Supporting you through the current media coverage
Good morning all, As we’ve seen unfold in discussions over the past week in the online network, many of you have been impacted by the media surrounding a celebrity’s choices during their own cancer treatment. This is not the first time, nor the last, that a high-profile person will make statements that can affect those of us who have experienced breast cancer diagnosis and treatment. Some of the things you may be feeling at the moment include: - Feelings of doubt, fear, or shame in managing your own breast cancer experience. - A fear of recurrence or progression, which might lead you to question your evidence-based treatment plans. - Being at risk of ‘emotion-based’ decision making when it comes to treatment pathways or second-guessing any of your evidence-based treatment protocols. We are aware that some people may need support at the moment, and we wanted to take the opportunity to reach out. Our priority at BCNA will always be to ensure you feel empowered, informed, and secure in the choices you make with your own treating team following a breast cancer diagnosis. Clinical Psychologist, Dr Charlotte Tottman and BCNA CEO, Kirsten Pilatti filmed a member-focused discussion around recognising, managing and dealing with emotions or triggers that may have been raised by this recent coverage. It includes qualified advice and strategies on how to manage what you may be feeling. The intention is not to provoke unwanted emotions, but to provide information which may assist your wellbeing at this time. Proceed only if you are comfortable with potentially sensitive topics around breast cancer. https://www.youtube.com/watch?v=Eb6hKrI1rhs Accessing quality, evidence-based information to guide treatment decisions is crucial when dealing with a breast cancer diagnosis. At BCNA, we ensure that individuals diagnosed with breast cancer receive information that is grounded in the best available clinical evidence. In addition to the Online Network, BCNA can help you to cut through the noise by providing access to reliable information and resources at bcna.org.au, as well as support via our free Helpline on 1800 500 258.EMOJI ('Reactions')
Hello members, In a recent unrelated discussion thread there has been a clear dissatisfaction expressed with the current emojis (aka reactions) available or not available to you when communicating in the online network. In relation to the 'hug' emoji, this was an organisational decision to include the hug reaction as it is a popular emoji with the members and BCNA has confirmed it is staying. Unfortunately we are limited within this platform and cannot create 'new' emojis but can replace existing ones (The 'flag' and 'quote' are not reactions that can be used). We have found an interim solution to enable the smiley face reaction to be 'awesome' and hope this will satisfy those that wish to have this option back as well. If you do not like a particular emoji than you do not have to use it and if you have other feature suggestions send the moderators a private message. Final thoughts and gentle reminder: To keep this space welcoming and supportive to members, it is important that we are all respectful. When we are online, we have to work harder because there is no body language, facial expressions and tone of voice to help us interpret what people are saying to us. We remind you to please be respectful of other members and also the staff at BCNA. Many thanks.
Watch this space!
We’ve been listening to your feedback and we’re excited to announce that the Online Network will be moving to a new platform in early 2025! This has been designed to better serve your needs. This will mean you will only need one login, one password for the Online Network and all our resources. We are committed to improving your experience, and we can’t wait to share these new features with you in the New Year. Keep an eye out for regular updates in early 2025.BCNA statement about Elle Macpherson's treatment decisions
Breast Cancer Network Australia (BCNA) would like to address recent media coverage regarding Elle Macpherson's statements about her personal approach to breast cancer treatment. Elle Macpherson's choices highlight the deeply personal nature of treatment decisions following a breast cancer diagnosis. BCNA respects Elle Macpherson's right to share her experience and acknowledges that every breast cancer experience is unique. All individual breast cancer diagnoses and experiences are different. BCNA recognises Elle Macpherson's right to discuss her own breast cancer experience through her own lens and support her right to make the choices she feels are best for her circumstances. It’s important to recognise that everyone’s diagnosis and every treatment path is unique and shaped around their individual diagnosis. When public figures discuss their health experiences, it brings valuable attention to important issues. However, BCNA believes it's crucial that these discussions do not lead to doubt or fear among others facing similar diagnoses. Our priority is to ensure that people feel empowered and informed in the choices they make following a breast cancer diagnosis. BCNA advocates for the importance of accessing trusted, evidence-based information to guide treatment decisions. While a healthy lifestyle, including good nutrition, exercise, and mental well-being, plays a role in cancer care, we emphasise the importance of consulting healthcare professionals and relying on the expertise of your treatment team to make informed decisions for you. BCNA's role is to cut through the noise and help people navigate what is a very stressful time in their lives. We provide free information and resources to those with a breast cancer diagnosis at a time they need it most, along with support via our free Helpline. For more information or support, please visit our Information and Resources Hub or call our Helpline at 1800 268 002.
