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Astrida_BCNA
Community Manager
Joined 1 year ago
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🌟Join the LeanOn Lymphoedema Self-Management Study
About this opportunity Have you been diagnosed with breast cancer and are currently living with, or at risk of developing, breast cancer-related lymphoedema? Researchers from Flinders University are inviting people to participate in the LeanOn Lymphoedema Self-Management Study, which is evaluating a new online platform designed to support self-care and improve quality of life for people affected by lymphoedema. Your participation will help researchers understand how well the platform supports people in managing their symptoms and navigating their lymphoedema care. What you'll do: If you choose to take part, you will: Access the LeanOn online platform. Explore evidence-based information and self-care resources. Receive a personalised care plan. Use tools to monitor symptoms and track your progress. Complete short surveys at the beginning of the study, and again at 6 and 12 weeks. Optionally participate in a feedback interview. Who can take part? 👥 You may be eligible if you: Have a history of breast cancer. Are currently living with, or at risk of developing, breast cancer-related lymphoedema. Are aged 18 years or older. Can read and understand English. Why get involved? By participating, you'll have the opportunity to: Access a new self-management support platform. Build confidence in managing your lymphoedema. Help improve resources and support available to people affected by breast cancer-related lymphoedema. Contribute to important research that may benefit others in the future. Interested? 📝 To learn more, read the Participant Information Sheet and register your interest here: If you have any questions, please contact the research team: Navaz Naghavi – [email protected] | 0433 805 014 Katia Ferrar – [email protected] | 0411 234 885💛 Help Shape a New Text Message Support Program for People Living with Metastatic Breast Cancer
We know that living with metastatic breast cancer brings unique challenges, and having access to the right support at the right time can make a real difference. Researchers from The University of Sydney, in partnership with Breast Cancer Network Australia, are seeking feedback from people living with metastatic breast cancer to help adapt the EMPOWER-SMS text message support program so it better meets the needs of this community. The EMPOWER-SMS program was originally developed for people recovering from early breast cancer and was found to be helpful, motivating and supportive. This project aims to ensure the program is relevant and meaningful for people living with metastatic breast cancer. What is involved? 💛 Complete a short online survey reviewing sample text messages 💛 Share your feedback on the content and support provided 💛 Survey completion time is approximately 15-20 minutes Your feedback will directly contribute to the co-design of a support program for people living with metastatic breast cancer. Before you decide 📄 Please take a moment to review the attached Participant Information Sheet, which provides further details about the study, what participation involves, and how your information will be managed. Interested in participating? 🔗 Complete the survey here: https://redcap.sydney.edu.au/surveys/?s=KTCAYNM83FTPY37L Ethics approval ✅ This study has received ethics approval from the The University of Sydney (Reference: HE000885). 💛 Thank you for helping ensure the voices and experiences of people living with metastatic breast cancer remain at the centre of research and support programs.We want to hear from you to improve our Diversity, Equity and Inclusion (DEI) Strategy
Breast Cancer Network Australia (BCNA) is on a journey to better understand and serve everyone affected by breast cancer in this country – and we know we have more work to do. We heard through our Member Experience Survey that we were not doing enough to reach some populations and communities – and when we did, the experience of these people in accessing our information and support didn’t always feel culturally relevant and inclusive. Right now, we are developing a Diversity, Equity and Inclusion (DEI) Strategy. This strategy will shape how we design our services, how we communicate, who we reach, and how we show up for our members. We know that this strategy must be designed with the voices of diverse lived experience. That is why we are inviting you to take part in a consumer consultation session. These sessions are being facilitated by MindTribes, a specialist diversity and inclusion consultancy with deep experience working with culturally diverse, First Nations, LGBTIQ+, and other communities navigating complex health systems. We recognise that many people hold multiple identities and experiences. You are welcome to express your interest in participating in more than one consultation group when registering, however you will only be selected for one session. What the session involves: The session will run for approximately 60 minutes online. You will join a small group of up to 20 people with shared backgrounds or experiences. The facilitator will guide the conversation in two parts: Lived experience sharing – if you would like to, you can reflect on your own experiences of accessing BCNA services, breast cancer support more broadly, or navigating the health system as someone from your community. You are always in control of what and how much you share. Guided consultation – the facilitator will also ask questions about what would make services like BCNA’s more accessible, more