Navigating the forum
I noticed a comment from @Linda258au in the Activity tab. Not being sure of how to navigate the forum This link from ages ago is probably the most helpful "Navigating the online community (formerly the what and how thread) — BCNA Online Network" https://onlinenetwork.bcna.org.au/discussion/14879/navigating-the-online-community-formerly-the-what-and-how-threadBallarat forum
Today I was an attendee at a BCNA Forum held in Ballarat for both Early Breast Cancer and Metastatic Breast Cancer. It was an extremely well run forum with opportunity for questions either of the presenters direct or through an open panel discussion towards the end. I urge all of you to consider a forum when there's one coming to a town near you. I live an hour away from this one so the discussion on local practitioners was not relevant to me personally however the problems faced and topics covered are relevant regardless of where I live. To @Marianne_BCNA and @Kirsten_BCNA - well done! BTW lunch was good as well as Take careFriday 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 20th January 2022
Hello members, Welcome to the first 2023 Friday Update! Myself and the Online Network moderators want to thank everyone who kept in touch over the closure period to highlight items that required attention. This was appreciated and helpful. I hope that you are becoming more familiar with the new format of the Online Network and I am continually gathering feedback, which is much appreciated. The 'Navigating the online community' guidelines are slowly being updated in the background and during the year I hope to add more video instruction. Enjoy the update! Community Highlights Let's look back on some of the engagement and activity on the Online Network in 2022: 1071 discussions 6,324 comments 437 contributors 2,886 active users 776,828 page views Top 5 Popular forum discussions in 2022 Members new and old may have missed some of the forum discussions that have received the most comments in 2022: 1. Friday Funnies 2. Wise words .... 3. Creative Corner! 4. Mastectomy this Thursday.. 5. I'm confused New Private Group in 2022 In 2022 we created the new 'Living in Regional, Rural and Remote areas' private group. A place for discussing topics and issues with people who have similar experiences in accessing treatment and support. Welcome to the 36 members who have joined the group so far! Community News BCNA's 25th anniversary year We are very excited about our 25th anniversary year 2023 and will see a number of iconic events return, including Carman's Fun Run next month, the Pink Bun campaign in May, and of course the Field of Women in August, where we will once again take to the field of the MCG to show the power of pink! Policy and advocacy will continue to be a priority this year, as we work to improve equity of access to optimal breast cancer care, and improve experiences of living well with and beyond breast cancer. We will continue to support you with our many helpful resources, including our Helpline, new look Online Network, webcasts, podcasts, My Journey, along with in-person support through our Information Forums. We can't wait! Field of Women registration of interest form and more information: https://bcna.live/FieldOfWomen2023 BCNA's Digital Resources We have had quite a number of new members to the Online Network in December and January that may not be aware of BCNA's full range of digital resources : Our digital conferences share insights from health professionals, trusted advisors, and those with a lived experience. Our one hour on-demand webcasts provide access to helpful, up-to-date information. Our Upfront About Breast Cancer podcast series provides raw, real and honest stories from those who have had their own breast cancer experience, as well as providing access to the latest information from a range of healthcare professionals and experts. Listen or view at your convivence at any time! Check out our large library of free digital resources here: https://buff.ly/3Gdjs7K Carman's Fun Run Carman’s Fun Run which will take place on Sunday 19th February. Get on board now to support Breast Cancer Network Australia while enjoying a fun day out with your family and friends. There are loads of fundraising incentives and prizes to win! Plus, the Top 20 fundraisers will be invited to an exclusive VIP breakfast at Carman’s HQ on Wednesday 15 February! Register via the following link: https://bcna.live/CarmansFunRun BCNA Forums in 2023 Save the dates for BCNA forums for 2023. The event registration form for the forums becomes available closer to the dates: Port Lincoln 7 March 23 Adelaide 8 March HP event (supporting Survivorship conference 9-10 March) Warrnambool 28 March Darwin 16 May Darwin HP event 17 May Yarning Circle 18 May Darwin Hahndorf SA 13 June Bunbury WA 22 June Coffs Harbour HP event 6 September Coffs Harbour 7 September Shepparton 22 November Counterpart Online Workshops Counterpart