Together for breast cancer - BCNA
With October being breast cancer awareness month, we wanted to share updates with you throughout! So simply scroll down this post to see updates within the comments! Breast Cancer Awareness Month starts today, and it’s the perfect time to get together with your community to support Australians affected by breast cancer. We love to see the Pink Sports Day clubs kicking off the month the right way with their #PLAY4BCNA activities. Here are a few fantastic photos from our Pink Sports Day hosts so far this year! Host your own Pink Sports Day with your club or school team this month by registering here https://www.bcna.org.au/host-a-fundraising-event/ Together we're helping all Australians affected by breast cancer.BCNA Webcast - Breaking Barriers: Global Insights and Local Voices on Metastatic Breast Cancer
Join us for BCNA’s latest webcast Breaking Barriers: Global Insights and Local Voices on Metastatic Breast Cancer. The webcast will feature special guests Dr Hope Rugo, a renowned expert in breast cancer research, and BCNA Consumer Representative Laura Yannouni, who is living with metastatic breast cancer. Don't miss this unique opportunity to gain valuable insights, learn from leading experts, and be part of a conversation that aims to drive change and foster hope. Date: Tuesday, 13 August 2024 Time: 3.30pm to 4.30pm AEST Register hereMaking Metastatic Breast Cancer Count - Parliamentary Friends of Women's Health panel discussion
BCNA and the Parliamentary Friends of Women's Health are holding a panel discussion – Making Metastatic Breast Cancer Count – at Parliament House, Canberra, 8-9am Thursday 3 August. It’s part of our advocacy calling for people living with metastatic breast cancer in Australia to be consistently counted on our cancer registries. If you are not counted you are not seen, which means you are ‘invisible’ when health service providers and policymakers plan cancer services and support. The event to be co-hosted by MPs Peta Murphy and Bridget Archer, will also hear from BCNA Consumer Representative Lisa Tobin from Perth who has been living with breast cancer for 23 years and metastatic breast cancer for the past 11 years. This event will be livestreamed from 8-9am AEST on Thursday 3 August via this link: https://aph.webex.com/aph/j.php?MTID=m7904c34e381cececf621eb6987c0e4c4 Please note that the livestream is being hosted by the Australian Parliament House on Webex. Webex is free to use either in-browser or by downloading the client onto your computer. We are aware that this may be your first-time using Webex, we encourage you to join the meeting early to ensure everything is working. You can also find troubleshooting assistance here. When you join, please ensure that your microphone and cameras are turned off.
Coffs Harbour Information Forum livestream on 7 September
Hi everyone, We are holding an Information Forum in Coffs Harbour on 7 September, 9.30am - 3.00pm. During the event, you will hear from - Those with a lived experience of breast cancer Medical Oncologist, Dr Michelle White Oncology Social Worker, Dr Carrie Lethborg Australasian Lymphology Certified Nurse, Lee Millard-Newton Exercise Physiologist, Hugh Campbell Breast Care Nurse, Jane Kelly Social Worker, Rob Brangwin These presenters will cover new and emerging treatments for early breast cancer and metastatic breast cancer, managing the emotional impacts of living with breast cancer, lymphoedema, exercise, local services and support and financial impacts. This event is now only available to livestream. To register please click here. We would love to see you online! We will also make the presentations available on our website following the event and will share the link with you here. Please feel free to share the registration link with anyone else you think may be interested. Many thanks @Carissa_BCNAFriday Update 11th August 2023
Hello members and welcome to another Friday update, You will probably notice BCNA activity in my recent posts. We headed to Canberra last week for the ‘National Metastatic Breast Cancer’ data roundtable and we are also busy preparing for the Field of Women event this month. I will share more details below in case you missed it! Thankyou for your contributions to the proposed new private group Triple Negative Breast Cancer (TNBC) which is now available to join. Community Highlights Popular Forum Discussions If you have missed some of the most active discussions last month, you can check them out via the links below: International Flat Day Oct 7 I think it’s come back… Breast cancer confirmed, biopsy and PET scheduled for 1st week of Aug. New Diagnosis Just diagnosed this week Posts by 'Category Name' 22 July - 11 August 2023 Featured Private Group - 'Carers Corner' With so many tailored private groups available through the Online Network, I have decided to 'feature' a group in my Friday Updates for those who are new to the community or haven't explored groups. The Carers Corner group may be suitable for someone diagnosed with breast cancer who is also managing the responsibility of caring for someone in their life; or perhaps you are a partner, parent, child or family member caring for someone with breast cancer. We hope this can be a space for members to share their stories and provide support to each other. Community News BCNA News 03 August 2023 – People living with metastatic breast cancer call to be counted Not many people know that people living with metastatic breast cancer in Australia are not consistently counted on our cancer