ISSN 1834-5921










Letter from the CEO


Breast Cancer Awareness Month



W elcome to the help you to feel more confident to make decisions about your breast cancer treatment and care and to ask for any help you need. We know that being diagnosed with breast cancer and going through treatment can be extremely difficult, however by having access to the right information and knowing the options available to you, you may feel more in control. Firstly, I would like to acknowledge the death of Olivia Newton-John last month. We know it was a hard day for many of our network September edition of The Beacon where we hope our stories will and we hope you all found the support you needed. She will be remembered for her dedication and incredible advocacy in awareness and improving cancer care through the Olivia Newton-John Cancer Wellness and Research Centre, while also being an inspiration to so many, especially those with metastatic disease. In this edition, we hear from some of our members including Patti, who was diagnosed a second time with early breast cancer last year and shares how her experience was different this time around. We speak to Medical Oncologist Professor Bogda Koczwara and BCNA Consumer Representative Naveena Nekkalapudi about managing long-term side effects of treatment, a follow-up to our very popular webcast in May, which is available to view now via our website . Additionally, we explore health insurance and what your rights are if you’ve received a breast cancer diagnosis. In June, we hosted the Pink Lady Match at the Melbourne Cricket Ground (MCG) with the support of our partners, Melbourne Football Club and Red Energy. Our Mini-Field

Trialling a new treatment for triple negative breast cancer The life-changing impact of Herceptin Ask the Expert: Managing long-term side effects of breast cancer treatment Raising awareness that men get breast cancer too Empowered the second time around Breakthroughs in breast cancer research Knowing your rights when it comes to health insurance Making progress with our policy and advocacy work Re-connecting with our community

of Women site outside the ground enabled people to visit and silently acknowledge or leave a tribute in support, celebration or memory of someone affected by breast cancer. Some of our BCNA members formed a guard of honour as the Melbourne players ran through the banner onto the field, while those sitting in the Pink Lady Bay cheered them on. It was fantastic to see the show of support in the crowd and via our virtual Pink Lady for those at home. The significance of the match was acknowledged with Melbourne landmarks and the MCG turning pink in support of BCNA for the evening. We’re looking forward to being able to stand on the ‘G next year for our sixth iconic Field of Women event, and we invite you to register your interest in attending on page 21. October is Breast Cancer Awareness Month and, during this time, we will focus on optimal breast cancer care and what this means for you. No matter where you live in Australia, how you identify or at what stage of treatment you may be, you deserve equal access to the best care. There are many important dates during October, including Metastatic Breast Cancer Awareness Day on 13 October and Male Breast Cancer Awareness Day on 20 October. In this Beacon , we share the stories of Jenny and June who are living well with metastatic breast cancer, and Harry, who also lives with metastatic breast cancer and features in our new podcast Raising awareness for men with breast cancer . The Pink Tradie campaign is on now and it’s not too late to get involved. We are calling on all tradies to wear pink, by pulling on a Pink Tradie beanie or a pair of BCNA pink socks. Businesses and individuals can register to fundraise and host a BBQ or

Work after breast cancer: Tackling the difficult conversations



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





Kirsten Pilatti with Hugh Greenwood at the Pink Lady Match


Managing side effects of hormone blocking treatment with Dr Michelle White

morning tea and start a supportive conversation about breast cancer in the workplace. Read more about the campaign and the Pink Tradie photo competition on page 23. We are also thrilled to announce that the Carman’s Fun Run will be back in Melbourne in February 2023! Keep an eye out for more details so you can add the date to your diary. Clinical trials are pivotal for major treatment advances, and we were pleased to hear about the breakthroughs from the 2022 American Society of Clinical Oncology (ASCO) Annual Meeting. On page 12 and 13 we share some of the key successful studies. Thank you as always for your support. We hope this issue leaves you with the confidence to speak up and ensure you get the treatment and care you need and deserve through every stage of your breast cancer experience and beyond.



FACTSHEET Managing the financial impacts of breast cancer


Around the Network

20 Pink Lady Match 21 Field of Women 2023 22 Upcoming fundraising activities 23 Pink Tradie is back!

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

Editor: Amelia Cox Designer: Justin Dymott

Contributors: Jeanie Watson, Lisa Berger and Naveena Nekkalapudi

INFORMATION FORUMS Ballarat on-demand presentations Launceston on-demand presentations

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


Kirsten Pilatti Chief Executive Officer



September 2022 | Issue 92

Breast Cancer Network Australia

Issue 92 | September 2022

KEY DATES FOR YOUR DIARY! ALL MONTH – PINK LADY EVENTS Support BCNA by holding a Pink Lady fundraising event, whether it’s a high tea or movie night. Include a Mini-Field of Women tribute (indoor