respectful, and more responsive to your community’s needs. Discussions may include experiences of diagnosis, treatment, living with metastatic disease, survivorship, caring responsibilities, accessing support, and navigating the health system. People living with breast cancer, including metastatic breast cancer, people previously diagnosed with breast cancer, carers, family members and supporters are all welcome to participate. Representatives from community organisations relevant to each priority population group may also attend for part of the session to provide input on sector activities and actions that are currently underway and to help improve the depth of consultation. How your safety is protected: We understand that sharing personal experiences – particularly around health, identity, or cultural background – requires trust. These sessions have been carefully designed to be safe, respectful, and culturally responsive: Sessions are facilitated by experienced external consultants from MindTribes, who are trained in culturally safe, trauma–informed and inclusive practice. No names, identifying details, or personal health information will be recorded. Everything shared in the session is confidential. Insights are collected as de–identified themes only. You can withdraw at any time, for any reason. There are no right or wrong answers. Your experiences and perspectives are valid exactly as they are. For some communities, talking about cancer, health, or personal experience in a group setting may feel unfamiliar. MindTribes’ process involves encouraging each voice and contribution with care and safety by creating boundaries, good pacing and redirection techniques that are trauma–informed. We know that in many communities, talking openly about cancer – or about personal health and vulnerability – is not always easy or familiar. To give you confidence, our facilitators are from Culturally and Linguistically Diverse (CALD) communities have 10–20 years of listening and consultation experience with racially and ethnically diverse communities. How to join: Sessions run between the end of July and early August. To register, please complete this form by July 21st, 2026: BCNA DEI Consutation Form Can't attend or would prefer to contribute another way? We understand that group discussions may not feel comfortable or accessible for everyone. Some people may prefer to share their experiences privately, have concerns about confidentiality, or be unable to attend one of the scheduled sessions. If you would still like to contribute to BCNA's Diversity, Equity and Inclusion (DEI) Strategy, we invite you to share your feedback through a separate online form. Responses will be reviewed alongside consultation insights to help inform the strategy. Out of session consultation Whether you participate in a consultation session, provide written feedback, or both, we welcome and value your perspective. If you have questions before registering, or if you’d prefer to speak with someone first, please reach out to us at: [email protected] We are genuinely grateful for your time, and we are committed to making sure your voice shapes what BCNA does next.Help shape inclusion at BCNA 🗣️
Your voice can enhance our Diversity, Equity and Inclusion (DEI) Strategy At BCNA, we know that a breast cancer diagnosis is shaped by culture, identity, language, geography, and the systems we all navigate. We heard through our Member Experience Survey that we were not doing enough to reach some populations and communities, and when we did, the experience of these people in accessing out information and support didn’t always feel culturally relevant and inclusive That is why we are developing a Diversity, Equity and Inclusion (DEI) Strategy – a commitment to making BCNA more equitable, more accessible, and more representative of those we serve. We are developing this strategy to help ensure that everyone affected by breast cancer can access the support, information and care they need. This work will help BCNA improve how we include and support people from a wide range of backgrounds and experiences. We know that people’s experiences of breast cancer are not the same. Often, factors like culture, language, gender, location, disability and finances overlap and create additional challenges. This is what we mean by “intersectionality”. To make sure the strategy reflects real experiences, we are listening directly to people through consultations. Your insights will help identify what is working, what is not, and what needs to change to make BCNA’s services more inclusive and accessible for everyone. BCNA is working with MindTribes – a specialist diversity, equity and inclusion consultancy – to run a series of confidential consultation sessions with our staff, consumers/members, advisory groups, and community representatives. These sessions will help us understand where we are doing well, where there are gaps, and what needs to change. The insights from these sessions will directly shape the strategy we develop and the actions that follow. We are committed to making these sessions safe spaces – led by experienced external facilitators, confidential, and designed to respect every person’s experience and identity. You are always in control of what and how much you share. Further information about how to participate will be shared with you shortly. In the meantime, we encourage you to sit with this question: what needs to change at BCNA for the organisation to be more representative and inclusive? We are looking forward to hearing your thoughts and experiences. We will treat them with respect and confidentiality.Re: Tamoxifen and haemorrhoids.