offer a range of free sessions for women impacted by cancer. You can check out the upcoming events for February via the link Events for women with cancer - Archives - Counterpart There is the session 'Scanxiety for women living with metastatic cancer' workshop on the 28/02/2023 Events for women with cancer - Archives - Counterpart New Helpline Services Staff - Risha We had the lovely Risha join BCNA's Helpline Services team in 2022 and I thought it would be nice to introduce her formally to the Online Network. Risha hails from India, having been born and raised there. She came to Australia for her higher studies, way back in 1997 and has stayed on since then as she met her husband here. Both just fell in love with Australia- its natural beauty, easy-going lifestyle, and super friendly people and they never wanted to leave. Risha has a bachelor’s in business and has had extensive experience in client services within the public service sector, having worked in quite a few key departments spanning over 10 years. Risha took a professional hiatus to be able to raise her two beautiful boys who are now sporty tweens. Back in the workforce in a full-time capacity, she is all settled into her new role in Helpline Services. Risha is very excited to be a part of BCNA as ‘giving back’ is a big part of who she is, and she loves nothing more than helping others. When she is not working for BCNA, she is busy doing the mum thing and discovering new places, foods, and adventures with her three special boys. Take care and if you have feedback or any concerns while online, please contact one of the moderators - @Jenny_BCNA @Carissa_BCNA @Pat_BCNA @Mez_BCNA If you need to speak with someone regarding your concern, please call 1800 500 258 Monday-Friday 9:00am - 5:00pm (AEDT) alternatively, you can email contact@bcna.org.au The mod team – Mez, Carissa, Jenny, & Pat “Write in your heart that every day is the best day in the year”. – Ralph Waldo EmersonFriday Update - 3rd May 2024
Welcome to May! This month is always busy for BCNA with the launch of the Pink Bun Campaign (9-29 May), where 100% of Fun Bun sales go directly to BCNA. We also see many wonderful Pink Sports Day events happening around Australia; turning PINK is a great way for clubs, associations and schools to create awareness and show support for the families in their local community affected by breast cancer. There has also been plenty of important media in relation to breast cancer related drugs and the Pharmaceutical Benefits Scheme (PBS), which we will share below. Enjoy the update. Community Highlights April Activity April saw 59 new discussions; 443 new comments and 13,119 visits to the community. Popular Forum Discussions If you have missed some of the most active discussions in the last few weeks, you can check them out via the links below: Exchange Surgery and 4th Cancerversary 💗 Wise words .... Feeling cold all the time tip or tricks on getting through radiation? Boob farewell? Posts by 'Category Name' 1 - 20 April 2024 Community News BCNA News - Life prolonging breast cancer drug recommended for PBS subsidy, but it is not to celebrate Breast Cancer Network Australia (BCNA) last week welcomed a decision by the Pharmaceutical Benefits Advisory Committee (PBAC) to recommend the life prolonging breast cancer drug Enhertu (trastuzumab deruxtecan) for government subsidy on the Pharmaceutical Benefits Scheme (PBS) for HER2-low metastatic breast cancer. However, BCNA Director of Policy, Advocacy & Support Services, Vicki Durston, said that we are not yet able to celebrate because the drug remains out of reach to thousands who need it. This is because the pharmaceutical company AstraZeneca refuses to increase access by lowering the price of its Patient Access Program (PAP) for Enhertu Read Further Details Here BCNA News - Transformative funding for Australian medical research must centre people with a lived experience Medical research achieves much greater outcomes if people with lived experience are involved in its design and implementation, according to Breast Cancer Network Australia (BCNA) – Australia’s leading breast cancer consumer organisation. Welcoming the Australian Government’s $1.89 billion Health Research for a Future Made in Australia funding package, BCNA Director of Policy, Advocacy & Support Services Vicki Durston said involving consumers means that Australian researchers can remain at the cutting edge of research Read Further Details Here SBS News - Drug (Verzenio) offers new hope for Australians with breast cancer Patients at high risk of their breast cancer returning will soon have access to a treatment that could prevent just that. For some a re-diagnosis is their biggest fear, which is why improved access to a key drug is considered an important step. Listen to the SBS Podcast Drug offers new hope for Australians with breast cancer | SBS News ABC News - Breast Cancer is becoming more common among under -50s