On page 6 and 7 you’ll hear from Jenny and June who both share their experiences of living with metastatic breast cancer and how they are hopeful for the future. We’ve recently launched two new digital resources, Just diagnosed with metastatic breast cancer, what’s next? webcast and In conversation with Kala and Emily: Living with metastatic breast cancer and continue to update My Journey with helpful articles and resources to ensure you have the most up-to-date information to make informed decisions about your treatment, care and beyond. 19 OCTOBER – BREAST RECONSTRUCTION AWARENESS DAY Today we raise awareness of the importance of access to information and options available about breast reconstruction for people facing mastectomy due to breast cancer. It’s also about ensuring this information is available at the right time and explores the option to stay flat. Sign up and read articles about breast reconstruction on My Journey or watch the Breast reconstruction – Options and expectations Virtual Conference or read the Breast Reconstruction in Australia 2021 Report . 20 OCTOBER – MALE BREAST diagnosed with breast cancer in Australia and it’s important that men have access to information and resources to ensure they are not isolated by this diagnosis. On this day, we’ll be hosting a Zoom event for men diagnosed with breast cancer. On page 10 you’ll hear more about the event, discover the information and resources available for men and meet BCNA member Harry who shares why he wants to spread awareness about men and breast cancer. CANCER AWARENESS DAY This year, 212 men will be

and outdoor kits available) as a show of support for the people in your local community affected by breast cancer. For more details, visit the BCNA website . ALL MONTH – BERLEI AND SUSSAN Through October, our wonderful major partners Berlei and Sussan are running two very special campaigns to support BCNA. Berlei’s Pink Bra Project will again donate $10 from the sale of every product in their new Pink Bra collection. Sussan will also donate $10 from their new season pink t-shirt and $20 from every pair of specially marked pink pyjamas sold to help raise awareness of BCNA and the support we provide Australians affected by breast cancer. You can find these fabulous items instore and online at and . 10 OCTOBER – MENTAL HEALTH DAY Take a moment today to check in on yourself and those around you. A breast cancer diagnosis can take a toll on your mental health, and that of your family and friends. If you or anyone you know needs support, please contact BCNA’s Helpline on 1800 500 258 or . 13 OCTOBER – METASTATIC BREAST CANCER AWARENESS DAY BCNA will continue to advocate and be a voice for those diagnosed with metastatic breast cancer today and every day. We acknowledge the hardship and distress of a metastatic diagnosis but it’s important to know that with current advances in treatment, people are living longer with a better quality of life.


Wendy Dean (third from left) surrounded by her loved ones

O ctober is Breast Cancer Awareness Month and it’s a time for BCNA to highlight why it’s so important that those affected by the disease receive the very best care, treatment and support. This year BCNA will aim to raise awareness of optimal breast cancer care.

This is what we call optimal care. As part of this work, BCNA will seek to raise awareness of the Optimal Care Pathways (OCPs) amongst our entire network, including those diagnosed as well as health professionals providing treatment and care to those with breast cancer. The Breast Cancer OCP describes the standard of care that should be available to you and is an important tool for you to have conversations with your treating team about what optimal care looks like for you.

As an Australian with breast cancer, you deserve to receive the best care, irrespective of who you are, where you live or your stage of diagnosis. You should have access to a healthcare system that works well for you and your treating team. Your care should be patient centred, integrated, timely and multidisciplinary. It should include both specialist and supportive care during and after treatment and you should be informed of any suitable clinical trials.

Berlei post surgery bra



September 2022 | Issue 92

Breast Cancer Network Australia

Issue 92 | September 2022




As of October 2021, trastuzumab (Herceptin®) is no longer available as a subsidised medicine on the Pharmaceutical Benefits Scheme (PBS). Several equivalent brands of trastuzumab are subsidised through the PBS and will remain available to people undergoing treatment for HER2-positive breast cancer instead of Herceptin. You can read more here .

June with husband David in North America

T  hursday 13 October is Metastatic Breast Every day, BCNA works to give people living with metastatic breast cancer a voice to encourage change and provide them with the support and information they need to feel empowered and live well. Cancer Awareness Day and we acknowledge those living with metastatic disease. clinical trials, people diagnosed with metastatic breast cancer are more likely to live longer and have a better quality of life than ever before. To read more about recent clinical trials, go to pages 12 and 13. If you’re having treatment for metastatic breast cancer and would like to be involved in a clinical trial, consider asking your treating team if there’s a trial you’re eligible for. The Beacon spoke to June and Jenny who are both living with metastatic breast cancer. They share their experiences of being diagnosed, treatment decisions, challenges and how cancer has changed their outlook. Trialling a new treatment for triple negative breast cancer I wanted to share my story of metastatic triple negative breast cancer (TNBC) and the astounding results I’ve had from a new drug, Thanks to advancements in treatment and the success of Trodelvy. After five months of treatment, my tumours have become mostly inactive, and I am now enjoying a long-awaited