March content round-up
Hi members, My name is Amelia and I work in the Member Content and Engagement team at BCNA. At the end of each month, I will do a round-up of all the podcasts, events and resources we have launched so you all have them in the one place. If you have any feedback on the content or have any ideas of topics you’d like covered, please feel free to always send me an email acox@bcna.org.au. Enjoy! Thank you, Amelia Podcast: In conversation with Shannane and Kate: Under 40 and living with breast cancer Joining us for this In Conversation episode is Shananne and Kate. Kate was diagnosed with stage 3 triple negative breast cancer when she was 26 years old and 28 weeks pregnant. Shananne was diagnosed with hormone receptor positive breast cancer in 2018 when she was 37 years old and pregnant with her third child. During this candid conversation between Shananne and Kate we’ll hear about their reaction on being told they had breast cancer, the treatment they received, the challenges they faced and continue to face, coping strategies they used and advice they have for other young women. Listen here. LGBTIQ+ experiences of cancer and cancer care: Joining us for this episode of Upfront is Jane Ussher and Natalie Halse. Jane is a Professor of Women’s Health Psychology in the Translations Health Research Institute at Western Sydney University and is the lead researcher in the recent ‘Out with Cancer’ Study. Natalie is a registered nurse and a BCNA consumer representative with lived breast cancer experience of a LGBTIQ+ person. We hear about some of the key findings of the ‘Out with Cancer’ study and its key learnings, discuss disclosure including how to do it safely, the positive benefits, and why some people are reluctant and discover what to do if you experience a negative reaction from a health care professional and the support available. Listen here. Through a rainbow lens – Navigating breast cancer as an LGBTIQ+ couple: Joining us for this episode is Mel Krollig and her partner Riki Owens-Bennett. Mel was diagnosed with breast cancer in 2016 at the age of 36 and has had fertility treatment, a single mastectomy, chemotherapy, and radiotherapy. Riki works as a community worker for the LGBTIQ+ communities in South Australia and has been by Mel’s side during her breast cancer journey. Riki and Mel have been together for 19 years, and despite a few COVID-19 related delays, married in 2021 in a celebration surrounded by family and friends. We’ll hear about Mel’s experience of breast cancer, how Riki supported her, the challenges the couple faced together and how they navigated the system as a LGBTIQ+ couple. Listen here. Webcast: Just diagnosed in 2022, what’s next? In this webcast, we heard from specialist breast cancer surgeon Mr Sunil (Sunny) Jassal, breast care nurse Meg McDonald and BCNA Consumer Faye Louey. Sunny is a director and founding member of Melbourne Breast and Endocrine Surgeons and works with leading radiologists, pathologists, oncologists and plastic surgeons. Meg works at Melbourne Breast and Endocrine Surgeons where she is an integral part of the breast cancer care team. Faye was diagnosed with early breast cancer in 2019 and discussed how she took control of her diagnosis after the initial shock. Watch here. New resources: BCNA is thrilled to have launched new content to support First Peoples women and people from LGBTIQ+ communities who are diagnosed with breast cancer. These two projects, undertaken with support from Cancer Australia, have enabled BCNA to expand our resources for people from these marginalised groups to help them feel empowered to make decisions about their treatment and care and to help them through their breast cancer journey. The information was developed with significant input from consumers through BCNA’s First Peoples Advisory Group and LGBTIQ+ Advisory Group. Read more about the new LGBTIQ+ and First Peoples resources via the BCNA website.Friday Update 10th February 2023