registries CLICK HERE to read more. BCNA News 05 August 2023 - BCNA alarmed about delays in diagnosis and access to treatment for breast cancer in Queensland Breast Cancer Network Australia (BCNA) is alarmed people in Queensland are waiting months for test results to confirm breast cancer and then delays for treatment after a diagnosis CLICK HERE to read more and watch https://youtu.be/5ggUW5yLFdE BCNA Remembers Harry Brooks It is with a heavy heart that we share Breast Cancer Network Australia (BCNA) member and passionate advocate, Harry Brooks has died from metastatic breast cancer in June. Harry was a person with enormous character and determination, demonstrated through his commitment and ability to raise awareness and greater understanding in the community of males living with breast cancer. Over the years, Harry has been involved in many projects with BCNA including attending the first Blokes with breast cancer Zoom call in 2020. Harry was often asked to be the keynote speaker at community events, leaving a lasting impression on all in attendance. He was a proud member of the 2023 Consumer working group for the upcoming Field of Women as well as speaking regularly to BCNA staff. Those regular calls and emails with staff, who were privileged enough to work with him, are already missed. 'My goal is to educate others in order to reduce stigmatisation, judgement, and negativity so all men with breast cancer feel supported.' – Harry. Thank you, Harry, for all you have done to give male breast cancer a voice. Your work will continue now and into the future. Harry is survived by his beautiful wife, Yvonne, their two proud daughters, sons-in-law, and grandchildren. Making Metastatic Breast Cancer Count We are excited to share with you an update on our National Metastatic Breast Cancer data roundtable that was held last week in Canberra. The roundtable was a key recommendation of our inaugural issues paper, Making Metastatic Breast Cancer Count, launched in October of last year. After several months of careful planning and extensive engagement with the sector, we successfully held a national roundtable bringing together over 35 experts across cancer registries, cancer epidemiology, policy, research, and several peak clinical groups. Head to the recent Online Network discussion to read further Making Metastatic Breast Cancer Count - Parliamentary Friends of Women's Health panel discussion BCNA Forums/Webcasts Coffs Harbour Information Forum BCNA is hosting an Information Forum in Coffs Harbour on the 7th of September 2023 for everyone affected by breast cancer, including their supporters, covering a range of vital topics CLICK HERE to register (Note: If you are unable to attend in person, you can still join us virtually. When registering, select ‘Information Forum – Attending Virtually’. The virtual session will be delivered via Zoom, and you will receive the access link one day before the event). Field of Women – 20th August 2023 In 2005 Breast Cancer Network Australia (BCNA) brought the Field of Women to life on the biggest stage as a visual representation of the statistics behind breast cancer at Melbourne's iconic MCG. It was ground-breaking as the first event of it's kind, aligning a cause that affects so many, with a sport that so many are mad about. This year's Field of Women will be held on Sunday 20 August. Buy your tickets or read more about our ground-breaking work over the past 25years via the link Field of Women 2023 tickets now available! You can also read our recent Online Network discussion Field of Women - Sunday 20th August 2023 Books/Movies/TV Series/Documentaries This week I thought you may like to watch Consumer Representative Lisa Tobin’s presentation The role of BCNA Consumer Representatives- Lisa Tobin - YouTube If you would like to know more about how you can get involved with BCNA CLICK HERE That’s all for today’s update. Please take care and if you have any questions or feedback please messaged of our Online Network moderators below: @Jenny_BCNA @Pat_BCNA @Mez_BCNA @Risha_BCNA @Denise_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, Jenny, Pat, Denise and Risha "We are only as strong as we are united, as weak as we are divided”
Friday Update - 8th July 2022
Friday Update 8th July 2022 Hi everyone, Apologies for the belated Friday update. What a busy and wonderful month of activity for BCNA in June. Hopefully I can catch you up in today’s update. In the next update I will be able to share registration details of the Wagga Wagga Information Forum, however you can bookmark it in your calendar to be held on the 17th of August 2022. Take care and enjoy the update. Community highlights June Online Network activity The month of June saw the Online Network receive a total number of 11,380 visitors to the community: 85 discussions and 444 comments. First Peoples Private Group This is NAIDOC week, therefore it is a timely reminder about the online network private group First Peoples . If you identify as an Aboriginal or Torres Strait Islander and have been affected by breast cancer, you may like to share your experience or reach out to others for support who are going through a similar journey. Popular forum discussions Members new and old may have missed some of the forum discussions that have been most active the past fortnight: 1. How long on hormone blocker medication 2. Feeling sorry and horrible 3. Happy Belated Birthday 🥂 4. Metal staples in breast Posts by ‘Category’ Name’ June 24 – 8 Jul 2022 Community News BCNA My Journey article updates Recently, we launched