Hi Spursy as we wait for others to respond with their experience, I just wanted to reassure you that you’ve done the right thing in seeing your doctor. It makes sense that this would feel a bit worrying, especially when something new comes up while you’re on Tamoxifen. I hope the below info helps, and please reach out at any time as you navigate this. Article - Side effects of hormone-blocking therapy Webcast - Managing side effects of hormone blocking treatment Forum Thread - Tamoxifen.. Hopefully, the treatment helps settle things, but do keep your doctor in the loop if it continues or changes. ❤️👋 Monday Mingle Meet & Greet - Welcome New Members May 18-24 👋
Welcome to members who recently joined our online community in the past week! We hope you are connecting with others and finding support. VintageKat birdsong Peggy40 Louise1957 Pammigirl Hjpfg Bianca1 LissyBee Ljk This forum is a supportive space where you can connect with generous members who provide meaningful support to each other. Share as much or as little as you feel comfortable with. Explore our various groups for greater peer-to-peer support. Helpful Links to Get You Started: How to start a discussion About BCNA's Online Network Check out our private groups! BCNA Online Network Groups Community Guidelines New breast cancer diagnosis? Read Living with DCIS, LCIS or early breast cancer Listen to BCNA's podcasts: Upfront About Breast Cancer: Just Diagnosed - What's Next? What You Don't Know Until You Do Metastatic Breast Cancer Diagnosis? Watch Just diagnosed with metastatic breast cancer - what's next? Get the Most Out of Our Community: Our long-time members (and newbies too!) are a wealth of information. Don't hesitate to post your questions. You can also update your profile with details about yourself, such as your breast cancer experience and where you live (e.g., Sydney, Melbourne, Regional Victoria) for more targeted responses. You may like to check some of our more light-hearted discussion threads while you are here: Friday Funnies Wise words Creative Corner! Our Gardens Need Help? Message our community manager Christina_BCNA BCNA_Mod or one of our other moderators: Daina_BCNA Mez_BCNA Astrida_BCNA Risha_BCNA Denise_BCNA. Please Note: Please be aware that your posts and comments in the public discussions and public groups can be found and read by anyone, including those who are not members of the online network. This means that what you share in a public discussion or public group may be read by a wider audience, please consider this when sharing sensitive or personal details. The Online Network is not moderated by staff/volunteers on weekends. For urgent queries, contact the Helpline Team via email at [email protected] or phone 1800 500 258, Monday to Friday, 9:00am-5:00pm AEDTRe: Chest Cancer Breast Cancer
Hi SC , Thank you for taking the time to share your perspective. Breast cancer affects people of all genders, and we recognise that each person’s experience can be different and, at times, very challenging. We also know there is more to learn and improve in how support and information reaches different communities, and this is something we continue to work on. BCNA provides a range of information and support specifically for men affected by breast cancer. You can access these resources here: Breast Cancer in men Personal stories of men with breast cancer Health information for men with breast cancer Podcast episode: Men get breast cancer too Webcast: Men and breast cancer If you’d like help exploring any of these or want to talk through what you’re experiencing, please feel free to reach out and call 1800 500 258 or email mailto:[email protected] 💚👋 Monday Mingle Meet & Greet - Welcome New Members March 9-15 👋
Welcome to members who recently joined our online community in the past week! We hope you are connecting with others and finding support. Elliebug MonicaMaree blushplastic Janine2 JadeN MickeyMoo ddale Wade Nels Cloe87 J_o_C SliFi belbay UKNurse VioletB33 kcw Patchworkezza MariaL Gordon2026 hk21 Pai91 Clio Dominica Lollipop sg Lynp18 This forum is a supportive space where you can connect with generous members who provide meaningful support to each other. Share as much or as little as you feel comfortable with. Explore our various groups for greater peer-to-peer support. Helpful Links to Get You Started: How to start a discussion About BCNA's Online Network Check out our private groups! BCNA Online Network Groups Community Guidelines New breast cancer diagnosis? Read Living with DCIS, LCIS or early breast cancer Listen to BCNA's podcasts: Upfront About Breast Cancer: Just Diagnosed - What's Next? What You Don't Know Until You Do Metastatic Breast Cancer Diagnosis? Watch Just diagnosed with metastatic breast cancer - what's next? Get the Most Out of Our Community: Our long-time members (and newbies