Hello members and welcome to the latest Friday update, In this update I share several topics and insights into the upcoming March edition of The Beacon. I also share information about the Carman's Fun Run, as this date is coming up fast and I wouldn't want you to miss out if you live in the Melbourne area. Enjoy! Community highlights January activity In January the Online Network had 85 new discussions; 548 new comments and 15,293 visits to the community Popular forum discussions You may have missed some of Online Network discussions that have been most active in January: Single mastectomy with immediate DIEP reconstruction Mastectomy Decisions on surgery Bone Scan along with 3yr mammogram and ultrasound 5 years today since my surgery .... Posts by 'Category Name' January 2023 Community News BCNA My Journey Updates This week we had three articles related to COVID-19 which have been significantly reviewed and updated. Reflecting the recent government announcement regarding access to booster shot from February 20th 2023. Refer to below links COVID-19 Information COVID-19 vaccinations COVID-19 oral antiviral treatments BCNA - Improve access to breast cancer care and support in NSW More than 6,400 people in NSW are expected to be diagnosed with breast cancer in 2023. BCNA is calling on all those contesting the NSW state election to show their commitment to cancer care and support for people affected by breast cancer. Waitlists for elective surgeries have blown out across Australia. In our 2022 federal Election Manifesto we called for greater transparency of waiting times, especially for those waiting for a breast reconstruction following breast cancer. In NSW, the 2023 state election is further opportunity to state governments to commit to invest to clear the current elective surgery backlog, especially in rural and regional areas. Read BCNA's federal election manifesto via the link https://www.bcna.org.au/media/8473/bcna_election_manifesto_fy22_v3.pdf BCNA - Latest information regarding Perjeta (pertuzumab) We have had a few enquiries to the Helpline team regarding access to Perjeta for early breast cancer diagnosis, therefore the below information may be helpful to assist those who are unsure of the most current information (As at February 2023). BCNA understands that Perjeta (pertuzumab) is currently subsidised on the Pharmaceutical Benefits Scheme (PBS) for metastatic breast cancer only. It was submitted for consideration by the Pharmaceutical Benefits Advisory Committee (PBAC) for early breast cancer twice, in 2018 and 2020, however was unsuccessful in both instances. BCNA submitted a consumer comment to the PBAC in 2020 in support of subsidising Perjeta (pertuzumab) in combination with trasutuzumab and chemotherapy for the adjuvant (post-surgery) treatment of the Human epidermal growth factor receptor-2 positive (HER2-positive), lymph node positive early breast cancer. We also noted in this submission the emerging clinical evidence of the effectiveness of neo-adjuvant (pre-surgery) Perjeta (pertuzumub) for HER2-positive early breast cancer and advocated for it to be considered for subsidy in this setting as well. BCNA understand that Roche currently runs a Patient Access Program for Perjeta (pertuzumab) in the neo-adjuvant setting in which the out-of-pocket costs are shared by the patient and Roche whilst this treatment is not subsidised on the PBS. BCNA continues to advocate to both the pharmaceutical industry and to the government for improved access to subsidised treatments to alleviate the financial burden of a breast cancer diagnosis and to improve equity to access to optimal care for all Australians. Speak with your medical oncologist if you would like further clarification about the program. You can also read further details via BCNA's My Journey article https://myjourney.org.au/article/2201 The Beacon - March Edition Here is a sneak peak into the upcoming topics and information in the latest Beacon edition: Ask the expert: Support needs after a diagnosis - Dr. Charlotte Tottman answers questions including: What is support? What does it look like in a breast cancer experience? Why is support different for everyone? What can be helpful if you feel disappointed about the support you've received? What helps when you don't have much support - Three members share their real experiences of having not much support during and beyond their breast cancer diagnosis. Then and now: How support has changed - Member Glenda shares her story, showing a comparison of her first breast cancer diagnosis in the 90's and her recurrence in 2022. Touching on elements such as access to information, breast care nurses, financial support and ongoing support Breast cancer researchers embracing the voice of BCNA Consumer Representatives - The story looks into 'Project: Finding My Way - Advanced study - randomised control trial (RCT)' and 'Project: EMPOWER-SMS Study'. Carman's Fun Run Join us for the Carman's Fun Run on the 19th February 2023. Held at the picturesque Elsternwick Park (located at the doorstep of the popular Elwood shops), be part of our inclusive and supportive community to inspire participants along their journey to a half-marathon, 10k or 5k. With a family friendly event site Carman's Fun Run will be an enjoyable day out for all participants. Click the link for more details on how to register