and free screening is a secret Even though there's recognition women can get breast cancer when they're younger, it's still more common in older people. "More than 75 per cent of breast cancers occur in women aged 50 to 74," said Vicki Durston, a director at BCNA. "However, there is increasing evidence that screening younger women is beneficial, which is why screening programs in Australia and other countries are often from age 40." Another problem relates to that issue of breast density and age, which we touched on above. A dense breast is not related to size or feel but whether a breast is made up of mostly glandular or fibrous tissue (dense) or fatty tissue (less dense). "One of the challenges in screening younger women is breast density, which is more common in younger women," Ms Durston said. "Breast density can reduce the ability for a mammogram to pick up cancer but can also be a risk factor for breast cancer." The combination of age and density makes it less appealing to offer mass screening to women under the age of 40. Instead, those women are advised to undertake regular self-examinations Read Further Details Here The Beacon Magazine - available now! In case you missed it, the latest edition of The Beacon magazine is available now. In this edition of The Beacon, we put a spotlight on the power of your voice. We hear incredible personal stories including from two young women carrying a BRCA gene mutation, the experience of caring for loved ones – and yourself too, and the view of a health professional who has had her own breast cancer diagnosis. We also celebrate the Government’s announcement of $1.5 million in funding to create a cancer data alliance to have people with metastatic breast cancer consistently counted on cancer registries across Australia. We hope you enjoy this edition of The Beacon. Click link to read The Beacon (bcna.org.au) Think Pink Foundation Have you heard of the Think Pink Foundation? Programs will continue to run online via Zoom and Live at the Centre (Victoria). Best of all, programs remain FREE for clients. Next week's sessions can be booked directly via the website or from the links below. Please remember to only register once. Pilates Art therapy Yoga Afternoon Pilates Aromatherapy Zumba Pink Sisters Support Group with guest Speaker Dale Ischia Bookings are essential so don't delay! BCNA Forums/Webcasts Webcasts Exercise is well known to positively impact your physical and emotional wellbeing. Did you know it can also positively affect things like fatigue, lymphoedema, muscle strength, depression and anxiety? Join us on Wednesday 22 May 7pm AEST to hear from Lauren Whiting, Founder and CEO of Lift Cancer Care Services. Lauren will be sharing simple and practical ways to incorporate exercise into your daily routine, the benefits of exercise, how to seek resources and access support from experts like an exercise physiologist. Submit your questions before or during the event to have them answered! This webcast is for anyone who has recently been diagnosed with breast cancer or who is living with or after a breast cancer diagnosis. To find out more and to register, visit the link https://www.bcna.org.au/event-directory/webcasts/let-s-cut-through-all-the-hype-why-exercise/ Books/Movies/TV Series/Documentaries We have been in Tasmania this week to present our Information Forums and one of the attendee's expressed how helpful they found Professor Neil Piller's presentation on Lymphoedema. You can check out his presentation at our Murray Bridge forum: https://www.youtube.com/watch?v=P53xQ5ppt-Q Take care and if you have any feedback please feel free to comment below or send a private message. The Mod Team - @Pat_BCNA @Mez_BCNA @Daina-BCNA @Kate_BCNA @Denise_BCNA @Risha_BCNA @Georgie_BCNA If you wish to speak with the Helpline team regarding your concern, please call 1800 500 258 Mon-Fri 9:00am - 5:00pm (AEST), alternatively you can email helpline@bcna.org.au "Movement is the song of the body." - Vanda ScaravelliFriday Update - 14th April 2023
Hello everyone, We are into the full swing of the 'Field of Women' early-bird pre-sale tickets campaign this week. If you missed this information on your socials or email, I will share all the details on how to access tickets to attend this amazing experience. We also have a great webcast coming up and recording from the Port Lincoln forum. Hope you enjoy this brief update and take care. Community Highlights Popular Forum Discussions If you have missed some of the most active discussions in the past couple of weeks, you can check them out via the links below: Her 2 for the second time Ways to lower cortisol. HRT (Estrogen and Progesterone Hormone Replacement Therapy) After cancer for menopause? Lat Dorsi reconstruction Happy & Safe Easter, everyone Posts by 'Category Name' 31March - 14 April 2023 Community News Field of Women 2023 BCNA is excited to announce early bird tickets for Field of Women 2023 are now on