and his beard) to support Australians affected by breast cancer, having known six women who have been diagnosed with the disease. Thanks to the incredible support of the Mooroopna (VIC) community, Peta and Trevor successfully raised $6,118.50 for BCNA . To find out how you can support BCNA through your own personal challenge, please contact us on 1800 500 258 or visit the BCNA website .
From 22 to 24 April, a team of 27 cyclists cycled 400km in three days through WA’s Margaret River Region to Alliance Airlines’ Perth Airport hangar, raising over $150,000 for BCNA . A massive thank you to the Alliance Airlines team, their sponsors and event organisers Entoure as well as our local ‘ BCNA H2H Support Crew’ who came down to cheer on the team. We couldn’t have done it without you! HANGAR2HANGAR 3.0
BERLEI PROVIDES FREE KITS TO SUPPORT AUSTRALIAN WOMEN Since 2005, Berlei has been a proud partner of BCNA and is committed to developing pioneering products that offer comfort and support those affected by breast cancer. As part of this commitment, BCNA and Berlei can provide you with a free kit to help support you in the first 12 weeks after surgery. Called the My Care Kit , it contains a Berlei bra that’s been especially designed to be worn in the immediate recovery period and can also be worn during radiation treatment, soft form/s, and essential information to help you navigate this challenging period in time. Over 180,000 kits have been distributed since this program began, and you can order yours through your health professional or by contacting BCNA’s helpline 1800 500 258 .
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