I t’s been 10 years since I cancer diagnosis. After the initial shock, I chose to apply the same attitude I’ve had since my original diagnosis of early breast cancer in 2001 - the minute I found out I had breast cancer I said to myself, this is not going to rule my life. I won’t be defined by it. was told breast cancer had spread to my liver. It was the third time I’d received an unexpected breast This approach has helped me manage years of treatment, including a lumpectomy, chemotherapy, radiotherapy and ongoing hormone-blocking therapy. When I was diagnosed with another primary breast cancer in 2006, I had an axillary clearance (removal of lymph nodes) and Herceptin was recommended as part of my treatment. Herceptin, a targeted treatment for women with HER2- positive breast cancer, had only recently been added to the Pharmaceutical Benefits Scheme (PBS), thanks to BCNA’s advocacy to make the life-saving treatment more affordable. Herceptin had been an incredibly expensive treatment, costing thousands of dollars, but by the time I was put on it for three months to treat my early breast cancer, I didn’t have to pay for it. That made a huge difference and took away some of the additional financial stress. Herceptin has since played an even greater role in my life. When I was diagnosed with

of heart problems, so each year I have an echocardiogram (ECG) to monitor any side effects. Ultimately, I am hopeful about the future of women with metastatic disease. Early detection and improved, more targeted treatments have made a huge difference. The longer you live, the longer you can expect to live.

it in Australia, and I was fortunate enough to meet the criteria. When I was first started on Trodelvy there wasn’t a lot of information about what to expect. There weren’t many people in Australia on it and we were all learning on the go. I found a blog which helped me understand more about what I could expect. The side effects aren’t great. I lost all my hair after the first cycle, and also experienced significant fatigue at the beginning and some nausea, though these have reduced over time. The treatment has definitely slowed me down but it hasn’t stopped me. One of the things that shocked me was the number of women on the Australian breast cancer blogs who wanted to get access to Trodelvy but either couldn’t afford it or it just wasn’t available where they lived. My heart breaks for them. Thankfully, it is now on the PBS so more people can access it. I feel very lucky to be able to access this treatment and that my body’s responded so well. It gives me a lot of hope for myself and others to continue to be active and lead fulfilling lives. We are so lucky cancer researchers, medical professionals, BCNA and other organisations, along with the health system, are constantly innovating treatment and tools that improve our quality of life.

metastatic breast cancer in 2012, my oncologist recommended Herceptin every three weeks as part of my treatment, and it’s been life-changing. My cancer is currently considered to be in remission. These days I only have Herceptin every six weeks, which has made a world of difference. I’m extremely grateful for my team and their care over the years. Throughout everything, I have focused on leading a normal life and pursuing my many interests, including knitting, gardening, playing bridge, reading, cooking and spending time with my family. My great interest in life is playing golf. It has been an incredible help for me. You get out there and you forget about your worries. At my golf club, they’ve started a Pink Ladies golf day. We play nine holes, have lunch and talk about our experiences. It’s been a great source of support and friendship over the years. I am fortunate not to have any ongoing challenges from my breast cancer treatment, however, Herceptin can increase the risk

trip overseas to visit family in North America.

Trodelvy is now available on the Pharmaceutical Benefits Scheme (PBS). I am keen to spread the word to other people with metastatic TNBC and suggest talking to your treatment team to see if Trodelvy might be right for you. I work in the field of organisation development and can be a bit of a people pleaser, but throughout my breast cancer experience I decided I wasn’t going to be passive and just go with what was served up to me. I learned to be proactive, which really helped me throughout my treatment. I did a lot of my own reading and research, always went to my medical appointments with loads of questions for my doctors, and explored alternative therapies such as acupuncture to help improve my treatment experience and side effects. I first heard about Trodelvy in June 2021 during one of BCNA’s webcasts. It talked about TNBC and the latest developments in treatment, including this specific drug which was being trialled in America. I wrote down the name to ask my oncologist about it and told her I was interested in participating in a clinical trial for it. In December, she let me know there was an opportunity to get ‘early access’ to



BCNA Policy & Advocacy played a key role in advocating for the addition of Trodelvy to the PBS to help alleviate the significant financial barrier to accessing this important treatment. As new treatments emerge, we will continue to be a voice for those with breast cancer and advocate for timely consideration of new treatments for subsidy.



September 2022 | Issue 92

Breast Cancer Network Australia

Issue 92 | September 2022


BCNA Consumer Representative Naveena Nekkalapudi

Medical Oncologist Professor Bogda Koczwara

B reast cancer side effects, some of which are long term and can be physically and emotionally challenging. BCNA recently presented a webcast with Medical Oncologist Professor Bogda Koczwara and BCNA Consumer Representative Naveena Nekkalapudi about how to best manage long-term side effects. They answer some more questions on this important topic in this issue of The Beacon . The information in this article is not a substitute for medical advice. Please speak to your treating team for specific advice. treatments can cause a range of HOW CAN I MANAGE LONG- TERM SIDE EFFECTS OF BONE AND JOINT PAIN? Bogda: Joint stiffness and pain can be distressing side effects of aromatase inhibitors. Exercise and healthy weight seem to protect from joint symptoms, while exercise, especially yoga, can help manage joint pain. Acupuncture and painkillers such as paracetamol can also help. Your doctor may identify other conditions

