Friday Update - 17th April 2025
Hi everyone, We’re back with your latest update from Breast Cancer Network Australia (BCNA)—keeping you across activity happening within the organisation and the broader community. Whether you’re newly diagnosed, navigating treatment, or supporting a loved one, we hope you find the update useful. We cannot believe it is Easter already! Hope you can enjoy the time in a way that feels right for you. You may even like to grab a hot cross bun this Easter at Bakers Delight! Did you know Bakers Delight and BCNA have had a partnership for 25 years? (Read more about this amazing partnership in this update). 📚 Resource of the Month: “My Journey” upgrade If you haven't explore it it yet, BCNA has launched its new My Journey with better information and support for people impacted by breast cancer! You would've noticed that My Journey and Online Network can now be found in one place for a more streamlined user experience across all devices. We collaborated with consumer representatives and healthcare professionals in creating and reviewing our evidence-based content, ensuring the new My Journey features a broad range of the latest and most credible resources for you. Watch the video here of Naveena (BCNA Consumer Representative) talking about how to navigate the platform. If you have any questions, please go to our Frequently asked questions page in the first instance. To ensure we do not miss any of your feedback or technical issues please log these under the Get in Touch form to ensure feedback is collected in the centralised area. A special thank those of you who have supported us with feedback and troubleshooting solutions during the transition to the new platform. 📢BCNA in Action: Policy Priorities 2025 With breast cancer being the most common cancer affecting Australian women, annually it is costing the Australian Government nearly $1.8 billion. As we approach the federal election, BCNA is advocating for systemic change in four key areas: Reducing the financial costs of breast cancer treatment and support – Women with breast cancer experience high out-of-pocket healthcare costs as well as indirect costs such as loss of income, leading to substantial financial burden. Prioritising risk-based stratification for early detection and breast screening programs – Genetic conditions and breast density can significantly increase breast cancer risk. Access to specialist diagnostic and screening tests is limited due to restrictive eligibility criteria, cost, and workforce shortages, particularly in regional areas. Addressing unmet supportive care needs for people impacted by breast cancer – Advances in treatment continue to improve survival rates, but physical and emotional impacts such as chronic pain, fear of recurrence, and lymphoedema remain complex and require greater attention. Investing in a sustainable and comprehensive cancer data ecosystem – The lack of comprehensive cancer data, including metastatic staging and recurrence, limits evidence-based healthcare planning and investment. In addition to these priorities, BCNA continues to work alongside the Australian Access to Breast Reconstruction Collaborative Group (AABRCG) to advocate for those at inherited risk of breast cancer to access surgery as a Category 2 rather than Category 3 - preventing people from being diagnosed with breast cancer while they wait for essential risk reducing surgeries. To read more about this collaboration click here. We are also continuing to drive policy reforms that enhance metastatic breast cancer (MBC) staging and recurrence data reporting. 📢BCNA in Action: National Cancer Survivorship Conference 2025 BCNA recently hosted a pre-conference workshop From Patient to Partner: Unlocking the power of consumer engagement at the 2025 National Cancer Survivorship Conference , aligning with the conference’s goal of building capability and capacity in survivorship care and research. The workshop focused on strengthening research impact through effective consumer-researcher partnerships. The session explored best practices for embedding consumer voices in research to enhance study design, improve relevance, and drive meaningful translation into clinical practice. Led by BCNA, in partnership with COSA, the University of Queensland and Translational Research Institute, the workshop highlighted collaborative approaches to integrating consumers into survivorship research, supporting sector-wide learning and capability building. BCNA funded the attendance of BCNA Consumer Representatives and supported the involvement of other peak cancer NGOs involved in the ACNNP to come together. There was shared interest to prioritise reducing barriers and increasing participation in consumer engagement in research, policy and practice. For those newer to consumer engagement, conversations provided encouragement on how to keep moving forward with curiosity and respect. We look forward to sharing the formal evaluation outcomes with all participants and our network. Hear about the conference highlights 🤝BCNA Celebrating partnerships RED ENERGY For a decade now, Red Energy has turned pink for BCNA. Yesterday BCNA and Red Energy celebrated an incredible 10 years of partnership. Since 2015, Red Energy has supported the 58 Australians diagnosed with breast cancer, including being a Major Partner of Pink Lady Match and Pink Sports Day program, which galvanises communities across Australia. Red Energy’s belief in BCNA’s cause manifested itself in the development of the Red BCNA Saver Plan*, through which Red Energy has contributed over $2.3 million on behalf of its customers. 