https://www.bcna.org.au/events/2023/carmans-fun-run-2023/ or if you would like to volunteer https://bcna.live/CarmansFunRun-Volunteering Forums / Webcasts WEBCAST Managing Stress and Improving Wellbeing with Mindfulness and Meditation - Wed 15 February 7:00-8:00pm AEDT Join mindfulness expert Prof. Craig Hassed OAM; Medical Practitioner and Associate Prof. Dr Emma Warnecke and BCNA member and mindfulness meditation teacher Iris Bar, as they discuss the benefits of mindfulness and meditation to help reduce stress during and beyond a breast cancer experience. Click on the link to register https://bcna.live/MindfulnessWebcast Port Lincoln Information Forum - Tues 7 March 9:00am - 3:00pm ACDT Join us at Port Lincoln hotel to hear a range of topics and connect with those in your local community. Guest speakers will include clinical psychologist Dr Charlotte Tottman; McGrath Breast Care Nurse Michelle Lydeamore and Lymphoedema Physiotherapist Kristy Roeger. Click on the link to register https://bcna.live/PortLincolnForum Books / TV Series / Movies / Documentaries I shared this YouTube video in the 'Living with metastatic breast cancer' private group and thought I would share with the wider forum community. You may have already seen the interview last week with MP Peta Murphy, who shared her breast cancer journey https://youtu.be/97RyknJv5FU Hope you have found this update useful. Please feel free to share your ideas for content that you would like to see in future updates. If you have any concerns while using the Online Network, please direct message (How do I send a private message?) one of the moderators below - @Carissa_BCNA @Jenny_BCNA @Pat_BCNA @Mez_BCNA If you need to speak with one of our friendly Helpline staff over the phone, please call 1800 500 258 (Mon-Fri 9:00am-5:00pm AEDT) or email helpline@bcna.org.au Warm regards, The mod team - Mez, Carissa, Jenny, & Pat "A kind gesture can reach a wound that only compassion can heal." - Steve MaraboliFriday Update 21st January 2022
Friday Update 21st January 2022 Hello members, Welcome to the first Friday update of 2022! First, I would like to extend my thankyou to our wonderful members who kept me in the loop with items that needed attention over the office closure period, as we didn’t have our usual fulltime moderating schedule. It was extremely helpful - THANKYOU. There has been quite a few important updates in relation to COVID-19 vaccinations and associated impacts in the health system that I will share in this update, as well some welcoming news in relation to Telehealth. Community highlights Looking back on 2021 Online Network activity The below data is more than numbers; these are valuable conversations, support and connections: · 1058 discussions · 10,486 comments · 509 contributors · 3,610 active users · 914,450 page views TOP 5 Popular forum discussions in 2021 Members new and old may have missed some of the forum discussions that have received the most comments in 2021: 1. Friday Funnies 2. Wise words .... 3. COVID 19 jab 4. Creative Corner! 5. Our Gardens (Check out the beautiful lilium shared by @Locksley) Community News BCNA 18 Jan 2022 – Telehealth Consultations BCNA welcomes the Australian Government’s announcement to reinstate MBS items for Telehealth consultations made via telephone with cancer specialists. We know this will help to reduce exposure and risk to the community during the ongoing pandemic and allow for flexibility in how Telehealth is delivered. BCNA, the Clinical Oncology Society of Australia and other health professional groups strongly advocated for telephone Telehealth items to remain on the MBS due to the rapid spread of the Omicron variant. BCNA has the latest in how this may impact you go to https://buff.ly/3mxBuVy BCNA 13 Jan 2022- COVID-19 booster vaccine Those who received a third COVID-19 vaccine due to being immunocompromised or on active cancer treatment are now eligible for a booster vaccine four months after their third shot. Visit My Journey or call BCNA’s helpline for more information about COVID-19 and breast cancer. My Journey: https://buff.ly/35NnMrp RACGP - A guide, action plan and symptoms diary for patients The RACGP has developed a guide to assists COVID-19 positive patients to self-manage their symptoms at home, and is the patient complement to the GP resource Home-care guidelines for patients with COVID-19. CLICK HERE for further details WidgitHealth Widget Health provides free visual images about healthcare. The images can be used for communication or as part of a social script to prepare for a hospital visit or medical procedure for people who may have a communication need or disability. CLICK