limited pre-sale (20% off standard price). Read more and buy here https://www.pinkladymatch.com.au/page/64/buy-tickets After five years, we can't wait to fill the MCG again and stand together to pay tribute to all those affected by breast cancer in our community. My Care Kit - New sizes available Berlei has introduced 10 new post-surgery bra sizes into the My Care Kit range. These include 16B, 20C, 22C, 22D, 24D, 10DD, 22DD, 24DD, *12E and 20E. (*Please note 12E will arrival in late April). We are also pleased to let you know that new stock will have an extended hook and eye clasp along the back of the bra to provide additional length. We hope that changes to the clasp and an increased size range will provide an alternative to the current bra extenders. The My Care Kit contains a Berlei bra that's been specifically designed for the immediate recovery period, soft form inserts and information. If you haven't accessed the My Care Kit before and you have recently had breast cancer surgery; you can request the My Care Kit through your breast care nurse, or by contacting BCNA's Helpline on 1800 500 258. Port Lincoln Forum - recording available The Information Forum covered a range of topics including the latest in breast cancer treatment, strategies to enhance physical and emotional wellbeing, lymphoedema, and how you can live well during treatment and beyond. It was an opportunity to hear about what BCNA does and the services and resources we have available, alongside hearing from the local community groups and BCNA members who will share their experiences on a panel. Guest speakers included Clinical Psychologist Dr Charlotte Tottman, Medical Oncologist Associate Professor Rohit Joshi, McGrath Breast Care Nurse Michelle Lydeamore, BCNA member Kerry Schubert, Chiropractor Mr Michael Cheesman, Specialised Lymphoedema Physiotherapist Kristy Roeger and a virtual presentation from Lymphologist Professor Neil Piller. To watch the on-demand videos of each presentation, please click here. Look Good Feel Better - Workshops Have you heard of the charity 'Look Good Feel Better'? They are a free national community service program, run by the Cancer Patients Foundation. They provide people with resources and workshops to help manage the appearance-related side-effects caused by cancer treatment. They have a number of face-to-face workshops coming up that I thought to share: * Campbelltown RSL (Campbelltown, NSW) Mon 17 Apr 2023 * Sydney Adventist Hospital - Jacaranda Lodge (Wahroonga, NSW) Tues 18 Apr 2023 * Macksville Community Health (Macksville, NSW) Tue 18 Apr 2023 * St Vincents Public Hospital (Fitzroy, VIC) Wed 19 Apr 2023 * Royal Brisbane YOU CAN CENTE 15-25 years old (Herston, QLD) Thu 20 Apr 2023 * Northern Beaches Hospital (Frenchs Forest, NSW) Fri 21 Apr 2023 * Canberra Southern Cross Club - Woden (Phillip, ACT) Mon 24 Apr 2023 * Peter MacCallum Cancer Centre (Parkville, VIC) Wed 26 Apr 2023 * Mater Private Hospital Redland (Cleveland, QLD) Wed 26 Apr 2023 * Royal Brisbane and Women's Hospital (Herston, QLD) Wed 26 Apr 2023 (Check out more workshop dates via the link https://lgfb.org.au/for-patients/workshop-registration/) Webcasts / Podcasts Webcast As promised in the last Friday Update, BCNA is hosting a webcast: 'Prioritising me – Setting healthy boundaries on Thursday 27 April'. A breast cancer experience and focusing on treatment and recovery can leave you feeling mentally and physically exhausted. During this time, it’s more important than ever to establish boundaries in your relationships, including those with your family, friends and work colleagues. This can help to take the best possible care of yourself and focus on living well during and beyond breast cancer. You will hear from Sarah Jonge, Director Supportive Care Services at Cancer Council Tasmania, and BCNA members Kath Elliott and Brega van Vugt will join us to discuss the importance of setting health boundaries during and beyond a breast cancer experience. Register now via the following link: https://bcna.live/PrioritisingMeWebcast Books / Movies / TV Series / Documentaries This week I thought I would share the ABC podcast which speaks to the subject of breast cancer during pregnancy. This is the story of Na'ama Carlin who was diagnosed with breast cancer, during pregnancy with her first child. The program also speaks to Prof Fran Boyle. 'Life and potential death': Being diagnosed with cancer while pregnant My Journey has an article on the subject of breast cancer during pregnancy, which you can read HERE Take care and if you have any feedback please feel free to comment below or send a private message. @Jenny_BCNA @Carissa_BCNA @Pat_BCNA @Mez_BCNA If you wish to speak with the Helpline team regarding your concern, please call 1800 500 258 Mon-Fri 9:00am - 5:00pm (AEST), alternatively you can email helpline@bcna.org.au The mod team - Mez, Carissa, Jenny and Pat "Autumn shows us how beautiful it is to let things go."