too!) are a wealth of information. Don't hesitate to post your questions. You can also update your profile with details about yourself, such as your breast cancer experience and where you live (e.g., Sydney, Melbourne, Regional Victoria) for more targeted responses. You may like to check some of our more light-hearted discussion threads while you are here: Friday Funnies Wise words Creative Corner! Our Gardens Need Help? Message our community manager Christina_BCNA BCNA_Mod or one of our other moderators: Daina_BCNA Mez_BCNA Astrida_BCNA Risha_BCNA Denise_BCNA. Please Note: Please be aware that your posts and comments in the public discussions and public groups can be found and read by anyone, including those who are not members of the online network. This means that what you share in a public discussion or public group may be read by a wider audience, please consider this when sharing sensitive or personal details. The Online Network is not moderated by staff/volunteers on weekends. For urgent queries, contact the Helpline Team via email at [email protected] or phone 1800 500 258, Monday to Friday, 9:00am-5:00pm AEDT.Let’s Get to Know Each Other – What Languages Do We Speak? 🌍💬
Our CALD community is incredibly diverse, and we want to make sure the content and information we share genuinely support everyone here. One way we can do that is by understanding the different languages and cultural backgrounds represented in our group. So, we’d love to hear from you: What languages do you speak or understand? This could be your first language, a language you learned later in life, or even one you don’t use as often anymore. I’ll go first: I speak Latvian, and I know a little bit of German (although I’m slowly losing my touch!). Sharing your languages helps us tailor information, resources, and support so they’re as helpful and accessible as possible. 💗🌏 There’s absolutely no pressure — only share what you're comfortable with.👋 Monday Mingle Meet & Greet - Welcome New Members Feb 9-15👋
Welcome to members who recently joined our online community in the past week! We hope you are connecting with others and finding support. MelK MelMc GC003 Soda56 miche Catta Moonhirl chrissyd3 Flashturtle YvetteM Fynnlove Kmec74 kmf Lizzles Michelle_2026 Jodi1 CaptnK Dorothy80 abombeta kerriefrances Betty123 CathyT Katiepea CorinneWhy Flea77 ABhog This forum is a supportive space where you can connect with generous members who provide meaningful support to each other. Share as much or as little as you feel comfortable with. Explore our various groups for greater peer-to-peer support. Helpful Links to Get You Started: How to start a discussion About BCNA's Online Network Check out our private groups! BCNA Online Network Groups Community Guidelines New breast cancer diagnosis? Read Living with DCIS, LCIS or early breast cancer Listen to BCNA's podcasts: Upfront About Breast Cancer: Just Diagnosed - What's Next? What You Don't Know Until You Do Metastatic Breast Cancer Diagnosis? Watch Just diagnosed with metastatic breast cancer - what's next? Get the Most Out of Our Community: Our long-time members (and newbies too!) are a wealth of information. Don't hesitate to post your questions. You can also update your profile with details about yourself, such as your breast cancer experience and where you live (e.g., Sydney, Melbourne, Regional Victoria) for more targeted responses. You may like to check some of our more light-hearted discussion threads while you are here: Friday Funnies Wise words Creative Corner! Our Gardens Need Help? Message our community manager, Christina_BCNA BCNA_Mod or one of our other moderators: Daina_BCNA Mez_BCNA Astrida_BCNA Risha_BCNA Denise_BCNA. Please Note: Please be aware that your posts and comments in the public discussions and public groups can be found and read by anyone, including those who are not members of the online network. This means that what you share in a public discussion or public group may be read by a wider audience, please consider this when sharing sensitive or personal details. The Online Network is not moderated by staff/volunteers on weekends. For urgent queries, contact the Helpline Team via email at [email protected] or phone 1800 500 258, Monday to Friday, 9:00am-5:00pm AEDT.
Groups
CALD Connection
A welcoming space for people from culturally and linguistically diverse (CALD) backgrounds to connect, share experiences, and support one another. This group celebrates different languages, traditions, and stories while building strong, respectful connections. Join us to learn from one another, celebrate diversity, and contribute to a community where every voice matters.CR Connect
This is a dedicated space for BCNA Seat at the Table (SATT) trained Consumer Representatives (CRs) to connect, collaborate, share ideas, experiences and resources.BCNA Mod Squad