WHAT CAN I DO? Bogda: It is normal to struggle through a range of emotions. The first step is to acknowledge that it is ok to feel them and consider asking for help. Peer support can be incredibly beneficial as can specific resources, such as BCNA’s excellent Upfront about Breast Cancer podcast series by Dr Charlotte Tottman . In some cases, you may need professional help. Your GP can provide a referral. Naveena: I found it helpful to journal about my thoughts and feelings. I also chose a couple of friends as confidants to share my concerns with. I would make time for fun things, such as catching up with friends, or distract myself with jigsaw puzzles, reading, gardening or exercising/playing with the dog to break the ‘worry loop’. I HAVEN’T HAD A GOOD NIGHT’S SLEEP SINCE I STARTED MY DRUGS AFTER TREATMENT. WHAT COULD HELP ME? Bogda: Start with the basics: establish a pre-bed routine, avoid alcohol and caffeine, remove screens from the bedroom, and limit daytime naps. If these strategies do not help, identify what is interfering with your sleep,

Naveena: Try to stay as active as possible to maintain your stamina. I did not do much during treatment so it took me a very long time to recover my energy levels. WHAT CAN I DO TO HELP MY SOFT, BRITTLE NAILS AND TINGLING IN MY FINGERS? Bogda: To manage brittle nails, ensure that they are trimmed short and wear good footwear and gloves if you’re gardening. A multivitamin may help if your diet is deficient. Tingling in fingers may be a symptom of many conditions, including peripheral neuropathy or carpal tunnel. See your doctor to find out what the cause is and how to manage it. Naveena: During chemotherapy, I painted my nails a very dark colour to protect the nail bed. Now I go to a salon that offers the Signature Nail System (SNS), which prevents my nails from breaking. Plunging my hands and feet into uncooked rice helped alleviate the tingling when it was really bad. THE SIDE EFFECTS FROM TREATMENT ARE DIFFICULT, BUT I AM REALLY STRUGGLING WITH THE EMOTIONS I AM FEELING BECAUSE OF THEM.

that predispose you to pain, recommend specialised treatments or change your hormone-blocking treatment to one that does not cause these symptoms. 1,2 Naveena: I tried to maintain a healthy weight by doing exercises, such as swimming and water aerobics, that eased pressure on my joints. I also enrolled for a breast cancer rehab program offered at my local private hospital. Some public hospitals offer similar programs. The exercise physiotherapists understood the limitations of a cancer survivor and tailored activities to suit me. I AM IN MY THIRD WEEK OF TAKING A NEW DRUG AND I AM REALLY STRUGGLING WITH THE HOT FLUSHES, NIGHT SWEATS AND JOINT PAIN. WHEN WILL THESE SIDE EFFECTS BE MORE MANAGEABLE? Bogda: Hot flushes and joint pain tend to improve over time but that does not mean that you just need to grin and bear it. Acupuncture may reduce these symptoms and is great for joint

such as hot flushes, anxiety or pain, and ask your GP for help to manage them. Naveena: I am now seven years post active treatment and I still have trouble sleeping! I try to go to bed at the same time every evening, play some sleep music, and have a notepad next to my bed to capture any urgent thoughts. I also take a short afternoon nap to catch up on sleep on those days when none of these strategies work!

stiffness. Managing any coexisting health concerns such as weight gain and poor sleep is important. Ask your treating team if there’s an alternative hormone-blocking therapy with fewer side effects. Some antidepressant medications may also help. Naveena: I sleep with a fan on, wear cotton pyjamas and use a lighter doona to manage hot flushes. I also take pain medication prescribed by a pain specialist. IS THERE ANY DANGER IN PUSHING THROUGH FATIGUE? I HAVE BEEN TOLD MOVING MY BODY WILL HELP EVEN THOUGH I AM TIRED. Bogda: It is a delicate balance. You do not want to overdo it, but gentle exercise is one of the best ways of managing fatigue. Ask your GP for a medical assessment to check if you have any conditions that contribute to your fatigue. Then, identify your baseline level of physical activity and work from there. If your baseline is a 10-minute walk twice a week, try increasing it to 12 minutes or maybe 10 minutes three times a week.

Watch the Managing long-term side effects of breast cancer treatment webcast

Read more about managing side effects via My Journey

1. Management of Aromatase Inhibitor–Induced Musculoskeletal Symptoms | JCO Oncology Practice ( 2.  Efficacy of management strategies for aromatase inhibitor-induced arthralgia in breast cancer patients: a systematic review - Nahm - 2018 - Asia-Pacific Journal of Clinical Oncology - Wiley Online Library



September 2022 | Issue 92

Breast Cancer Network Australia

Issue 92 | September 2022





T hursday 20 it is estimated 212 men will be diagnosed each year in Australia with breast cancer. Men with breast cancer may experience feelings of isolation and loneliness. October is Male Breast Cancer Awareness Day. Although rare, cancer in men and provide information and resources for those diagnosed and their supporters. You can learn more about men and breast cancer in the resources below: • BCNA website • Men get breast cancer too booklet • My Journey : Explore articles and watch the welcome video featuring men from our network • Podcast : Listen to our new episode, In Conversation with Harry and Pieter: Raising awareness for men with breast cancer . In this episode you’ll hear their stories, the challenges they face and who they went to for support. BCNA aims to raise awareness of breast Upcoming event On Thursday 20 October BCNA will be presenting an interactive digital event for men diagnosed with breast cancer. The event will be hosted by Professor John Boyages and aims to bring together men affected by breast cancer across Australia. More details will be available soon via the BCNA website.