August Content Round-Up
Hi members, I hope you have all had a great month! Please find the content round-up below for August. As always, I’d love to hear what topics you want BCNA to explore further! Please send me an email acox@bcna.org.au 😊 Enjoy! Amelia The Beacon: The latest edition of The Beacon launches tomorrow! In this edition two women will share their experiences of living with metastatic breast cancer, you’ll hear from a woman who has been diagnosed with breast cancer twice and had a different experience the second time round, discover strategies to help you manage long-term side effects of breast cancer treatment and learn about your rights when it comes to health insurance. Plus, much more! View the latest edition via the BCNA website tomorrow and don’t forget to subscribe to ensure the next edition comes straight to your inbox! Webcast: Just diagnosed with metastatic breast cancer, what’s next? This month we hosted a webcast, ‘Just diagnosed with metastatic breast cancer, what’s next? We heard from Medical Oncologist Professor Fran Boyle, Metastatic McGrath Breast Care Nurse Alice Gibson, BCNA Consumer Representative Ros Casperson and BCNA member Cybele Orton. The webcast addressed what is important to know in those first few weeks after a diagnosis of metastatic breast cancer including navigating the health system, treatment options, identifying key members of your treating team, and the support and care available to you. Watch the on-demand video via the BCNA website. Information Forum: This month we’ve hosted two online Information Forums that will be available to watch on-demand in the coming weeks via the BCNA website. We’re hosting another online Information Forum on health and wellbeing on Thursday 8 September. You can register here. Additional resources: Don’t forget, we have so many existing webcasts, podcasts and articles on My Journey and in The Beacon that cover a range of topics. Explore them below! Digital events My Journey Podcast episodes The BeaconFriday Update - 8th March 2024
Hello existing members and our 'newbies' who have joined the Online Network community recently. If you are a new member, you may like to use the search function to type 'Friday Update' and read previous editions. We try to include Online Network activity; BCNA news/resources and external organisation resources. BCNA have been busy this week at the Murray Bridge SA Information forum and we cannot wait to share online recordings with you in the coming weeks. Out next Information Forum will be held in Tasmania on the 30th April 2024 (Registrations open soon). Please enjoy the update! Community Highlights Popular Forum Discussions If you have missed some of the most active discussions in the last few weeks, you can check them out via the links below: Struggling through Chemo Newly Diagnosed - Radiation Side Effects? The “journey” begins. Anxiety Plus Slow Down Project Posts by 'Category Name' 21 Feb - 08 March 2024 Community News Breast Cancer cannot wait: Open letter regarding inadequate access to diagnostic imaging in Tasmania for breast Cancer Breast Cancer Network Australia (BCNA) remains deeply concerned about the lack of access to diagnostic imaging in the public system in the south of Tasmania and calls on all candidates contesting the 2024 state election to make commitments to fix this issue and restore basic rights to healthcare for Tasmanian women. Read the open letter Triple Negative Breast Cancer (TNBC) Day - 3rd March 2024 Triple Negative Breast Cancer (TNBC) Day is a good time to acknowledge the significance of the drug Keytruda being added to the Pharmaceutical Benefits Scheme (PBS) late last year. In September 2023 Keytruda was added to the PBS for those with metastatic TNBC and in December it was added for those with early TNBC. Around 3000 Australians are diagnosed with TNBC each year, it is an aggressive and fast-growing form of breast cancer with fewer treatment options. Having this crucial drug on the PBS means more equitable access while also reducing the financial burden of a breast cancer diagnosis. We thank all the BCNA consumers who joined us in our successful advocacy to get this drug listed. Don't forgot here through the Online Network if have a private group Triple Negative Breast Cancer (TNBC) Lymphoedema Awareness Week Lymphoedema Awareness Week is a chance to celebrate work being done to develop an online tool for people with – or at risk of – lymphoedema as a result of a breast cancer diagnosis. The tool is being led by Flinders Health and Medical Research Institute’s (FHMRI) Cancer researcher Professor Bogda Koczwara AM in partnership with BCNA. Lymphoedema is the build-up of fluid in patients’ arms, resulting from damage or removal of lymph nodes during breast cancer treatment. The condition can develop soon after surgery or many years later. Prof. Koczwara says breast cancer survivors living in rural and remote locations are particularly at risk because of limited health support and will benefit most from an online self-management tool. Read more via the link Helping cancer survivors manage lymphoedema Also check out Lymphologist Pro Neil Piller speak at our Warrnambool Information Forum last year Warrnambool