🔗Read more about the impact of this colourful and thriving partnership via the link Red Energy's 10 years of turning pink for BCNA BAKERS DELIGHT From 1–21 May 2025, Bakers Delight bakeries across the country will turn pink to show their support for Australians affected by breast cancer. This year marks a very special milestone, 25 years of partnership between Bakers Delight and Breast Cancer Network Australia (BCNA). Together, we’ve raised over $27 million to ensure that no one diagnosed with breast cancer is unsupported. 🔗Read more about this incredible partnership via the link Bakers Delight Breast Cancer Campaign Partnership 🎉 Event Spotlight: Carman's Fun Run is coming to Sydney in 2025! Carman's Fun Run SYDNEY 2025! We’re thrilled to share that the wildly popular Melbourne event Carman's Fun Run is coming to Sydney in 2025! Join us on Sunday 21 September as Metcalfe Park, Pyrmont, turns pink as our partners at @carmanskitchen and @solemotive bring this fantastic event to a brand-new city. Whatever your speed, we have an option for you. Choose to join our 5km, 10km or half-marathon run, or gather your friends and family for the 5km Pink Lady Walk. If you register now, you’re taking advantage of the EARLY BIRD RATE! Be quick because this discount stops 29 April 2025. Click on the link to find out how to register Register Here 👂 We Want to Hear From You! What topics do you want to see more of in the community? Share your feedback, questions, or ideas via helpline@bcna.org.au or reply directly to this post. Take care and keep the conversations going! @BCNA_Mod Team
Would like to chat to others
Hi all I am 6 months post bilateral mastectomies and still having a few issues. Haven’t been to follow up appointments because I am a nurse and hate being in the patient side. Haven’t been to also avoided all counselling as I feel there are women far worse off than me but would be good to chat to women who have been through the same. Emma
Dr Jo Prendergast "Cancer and Cartwheels"
What happens when a comedian’s life gets flipped over by cancer? They find the funny side of course. But can cancer be funny? When psychiatrist Dr Jo Prendergast was diagnosed with breast cancer in May 2021, she asked herself what good she could do with the treatment experience. As someone who cannot be idle - even during chemo - she put together a website on managing chemotherapy side-effects, made a semi-viral TikTok, and wrote her second comedy show. At the four-year anniversary of her diagnosis, Jo is cancer-free and ready to laugh about the tough stuff. She is inviting us to laugh with her. Jo's Cancer and Cartwheels show is touring nationally and supporting Breast Cancer Network Australia (BCNA). Jo has offered BCNA a limited allocation of double passes to each of her comedy festival ‘opening night’ shows in Adelaide, Melbourne, Sydney and Brisbane. If you would like to register to receive a complimentary double pass with a post show meet, greet and photo register here Cancer and Cartwheels - performance schedule and dates (opening night in bold): Adelaide : March 11 - 15, 2025 Melbourne : March 31 - April 6 2025 Sydney : April 26, 2025 Brisbane : May 17 -18 2025 Jo is also aiming to raise $5,000 through her shows to help BCNA continue to provide free support and resources for all Australians affected by breast cancer. This year more than 21,000 Australians will be diagnosed with breast cancer. She is encouraging her show attendees to make a donation and leave a message or dedication on her event fundraising page. Any donation over $2, will be issued with a tax-deductible receipt. If you would like to read more about Jo there are also the following social media handles / links: @cancerandcartheels @drjoprendergastcomedy and https://drjoprendergast.com
Share your views: Information and support needs of people following treatment of breast cancer
Hi everyone, Erana from BCNA here! I’d like to invite you to participate in a research study opportunity led by James Cook University. Please see details below. If you can't access the QR code you can also follow this link Qualtrics Survey | Qualtrics Experience Management. If you have any questions or concerns regarding this research, please contact the research lead Tracey Ahern at tracey.ahern@jcu.edu.au This study has been approved by the James Cook University Australia Human Research Ethics Committee (#H9326).Volunteer for Pink Bun campaign