M y experience of breast cancer the second time around was a very different journey compared to the first one and I wanted to share some of the things that made me feel empowered. I was first diagnosed with early breast cancer in 2010 when I was 52. I had a lumpectomy and radiotherapy. That first experience was not good at all. I only had access to a breast surgeon in my town and had to travel an hour to the city for treatment. I remember feeling very lonely and unsupported by my treatment team. When I started having problems with calcification in the breast, I decided to change doctors and specialists. I asked for new referrals to a whole new team, including a new, lovely GP. It was the best thing I ever did. In 2021, they found the breast cancer had returned in the same breast and, this time, it was aggressive.

Even though it was all a rush after that, this time I felt like I had a great team. I needed a mastectomy and decided to have a DIEP flap reconstruction at the same time. I felt confident asking the surgeon to explain all the benefits and risks. I felt empowered to question anything that was done to my body. The big difference this time around was COVID. It was the worst thing for me, and I think probably why I’m struggling a bit now. I spent 59 days in hospital last year. It was incredibly difficult to spend so much time alone, while feeling my absolute worst. On the upside, just before I’d been diagnosed, I had decided to organise a fundraiser for BCNA in the lifestyle village I live in. I worked on it through my treatment and it was my saviour. The Hearts and Roses Pink Lady Charity Ball gave me a distraction and focus. The ball was held in May and all my medical team came along. It was a great night and we raised more than $16,000!

Since then, I have felt a bit lost as my treatment ended in December. My team has been incredible, but I think a psychologist should also be included in every treating team. Often once you hear that C word, you get caught up in what’s next in terms of appointments, surgery and treatment. It’s only when you get quiet time that, all of a sudden, it starts to hit you what you have actually been through. I’m frustrated at myself for being in this post-treatment slump and I almost feel guilty that I’m struggling. I found the Upfront about Breast Cancer podcast series with Dr Charlotte Tottman really helpful. I feel the happiest when I’m giving back and doing something for other people. I just want to do something to help other women get through it, like sharing my story here in The Beacon and volunteering to support others affected by breast cancer. Then I think it will start to feel like it all happened to me for a reason.

Harry and his wife Yvonne

ADVOCATING FOR THE MEN Harry Brooks is living with stage 4 metastatic breast cancer and shares his experience in the hope it helps other men to be aware that they, too, have a risk of getting breast cancer. Why do you want to raise more awareness for men with breast cancer? When I first found out I had I rang BCNA and met with them and asked what they were doing for men like me. They listened and made an effort to understand my concerns. Since then we have worked together to raise awareness of men with breast cancer. What is your advice for other men with breast cancer?

Accept the situation for what it is and don’t for one moment feel ashamed because there is no reason to. I also think it’s important to enjoy life and never give up. Hold onto hope. I think men tend to hesitate seeing

breast cancer, I felt ashamed and embarrassed. I didn’t want to tell anyone. I felt like there was a stigma about having what people generally consider to be a woman’s disease. Then I had chemo and lost my hair and realised I couldn’t keep it a secret, so I decided to be upfront and talk about it openly. I hope this helps reduce any stigma. How did you find out about BCNA and how have they helped you? A few years after I was diagnosed, I was watching a current affairs show about women and breast cancer, and I got upset they didn’t mention men.


their doctor. I didn’t go to my GP about the lump I had but I did mention it while I was at an

appointment for an unrelated issue. My advice to other men generally is don’t ignore your health. Don’t ignore the slightest concern. Go and have a proper check-up every year.

Patti at The Hearts and Roses Pink Lady Charity Ball



September 2022 | Issue 92

Breast Cancer Network Australia

Issue 92 | September 2022


BREAKTHROUGHS IN BREAST CANCER RESEARCH The 2022 American Society of Clinical Oncology (ASCO) Annual Meeting was held in early June. Cancer researchers and clinicians from around the world gathered to discuss the latest research and how to ensure that all people with cancer receive the care they need.

CLINICAL TRIALS CHANGING THE FUTURE OF BREAST CANCER Most of the major treatment advances for breast cancer are based on results from clinical trials and studies conducted with people in Australia and overseas. The benefits of participating in a clinical trial include early access to new treatments, close monitoring and developing new treatments that may help other people diagnosed with breast cancer in the future. BCNA will continue to advocate for improved access to clinical trials, especially for those who live in rural and regional areas who may struggle to access clinical trial sites. trial, speak with your treating team to see if you are eligible. Many trials for breast cancer treatments are run in Australia (and New Zealand) by Breast Cancer Trials . If you are interested in participating in a clinical Also on the topic of radiotherapy, the LUMINA trial evaluated the rates of breast cancer recurrence in women who have undergone breast- conserving surgery for luminal A breast cancer, a subtype of ER+ HER2- breast cancer with a particular protein bio-marker. Participants were treated with adjuvant endocrine therapy alone, without adjuvant radiation, after breast- conserving surgery. Study findings show the five-year rate of local recurrence was only 2.3 per cent, which suggests that some people with luminal A early breast cancer may be able to safely avoid adjuvant radiotherapy and reduce the length and impact of treatment.