Information Forum: Prof Neil Piller- lymphatic system and lymphoedema (youtube.com) In 2022 BCNA held an 'Ask the Expert' webcast Living well with lymphoedema - In this Ask the Expert event, we heard from lymphoedema physiotherapist Maree O’Connor and BCNA Consumer Monique Bareham. Maree is lymphoedema physiotherapist with over 30 years experience in the management of lymphoedema for people affected by breast cancer and Monique was recently announced as South Australia’s 2022 Local Hero for her advocacy for compression garments for lymphoedema after her own personal experience of lymphoedema following breast cancer treatment. BCNA 2024 Impact Report We are thrilled to deliver our 2024 Impact Report. It highlights the many ways in which your generosity has helped BCNA support Australians affected by breast cancer in the past year. Hear about our key achievements, including our continued policy and advocacy work, delivering our newly refreshed website, and the 10,000-strong crowd who stood on the MCG at Field of Women. Read our impact report via link 2024 Impact Report (bcna.org.au) Centre for Genetics Education - Breast cancer and inherited susceptibility BCNA's Helpline team have noticed an increase in the number of people seeking information about genetics and the risk of breast cancer. The Centre for Genetics Education have a great page on the topic Breast cancer and inherited susceptibility (genetics.edu.au) BCNA Forums/Webcasts Persistent pain after breast cancer - Recording available ! https://www.youtube.com/watch?v=SGWv6HhHn3Q In Persistent pain after breast cancer – addressing quality of life we explored pain from both a clinical and personal perspective. This webcast addressed persistent pain associated with early breast cancer treatments, strategies to help manage pain and resources and support that may be available. We heard from Naveena Nekkalapudi, BCNA Consumer Representative; Professor Paul Glare, Pain Medicine Specialist and Dr Charlotte Tottman, Clinical Psychologist. Welcome Georgie to BCNA's Helpline team Last year we had the pleasure of welcoming Georgie into the Helpline team and we wanted to share her introduction. Georgie has hit the ground running and has been a wonderful addition to the team with her empathy and guidance: My Name is Georgie; I have been with BCNA since August 2023, and I love being a part of the Helpline team. I have been in the health sector for over 8 years now, and love being able to help others. I have a fur baby who I love taking on plenty of walks and adventures. Take care and if you have any feedback please feel free to comment below or send a private message. The Mod Team - @Pat_BCNA @Mez_BCNA @Daina-BCNA @Kate_BCNA @Denise_BCNA @Risha_BCNA @Georgie_BCNA If you wish to speak with the Helpline team regarding your concern, please call 1800 500 258 Mon-Fri 9:00am - 5:00pm (AEDT), alternatively you can email helpline@bcna.org.au "Those who bring sunshine to the lives of others cannot keep it from themselves." - James Matthew BarrieFriday Update - 12th July 2024
Welcome to the latest Friday Update! This week is NAIDOC week (National Aboriginal and Islanders Day Observance Committee) and celebrates the history, culture and achievements of Aboriginal and Torres Strait Islander peoples. Therefore we will again highlight BCNA's information and support for our First Peoples. Last month we had the Pink Lady Match at the MCG, of which we will share great images from the event. We will also share where you can watch our information forums online; the latest Policy & Advocacy news and more! Enjoy with you warm cuppa :) Community Highlights June Activity June saw 89 new members; 69 new discussions; 489 new comments and 11,906 visits to the community. Popular Forum Discussions If you have missed some of the most active discussions in the last few weeks, you can check them out via the links below: Struggling through Chemo chemo or no chemo 38yo solo mama, what is happening?! Dizzy turns - BC Trip Negative diagnosed July 2019 Doesn't get any easier Posts by 'Category Name' 1-30 June 2024 Community News Pink Lady Match - More than a Game The power of connection was on full display last Saturday night at the MCG with almost 30,000 fans attending to support Melbourne Football Club and North Melbourne Football Club in the 2024 Pink Lady Match, thanks to our major partner Red Energy. Our Mini-Field of Women tribute outside the ground and light up display from partners Opal ANZ and Red Energy, welcomed fans to the ground before filling the Pink Lady Bays with a sea of pink beanies, scarves and ponchos. BCNA is thrilled to announce that over $165,000 was raised from PLAY4BCNA beanie sales and Virtual Pink Lady donations which will ensure BCNA can continue to provide vital support for the more than 20,000 Australians diagnosed with breast cancer this year. Check out the short video captured of the day https://spaces.hightail.com/receive/wYbO3ZsXF7 Did you know that BCNA advocates to reduce the cost of new breast cancer drugs? In the last three years we have supported over 15 submissions to campaign for these expensive breast cancer drugs to be put on the Pharmaceutical Benefits Scheme (PBS) so that they are more affordable In