Do you, or someone you know, have time between now and the end of May to support Breast Cancer Network Australia (BCNA)’s biggest fundraiser? We are looking for people to help coordinate Pink Bun Campaign Volunteers with events at Bakers Delight bakeries from May 1st to 21st, 2025. The role involves working with other BCNA volunteers in your community and Bakers Delight bakeries, with support from BCNA staff. People who enjoy talking to others and are comfortable with basic computer skills can apply here to register their interest. Please forward this link onto anyone you know who might be able to help. We are especially looking for support in NSW, the ACT QLD, and WA. Funds raised though the Pink Bun Campaign are vital to BCNA’s ability to support Australians affected by breast cancer. If you don’t have the availability to support BCNA in this role, please keep an eye out for details on how you can support the campaign with a spare hour or two. Check out the behind the scene video from last year's campaign https://www.facebook.com/bakersdelight/videos/bcna-pink-buns-are-back/754110623542494/
Public patient Private radiation (Toowoomba)
Hi everyone, Just wanted to share a useful bit of info for anyone going through something similar. My nearest radiation facility is 4hrs drive away in Toowoomba, but it’s private & I am a public patient. I went for my planning appointment this week & at the end I was taken aside into a small office & given my ‘Estimated Fees’. The admin officer asked if I had means to pay $6000 on day 1 upfront, and that would then be rebated through Medicare. The grand total of 3 weeks treatment was $15000. I said that I could maybe borrow money from a relative. I felt very patronised & have been stressing for the past few days about how to get that money upfront. To top it off my (old) car broke down on the trip home, so now I need to buy a new one - ugh! I went to see my wonderful GP today to ask him to sign a Compassionate release of Superannuation form. He said ‘You shouldn’t have to touch your super, you’re a public patient!’ He rang the private hospital and clarified that it would be difficult to access money (particularly after being off work for surgery & chemo since May 2024). A lovely admin phoned me afterwards & explained that Medicare can fund the upfront payments. I just have to sign a form that they email me & each week of treatment I will have the funds from Medicare land in my account & it will then transfer across to the private hospital. I will only have to pay a total of $1000 over the course of my treatment. Phew! I was so stressed about this. Apparently this is not an option for all patients, but I think it’s important info if anyone else is in the same boat. The last thing we need is extra stress!Recovery times and support required following mastectomy and chemo
Sorry for long post... I'm new to this group. I was confirmed 2 days before Christmas with DCIS and suspected Paget’s Disease. I am facing a mastectomy and possible chemo, etc. I'm now looking at what my options are with respect to reconstruction. I’m seeing my breast surgeon tomorrow with my growing list of questions. So far she has suggested a reconstruction of the affected breast using a bit from my tummy. I asked about a double mastectomy - which she would support - but she said that type of reconstruction may not be possible as I don't have enough 'flesh' on my tummy. I'm still not sure what to do but I'm leaning towards a double as I don't want the anxiety of annual check ups moving forward, especially for my kids. I haven't met with a plastic surgeon yet, given the time of year. I am a 54 yo working single mother of 3 beautiful (mostly) humans aged 13, 16, 17 as well as 2 dogs and 2 useless cats. It's been a tough few years. My wonderful husband died unexpectedly in November 2023. Two months before that his mother also died suddenly and two months before that my mother had a life threatening seizure in front of me and was put into an induced coma and was in ICU for 3 days - she had had a stroke and breast cancer 6 months before that and she has Alzheimers. She then went into care two weeks after my husband's funeral. My Dad lives near by and is healthy - thank goodness. Given what's been going on, 'I don't have much left in my tank' to deal with this latest challenge but it is what it is. I am very lucky to have some wonderful friends and family (however it's not the same as having your partner support you.) So, I'm trying to prepare myself for what's coming - physically and emotionally. I'm wanting to understand what kind of help I'll need following surgery or surgeries. What will my energy be like? How long until I will be able to work, cook, clean, drive, etc? My kids are as helpful as any teens - which is OK but not great and the two eldest have especially busy schedules with lots of activities on top of doing their VCE. I appreciate that every situation is unique but knowing how others - particularly other single parents - have managed will help with my decision making and help me prepare for what lies ahead. Also, any referrals for mortality/grief counselling in Melb would be appreciated. Thank you. xx
16 Weeks Pregnant and diagnosed with aggressive hormonal breast cancer
As the title says, I am currently 16 weeks pregnant with my first child, I turn 32 in Feb and have no family history of breast cancer. My surgeon has said I will need a mastectomy in the next week or 2. To say overwhelmed and unsure about my future is a complete understatement. I have found limited people in the same position as me and really don't feel confident as much as everyone has told me to stay strong and positive. I know I'm very lucky to have the support I do have around me, but obviously it's such a different situation that no one knows how to approach.