Professor Bruce Mann is the Study Chair of PROSPECT and the Director of Research at BCT. He is also a BCNA Board member. ‘Until now attempts to identify large numbers of patients diagnosed with early breast cancer who can safely avoid radiation therapy have had limited success and subsequently breast conserving surgery with adjuvant radiotherapy is recommended for most patients. Various trials are using new methods of analysing the known cancer to find those at minimal risk of recurrence, but PROSPECT is the only trial we know of that is focusing on previously unsuspected ‘occult’ cancers. The results are even better than we expected and hoped for.’ Professor Mann said.

Professor Bruce Mann

In this article, The Beacon highlights some of the key successful breast cancer trials. However, among the breakthroughs and advances at ASCO there were also some setbacks with some trial results not as promising as had been hoped. Even when results suggest a treatment may not be better than the current treatment, the learnings from the research can lead to the development of other, more effective treatments. SIGNIFICANT CLINICAL RESULTS FOR METASTATIC BREAST CANCER TREATMENT When the results from the DESTINY-Breast04 phase III clinical trial were announced, the audience of oncologists and researchers united in a standing ovation. This clinical trial – widely considered the biggest breakthrough in breast cancer research since Herceptin was approved in 1998 – evaluated the effectiveness of trastuzumab deruxtecan (Enhertu™) compared to chemotherapy, in patients with

HR-positive or HR-negative, HER2-low metastatic breast cancer. HER2-low breast cancer (IHC 1+, or 2+/ISH-negative) has not had targeted treatment until now. When compared to standard chemotherapy, the results show that treatment with trastuzumab deruxtecan (Enhertu™) doubles progression-free survival among people with metastatic breast cancer that expresses low levels of HER2. The treatment can also lengthen a person’s life, regardless of their hormone receptor status. Although it will take time to pass through the regulatory requirements, it is hoped this treatment will become a new standard of care for people with HER2-low in the future. PROGRESS WITH EARLY BREAST CANCER TREATMENT Breast Cancer Trials’ (BCT) PROSPECT study showed that use of magnetic resonance imaging (MRI) before surgery may identify people with a low risk of breast cancer recurrence who could be treated safely

without radiotherapy. MRIs were able to identify additional areas of cancer or pre-cancer in the breast that standard imaging (mammogram and ultrasound) were unable to detect. It was hypothesised that most recurrence from early breast cancer was from the previously unidentified ‘occult’ cancer, leading researchers to believe that if the breast was clear of these, then it may be safe to avoid radiotherapy. Approximately 200 people were found to fit the study criteria and were treated without radiotherapy. The recurrence rate after five years was only 1 per cent, leading to the conclusion that treatment without radiation appears to be safe for people identified through MRI as having a lower risk of recurrence. Radiotherapy is often associated with a number of side effects and high toxicity that can affect people even after treatment has stopped. Being able to safely avoid radiotherapy for some people may allow for higher quality of life and even alleviate some financial impacts of breast cancer by facilitating a quicker return to work.

‘The results are even better than we expected and hoped for.’ – Professor Mann



September 2022 | Issue 92

Breast Cancer Network Australia

Issue 92 | September 2022



R eviewing your private health insurance policy may be the last thing you feel like doing, but it can also be empowering to take control of your finances. You can check your cover still suits your needs and perhaps even save some money in the process. Many of our members have questions about private health insurance after a breast cancer diagnosis. Here are some tips from Laura Crowden, Corporate Affairs Manager at iSelect, an insurance comparison service. Does my breast cancer diagnosis affect my options to change providers or policies? No, when it comes to private health insurance in Australia, if you have had a breast cancer diagnosis, your options to change providers or policies are the same as someone who hasn’t had cancer. Will I be charged more for the same policy as someone who doesn’t have breast cancer? You cannot be charged more for private health insurance or refused cover based on your medical history. Health insurance is different to other insurances such as life insurance or travel insurance, where a pre-existing condition may affect the type of cover you can access and/or how much you pay for it. With health insurance, a pre-existing condition will not affect the level of cover you can access or the price you pay, however, you may have a 12-month waiting period before you are covered for the pre- existing condition. If I change policies, or providers, do I have to serve my waiting periods again? With private hospital cover, any waiting periods you’ve already served will be protected by law as long as you swap to an equivalent or lower level of cover. If you take out a higher level of hospital cover, you will only need to serve the waiting periods on the new services you’re adding to your policy. If you had a gap between having cover, you may have to re-serve the waiting periods, depending on the length of time between insurers. Should I tell a new private health insurance provider about my medical history? Yes, it’s important the provider knows what your medical needs are so they can help you choose the most suitable cover. Remember, you can’t be charged more based on your medical history.