April we welcomed a decision by the Pharmaceutical Benefits Advisory Committee (PBAC) to recommend the life prolonging breast cancer drug Enhertu (trastuzumab deruxtecan) for government subsidy on the PBS for HER2-low metastatic breast cancer. Lynparza (olaparib) has recently been listed on the PBS for HER-2 negative early breast cancer with a confirmed BRCA mutation. Last year, BCNA advocated strongly for Lynparza’s subsidy as an important treatment option to help reduce the risk of breast cancer coming back after treatment for people who are at especially high risk of recurrence. BCNA remains committed to advocating for Lynparza’s subsidy for metastatic breast cancer patients. If you need support navigating your breast cancer treatment, call our Helpline on 1800 500 258. BCNA Podcast: What you Don't Know Until You Do UNLIMITED - "No" is a sentence (Boundary setting) EP8 After a cancer diagnosis and treatment, you often discover you are not able to operate at the same level as you did pre-cancer - physically, cognitively, or emotionally. In episode 8 of Upfront – What You Don’t Know Until You Do: Unlimited, Clinical Psychologist Dr Charlotte Tottman explains the importance of boundary setting in self-care, particularly in relation to the challenges in continuing to care for loved ones while navigating a cancer experience, and the role of guilt in this. We learn about how to identify your limits and act on them, communicate to others and ourselves, and how to identify alternative helpful activities and prioritise them Listen Here Providing the consumer voice in breast cancer research BCNA again celebrates the important role trained Consumer Representatives (CRs) play in ensuring the consumer voice is included in breast cancer research. CR Kathy Bell contributed to the study: Pioneering lower-dose combination treatments for breast cancer, one of 19 breast cancer research projects to receive a National Breast Cancer Foundation (NBCF) research grant. The study led by Associate Professor Lan Nguyen at Monash University will use an innovative approach to address the challenges posed by breast cancers resistant to PI3K targeting drugs. If you have a lived experience of breast cancer and would like to take part in studies and projects that aim to improve outcomes for others diagnosed, we invite you to join Review and Survey Group via the form below. You can find out more about the study and join the Review and Survey Group via the link Join the Review & Survey Group BCNA information for First Peoples Breast cancer is the most commonly diagnosed cancer in First Nations’ women. If you are one of these women, or know one of these women, BCNA has information in different formats to help support you during treatment and beyond. The information was developed with significant input from consumers through BCNA’s First Peoples Advisory Group. Read more about Information for First Peoples https://bcna.org.au/resource-hub/articles/information-for-first-peoples/ resources via the BCNA website. We have a private group right here through the Online Network First Peoples You can also visit Cancer Australia’s Our Mob and Cancer for information and resources for First Peoples diagnosed with cancer. BCNA Forums/Webcasts Where can you watch BCNA Forums? This year BCNA have held forums in South Australia (Murray Bridge), Tasmania (Devonport/Hobart) and Victoria (Shepparton). If you would like to find out more about the content presented in our forums, you can head to our YouTube Playlist to watch various location recordings: https://www.youtube.com/@BCNetworkAustralia/playlists Books/Movies/TV Series/Documentaries Women from First Peoples communities across Australia talk about why it’s important to look to your community, including friends and family, for strength and connection and how speaking to others who have had similar experiences can help you. We recommend you take care when watching this video as some people may find the content upsetting. The people featured in this video are sharing their own unscripted personal stories. This is not intended to replace medical or professional advice. This video was made with support from Cancer Australia through the Supporting Women in Rural Areas Diagnosed With Breast Cancer program. Published in 2022. https://youtu.be/1d5ShdMSS8E Enjoy and if you have any feedback please feel free to comment below or send a private message. The Mod Team - @Pat_BCNA @Mez_BCNA @Daina-BCNA @Kate_BCNA @Denise_BCNA @Risha_BCNA If you wish to speak with the Helpline team regarding your concern, please call 1800 500 258 Mon-Fri 9:00am - 5:00pm (AEST), alternatively you can email helpline@bcna.org.au "We are all visitors to this time, this place. We are just passing through. Our purpose here to observe, to learn, to grow, to love... and then we return home." - Australian Aboriginal ProverbFriday Update (On Tuesday!) - 18th June 2024