HERE for further details Dine Pink to help BCNA Now, more than ever, we understand the importance of human connection and we can finally celebrate our friendships and family by connecting in person. We encourage you to Dine Pink this summer while raising vital funds to support BCNA. You can help ensure people affected by breast cancer stay connected to their support networks by connecting them to resources and services such as the BCNA Helpline, My Journey app, local support groups, and BCNA’s online network. CLICK HERE to find out more Podcast (Have you checked out Charlotte Tottman’s podcast?) ‘What You Don’t Know Until You Do’ – EP3 The Showing Up and Letting Down: Surprises and Disappointments in Relationships When unexpected family or friends show up to support you through your breast cancer diagnosis it can make you feel a great sense of comfort and value. However, when the people we love step back when we need them most, it can leave you feeling a great sense of disappointment. In episode 3 of What You Don’t Know Until You Do, Clinical Psychologist Dr Charlotte Tottman discusses how best to respond to disappointment, recalibrate expectations, and how to clearly communicate your emotional and practical needs to those around you. Listen to episode 3 via the link: https://www.bcna.org.au/.../charlotte-tottman-podcast.../ Books / Movies/ TV Series/ Documentaries This one is from the My Journey Library and I have watched the intro and first video of the series. Some of you may be interested in exploring further: Emotional Health During and After Cancer Treatment video series - Julie Bolton (Counsellor and breast cancer survivor) (This series of six videos explains the impact of a breast cancer diagnosis and treatment on our emotional health and provides simple but effective strategies to help improve your quality of life. The first video is currently available free of charge, and then there is a charge of $49.99 for unlimited access to the full series. You can watch a three minute introduction to the series on Julie's website - follow the link above) Hope you enjoyed the content this week and in the meantime, if you have any concerns while online, please contact one of the moderators - @Jenny_BCNA @Carissa_BCNA @Anna_BCNA @Pat_BCNA @MichelleP_BCNA @Mez_BCNA If you need to speak with someone regarding your concern, please call 1800 500 258 alternatively, you can email contact@bcna.org.au Take care, The mod team – Mez, Carissa, Jenny, Anna, Pat & Michelle “Feelings are just visitors, let them come and go”- MoojiFriday Update 3rd Dec 2021
Friday update 3rd December 2021 Welcome to December members! A very warm welcome to all our new members who have joined us in November and to our existing members who continue to provide support to others navigating their breast cancer diagnosis or who are seeking support for family/friends. A reminder for newbies: please check out Charlotte Tottman’s Podcast mini-series ‘What you don’t know until you do’ https://www.bcna.org.au/understanding-breast-cancer/resources/podcasts/ Dr. Charlotte lays out her lived experience, provide explanations of psychological triggers and responses, and practical strategies that may help someone on their own cancer journey. Community highlights November Online Network activity November saw the Online Network receive a total number of 14,485 visitors to the community: 93 discussions and 875 comments. Popular forum discussions Members new and old may have missed some of the forum discussions that have received the most comments: 1. Friday Funnies credit @arpie 2. Christmas Funnies ....... put them up here for a laugh! 3. Chemo or not chemo 4. 4th Melanoma found after skin check Community News BCNA NEWS 22 Nov 2021 - IMPORTANT- Beware. Suspicious fundraising Over the last several weeks we have received queries from people within our network across SA, WA and NT regarding this issue. CLICK HERE for full details. BCNA’s Symptom Tracker If you haven’t explored the My Journey Symptom tracker, this tool can help you keep a record of the physical and emotional symptoms and side effects from your treatment so that you can feel confident to accurately share the ups and downs of your experience with your treating team and people close to you. Remember, to chat with your treating team if you notice new symptoms, or if your symptoms get too much for you. You can find out more about BCNA’s Symptom Tracker or use it by downloading BCNA’s My Journey app. For more information visit https://buff.ly/3CnfWTb Have you ordered the all new BCNA Christmas Baubles? This year decorate your tree with our 2 pack handcrafted Christmas baubles in support, in celebration