When should I consider changing my cover and/ or provider? Don’t set and forget as you may be paying for cover you no longer need. You may want to review your private health insurance cover each year to ensure it still suits your life stage and health needs and offers value. Some providers offer Silver Plus products which can be great value for older customers and may cover things such as hip replacements or cataracts while excluding services such as pregnancy. If you currently have a couples policy but you and your partner have different health needs, you may be able to save money and better tailor your cover by splitting your cover from a couples policy to two singles. Many people take up combined policies for hospital and extras cover with the same provider but there could be no financial benefit. You can choose to split these policies across different providers. How do I compare policies? Private health insurance can be really confusing, so speak to someone who can help. Contact your current insurance provider to discuss your needs or use an online insurance comparison site to find out what other options are available. For more information, read BCNA’s Managing the financial impacts of breast cancer factsheet.

LGBTIQ+ Lived Experience Reference Group member Laurie (right) and her partner

W e have made great progress in the first year of our Strategic Plan: Towards 2025 by focusing on policy and advocacy work that aims to reduce the costs for people diagnosed with breast cancer. Key highlights are: • updating the Managing the financial impacts of breast cancer fact sheet • launching the podcast Work after breast cancer: Tackling the difficult conversations • raising awareness of your rights when it comes to private health insurance on page 14 of this edition of The Beacon . BCNA has continued working on the Medical Costs Finder, a Federal Government initiative to increase transparency of out-of-pocket medical costs. We also recently made submissions in support of the drug trastuzumab deruxtecan (Enhertu™) for HER2-positive metastatic breast cancer to be listed on the PBS, and of the genomic test EndoPredict™, to improve equity of access and reduce the cost of breast cancer treatment. Year two of the strategic plan focuses on improving equity for all people affected by breast cancer and their access to optimal breast cancer care.

We aim to: • increase awareness of what should be expected as ‘best breast cancer care’ • identify pathways for increased consumer participation so the voices of people with breast cancer are heard at places where decisions about breast cancer care and research are made • explore and help address unmet treatment and supportive care needs of people with breast cancer, with a focus on people living with metastatic disease. LGBTIQ+ resources and support Earlier this year we published new resources, including 13 articles and two podcasts, for people from LGBTIQ+ communities affected by breast cancer. These resources were informed by Professor Jane Ussher’s ‘Out with Cancer’ study and BCNA’s LGBTIQ+ Advisory Group. You can access the new resources here . The LGBTIQ+ Advisory Group has evolved into the Lived Experience Reference Group. This group will contribute insights and raise issues and topics of interest and importance for people from LGBTIQ+ communities affected by breast cancer.

‘Being able to talk about my experiences of dealing with a breast cancer diagnosis and being queer has helped me greatly. I also hope that it has helped others by supporting the resources now available on BCNA’s website and My Journey’. – Cathy conversation, email your expression of interest to Addressing fear of cancer recurrence among Aboriginal and Torres Strait Islander women Through our continuing partnership with the University of Queensland, we are progressing work on this issue. The first phase of this study, conducted in 2020, found that Aboriginal and Torres Strait If you identify as part of an LGBTIQ+ community and are interested in joining this The next phase of this work will focus on developing or adapting resources to better support Aboriginal and Torres Strait Islander women with breast cancer to help them with their concerns. BCNA is inviting participants to be involved in the study. If you identify as Aboriginal and/or Torres Strait Islander and would like to participate, please see here for more information. Islander women had a higher fear of recurrence than non- Indigenous women.




Breast Cancer Network Australia

Issue 92 | September 2022

September 2022 | Issue 92


Cancer can be really lonely. And one of the reasons I’ve come to the forum today is to meet other people.

I’m really looking forward to that. – Jenny

W e have enjoyed being back on the road for our in-person Information Forums after years of COVID restrictions. From Ballarat to Launceston, we have been visiting communities to hear your stories and provide you with information and resources to help you at every stage of your breast cancer diagnosis. Our Information Forums have not only provided you with a chance to hear from and meet our speakers, they have also been a fantastic opportunity for you to meet other people going through a similar experience and connect with local community and support groups.

I was so inspired by the courage of women who have breast cancer and their determination to continue on. – Karen


For the last six months I’ve just been focused on chemotherapy and living my best life while I’ve had chemotherapy. But now the clouds are starting to lift and I’ve got to prepare for what’s ahead. I thought this would be a really good opportunity to get some advice and insights for the coming months. I haven’t met anyone else who’s in the same boat, so I thought it’d be great to meet some of the people who are living with cancer today. – Georgina

Keep an eye on the BCNA website for

upcoming locations. We hope to be back on the road again soon!