Hello members new, old and in between :) Well, it has been some time since I crammed in an update for you all (apologies) and Tuesday is just as good a day as any right? During the month of May BCNA had another very successful Pink Bun campaign and our webcast 'Let's cut through all the hype! Why exercise?' was a hit! As we head into June we have the Pink Lady Match at the MCG in support of breast cancer and we are also heading to Shepparton for our information forum. All of these details are provided in the update - enjoy! Hope you are all rugging up as we adjust to the winter air. You may like to read Cancer Council QLD's article Ward off the winter blues: five tips to stay on top of your health this winter Community Highlights May Activity May saw 79 new discussions; 674 new comments and 16,507 visits to the community. Popular Forum Discussions If you have missed some of the most active discussions in the last few weeks, you can check them out via the links below: Struggling through Chemo Anxious Newly Diagnosed Old habits die hard Friday Funnies After 13 years and 2 diagnoses today the biggest celebration yet... Posts by 'Category Name' 1- 31 May 2024 Community News Taking the pulse on our members' experience with BCNA We wanted to find out if BCNA’s information and support services—including our Helpline, Online Network, website, podcasts, and webcasts—are meeting the needs of our members. Late last year we sent out a member experience survey asking how we can improve the support we provide to people living with and beyond breast cancer Read further details here Thankyou! 2024 Pink Bun Campaign Wrap BCNA gratefully extend a heartfelt thank you to our foundation partner Bakers Delight, along with every person who purchased Fun Buns or made a donation in-store between May 9-29. It is you who made the 2024 Pink Bun campaign a huge success! With your help, Bakers Delight has raised an incredible $2 million, which will go directly to help Breast Cancer Network Australia support all Australians affected by breast cancer. I personally was honoured to be part of this years campaign and stand beside Sam as she bravely told her story. We need to talk about metastatic breast cancer - BCNA's new media guide 6 June 2024 Breast Cancer Network Australia (BCNA) – Australia’s leading voice for people affected by breast cancer – has released a media guide on how to talk about metastatic breast cancer. BCNA’s Director of Policy, Advocacy and Support Services Vicki Durston said she hoped the guide would help journalists, among others, when covering stories about metastatic breast cancer, and breast cancer more generally. Read the media release via the link BCNA’s new metastatic breast cancer guide and view the Media Guide BCNA Podcast - What you Don't Know Until You Do UNLIMITED "The view from the other side of the bed: the partner's perspective" EP7 If you haven't yet stumbled across Dr Charlotte Tottman's wonderful podcase series, I'm sure our Online Network members tell you its worth a listen. In our socials channel highlight recently that talks to a partner's perspective of their loved one's diagnosis Listen Here Pink Lady Match - This weekend! (21st June) Tickets are now on sale, so please help BCNA 'pink up' the game and show support for every Australian affected by breast cancer. If you can't make it to the game, please do show your support from afar by purchasing a virtual pink lady or a BCNA beanie. Visit the link https://www.pinkladymatch.com.au/ for tickets and merchandise today. BCNA Forums/Webcasts Forums - Attend our next event in-person (Shepparton, Vic) or online! Wednesday 26 June 2024 Breast Cancer Network Australia (BCNA) is heading to Shepparton, Victoria, as part of our national Information Forum series. We are bringing leading experts to the local community to provide insights on a range of breast cancer topics Register Here Webcasts On Wednesday 22 May we held BCNA’s webcast Let’s cut through all the hype! Why exercise? We were thrilled to have Lauren Whiting, Founder and CEO of Lift Cancer Care Services and trained Oncology Physiotherapist present on the night. Lauren spoke about the many benefits of getting regular exercise for anyone who has been recently diagnosed or who is living with or after a breast cancer diagnosis. She also talked through simple and practical ways exercise can be implemented in the comfort of your home, where to seek information and resources on exercise and how to access support from professionals like an exercise physiologist. We were also joined by two BCNA Consumer Representatives, Dr Andrea Smith and Dr Naama Carlin, sharing their experience with exercise and what it looks like for them. The on-demand recording of this webcast can be viewed below: https://www.youtube.com/watch?v=ACwFpR1M32Q Books/Movies/TV Series/Documentaries As mentioned in this update, I was very honoured to represent the Helpline team to work with our ambassador Sam in this year's Pink Bun Campaign (You know I plugged the Online Network of course!). Check out Sam's story below: https://youtu.be/id0jc-6r_DI Enjoy and if you have any feedback please feel free to comment below or send a private message. The Mod Team - @Pat_BCNA @Mez_BCNA @Daina-BCNA @Kate_BCNA @Denise_BCNA @Risha_BCNA If you wish to speak with the Helpline team regarding your concern, please call 1800 500 258 Mon-Fri 9:00am - 5:00pm (AEST), alternatively you can email helpline@bcna.org.au "You may find that making a difference for others makes the biggest difference in you." - Brian Williams