or in memory of someone you love. (Even just for you) Our new 2021 design features a series of Pink Ladies, Blue Man and White Lady to represent the women and men affected by breast cancer and those that we have lost to the disease. For only $15 the 2 pack of baubles is packaged in an opaque gift box and each unique order on the BCNA online store will receive a free gift tag and sheet of A3 Christmas wrap, while stocks last. A perfect gift to show you care, or simply to adorn your own tree or the trees of your family. Order your baubles today at: https://pinksportsday.bcna.org.au Cancer Council – Your Guide to best cancer care Cancer Council have finalised the second edition of the consumer guides for the Optimal Care Pathway suite of resources. The guides are designed to help newly diagnosed patients to make sense of what should happen; helping with what questions to ask your medical team to ensure you receive the best care (Cancer Council 2021). Please find the breast cancer consumer guide (available in seven languages) via the link Guides to best cancer care | Cancer Council Podcast Upfront About Breast Cancer Podcast ‘Advanced Care Planning’ – Taking Control of Your Future Living with metastatic breast cancer often means you need to make decisions about your treatment and care. As well as working with your treating team to work out decisions surrounding your current care, it’s also good to think ahead and talk about the care you may want in the future, if you are unable to communicate your preferences for care yourself. In this episode we’re joined by Dr Sonia Fullerton. Sonia is a consultant in palliative medicine who assists in patient centred decision-making and advance care plans. Listen via this link or wherever you get your podcasts: https://buff.ly/3FGumQs As some of our Online Network members have pointed out: Advanced Care Planning is an important consideration not just reserved for someone with an illness, as it is the process of thinking about who would speak on your behalf in the event that you are unable to make those decisions in the future. Webcast The Role of Radiotherapy in the Treatment of DCIS and Early Breast Cancer -REGISTER NOW! BCNA are holding this webcast on Thursday 9 December, 7:00 pm – 8:00 pm AEDT. The webcast will explore the use for radiotherapy including the benefits for the treatment of DCIS and early breast cancer, current and emerging techniques of radiotherapy delivery, the planning process and the factors that influence delivery, side effects and ways to manage them, follow up care and the costs associated with treatment. Register now via the link below and comment below the questions you would like answered on radiotherapy. https://bit.ly/3p8edwn Books / Movies/ TV Series/ Documentaries Well its time to break out the Christmas movies (If you are a fan like me). One of the all-time classics with James Stewart and Donna Reed ‘It’s a Wonderful Life’ is a must watch every year. Hope you enjoyed the content this week and in the meantime, if you have any concerns while online, please contact one of the moderators - @Jenny_BCNA @Carissa_BCNA @Anna_BCNA @Pat_BCNA @MichelleP_BCNA @Mez_BCNA If you need to speak with someone regarding your concern, please call 1800 500 258 alternatively, you can email contact@bcna.org.au Take care, The mod team – Mez, Carissa, Jenny, Anna, Pat & Michelle “You are the first time you’ve ever happened; YOU and NOW are a unique occurrence of which you are the most reliable measure of all the possibilities.” – Will SmithEvery story counts
3,863 Queenslanders living with metastatic breast cancer have been counted, ending years of invisibility for this community and making sure they are seen and recognised in the health system for the first time. When we recognise the real people behind the data, we can create positive change for all, and help shape better care, support and research for Australians affected by breast cancer. Now is the time for other state and territories to act, and make sure every Australian living with metastatic breast cancer is seen, heard, and counted. Read more via the link Landmark step for women with metastatic breast cancer in QueenslandBreast cancer treatment researcher awarded Prime Minister’s Prize for Science
The Peter MacCallum Cancer Centre’s Professor Sherene Loi has been awarded a Prime Minister’s Prize for Science for her research into innovative treatments to improve the survival of breast cancer patients. Click on the below link for the full coverage: https://www.skynews.com.au/lifestyle/health/breast-cancer-treatment-researcher-awarded-prime-ministers-prize-for-science/video/988424ceb2b4596fd15ac51d67584962