September 2022 | Issue 92

Breast Cancer Network Australia

Issue 92 | September 2022

WORKPLACE GIVING CAMPAIGN To mark Workplace Giving Month, BCNA ran an online campaign throughout June that focused on the importance of having a supportive employer and colleagues at the time of a breast cancer diagnosis. BCNA can help make difficult workplace conversations associated with breast cancer easier. To learn more about becoming a BCNA workplace giver visit the BCNA website or contact Eliza Sadler –


VILLAGE ROADSHOW THEME PARKS GOLD COAST MARATHON Thank you to three of our long-time supporters, Robert Kirby, Sarah Sharpe and Terri Alexander, who took part in the Village Roadshow Theme Parks Gold Coast Marathon in July and raised over $67,048 for BCNA. We are very grateful for your incredible support.


Sarah (left)


GET TO KNOW YOUR LOCAL BAKERS DELIGHT FRANCHISEE, WARNERS BAY, NSW Meet Matthew and Danielle! They have owned and managed the Warners Bay franchise since 2008. They are supported in store by

MIDDY’S LADIES’ LUNCHEONS This year, Middy’s have held three Ladies’ Luncheons in Victoria to bring the team together to raise money and awareness for BCNA. Through the luncheons and a Pink Bun Morning Tea, Middy’s raised over $34,000 and, thanks to the Middendorp family generously matching every dollar, donations have now exceeded $68,000. Thank you Middy’s for your ongoing support!

Alyssa, the ‘sales guru’ who has been a part of the Bakers Delight family for 11 years, and the extended team also includes Danielle and Matthew’s daughter and two of Alyssa’s siblings. The team love the Pink Bun campaign and thank their amazing staff and customers, including the local footy club, who supported the campaign this year to help them achieve their highest campaign year yet. This year they raised over $12,187 and have donated over $46,000 since owning the store. ‘ We hope we have helped create and build awareness here in Warners Bay and surrounds! We personally know many people who have been diagnosed with breast cancer, so being able to spread the message of how BCNA can help and support Australians who have been affected by the disease has been extremely rewarding.’ Danielle said.

FREEMASONS COMMUNITY FUNDRAISER BCNA received a generous donation from the members of Gregorios Lodge and Freemasons Foundation Victoria to fund new laptops to help BCNA continue to be flexible and adaptable in providing its services. Thank you for this wonderful show of support. L-R: WBro Nicholas Nerantzoulis, Worshipful Master of Gregorios Lodge 865, Kirsten Pilatti, BCNA CEO, Bro Neil Cripps Freemasons Foundation Victoria CEO, Irene Nerantzoulis, Gregorios Social Committee Chair, MWBro Richard Elkington, Grand Master of Freemasons Victoria, Lisa Charalambidis, Gregorios Social Committee Member and WBro George Charalambidis, Treasurer, Gregorios Lodge.

BCNA Foundation Partner

BCNA Major Partners



September 2022 | Issue 92

Breast Cancer Network Australia

Issue 92 | September 2022

Field of Women 2023


ext year BCNA will celebrate 25 years and to mark the

M A T C H − 2 0 2 2

O n the evening of Thursday 23 June, the AFL Pink Lady Match was played in front of a crowd for the first time in three years. More than 37,000 fans flocked to the MCG to witness Melbourne Football Club take on the Brisbane Lions in a top- of-the-table clash. It was a thrilling game with BCNA partner and reigning AFL premiers, the Dees, wearing Pink Lady socks to support Australians affected by breast cancer, while the goal umpires showed their support by waving pink flags for every goal and behind. Women and men diagnosed with breast cancer, as well as families and friends of those we have lost, stood together in a pink and blue guard of honour as Melbourne players ran out onto the ground, while another 1,000 sat in the dedicated Pink Lady Bay to cheer them on. Outside the ground, match partner Red Energy powered BCNA’s tribute field in a moving show of support for all Australians affected by breast cancer. It’s always a special place for match goers to visit before the game, to reflect and connect, and leave a message of support or in memory of someone they love. The primetime broadcast also turned pink enabling viewers at home to get involved by buying a place to stand in the virtual Pink Lady on the ‘G. The new PLAY4BCNA beanies were a popular purchase, both at the game and online, resulting in a sell-out for the first time ever!

special occasion we will hold the sixth Field of Women, where over 10,000 people affected by breast cancer will stand on the MCG prior to the Pink Lady Match to form the shape of the Pink Lady and raise awareness of the impact of breast cancer. Network members from around Australia are invited to join us for this moving event. Register your interest via the BCNA website and receive priority updates about the event.

and Pink Sports Day program, over the past 18 months Red Energy has contributed over $170,000 to BCNA on behalf of customers on a Red BCNA Saver plan. You can help support BCNA by signing up to a Red BCNA Saver plan today. Find out more by clicking below.

Red Energy has been a supporter of BCNA since 2015 with a mission to contribute, support and collaborate with what is a very personal and emotional cause to many Australians. The Red BCNA Saver plan not only helps to raise awareness of breast cancer

in the community, but also contributes up to $120 a year directly to BCNA . That’s $5 for electricity and $5 for gas each month, on behalf of every residential customer on the Red BCNA Saver plan.* Now that’s worth turning Red for! In addition to its support of BCNA’s annual Pink Lady Match



September 2022 | Issue 92

Breast Cancer Network Australia

Issue 92 | September 2022

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