an updated financial factsheet that explains the medical costs of breast cancer and provides advice on understanding financial consent, your income options, and where to find help. You can read this now via My Journey - Managing the costs of breast cancer . You can read more about our Policy & Advocacy Strategy: Towards 2025 via the following link: https://www.bcna.org.au/about-us/advocacy/ Approximately 5-10% of breast cancers are thought to be hereditary. You can read more information in My Journey in the new article Genetics and risk of breast cancer Did you miss the Launceston TAS forum? Thank you to everyone who attended our Information Forum in Launceston on the 22nd of June. We were lucky enough to be joined by local groups in Tasmania such as Canteen Australia, Women’s Health Tasmania, Encore and Cancer Council Tasmania. We also had wonderful presenters Dr Ben Forster, Dr Carrie Lethborg, Collette Eberhardt, Sandra Carter, Jenny Gilchrist, Orla Timmins, Katie-Jane Brickwood and Emma Warnecke who shared relevant information and helpful tips and resources. You will be able to watch the on-demand recording in the coming weeks so stay tuned. You may want to watch the Ballarat forum recording in the meantime via the link Ballarat Information Forum Pink Lady Match – The Power of Pink As you can see from some of the great pictures captured, it was so wonderful to get back to The Pink Lady Match which hasn’t happened since 2019. For me the tribute field was definitely a highlight, it was a clear Melbourne night and it was just beautiful to see everyone out there supporting people affected by breast cancer. BCNA raised almost $350,000 across our #PLAY4BCNA beanie and merchandise sales and the Virtual Pink Lady donations for the match which will provide vital support for the more than 20,000 Australians diagnosed with breast cancer this year. Thanks to this amazing support BCNA will continue to work to ensure they receive the very best treatment, care and support. Thankyou to all of you who said hello, offered messages of support, donated or purchased BCNA merchandise. Looking forward to next year’s Field of Women (Register your interest here https://www.bcna.org.au/news-events/2023-field-of-women/) BCNA Network News - Updates on new breast cancer treatments and technologies BCNA made a submission to Pharmaceutical Benefits Advisory Committee (PBAC) in support of trastuzumab deruxtecan (Enhertu™) for the treatment of metastatic HER2+ breast cancer patients who have received a prior HER2 treatment in the metastatic setting. This will be considered in PBAC's July 2022 meeting. BCNA also made a submission to Medical Services Advisory Committee (MSAC) in support of the multi-gene prognosis test, EndoPredict™ for those with ER+, HER2- breast cancer. BCNA supports evidence that EndoPredict™ and other genetic tests can assist multi-disciplinary teams to better predict the risk of breast cancer recurrence and tailor treatment accordingly. EndoPredict™ will be considered by MSAC in its July 2022 meeting for subsidy on the MBS. BCNA Network News – Trials and Studies Consumers receiving an oral hormonal treatment for HR+/HER2- advanced breast cancer are invited by researchers to complete the online screener via the consumer-facing materials found HERE. BRCA-P: BRCA-P is a world-first trial that aims to prevent breast cancer in women with a BRCA1 gene mutation CAPTURE: The CAPTURE clinical trial aims to identify women and men with hormone-receptor positive metastatic breast cancer, who may benefit from a novel combination of drugs that may improve progression free survival and offer a new treatment option. DIAmOND: The DIAmOND clinical trial will investigate if the addition of two immunotherapy drugs to Herceptin (Trastuzumab) will improve treatments and outcomes for women and men who have HER2-positive metastatic breast cancer. EXPERT: EXPERT aims to improve personalised use of radiation therapy in early breast cancer patients by using a genomic test to identify women who can safely avoid this treatment after surgery and the possible side effects. FINER: The FINER clinical trial aims to find out if cancer will remain under control for longer in patients with advanced ER-positive and HER2-negative breast cancer. (Please discuss suitability of trials relevant to your needs with your treating team and you can read more about breast cancer trials HERE) Study of artistic tattooing of breast cancer mastectomy scars Our Policy & Advocacy team wanted to share a study that may be of interest to our Online Network members: Tina-Maree Newlan, current student of Charles Sturt University and Psychology Honours candidate, is currently conducting a qualitative exploratory study investigating the experiences of women who have had breast cancer mastectomy surgery and tattooed (or are in the process of tattooing) their mastectomy scars. Tina-Maree is looking for 8-10 women, of all ages (18+), who have had the above and would like to participate in an interview with Tina-Maree. For further information, or to indicate that you are interested in participating, please email Tina-Maree on tinanewlan@bigpond.com on or prior to 15th July 2022 Webcasts - What did you miss? Did you miss Ask the Expert digital event with Dr Michelle White on managing side effects of hormone blocking treatment? Dr Michelle White and BCNA Consumer Representative Kym Berchtenbreiter discuss the side effects of hormone blocking treatment and how to manage them. The video is now available to be viewed on-demand https://bit.ly/3nGDe1w Podcasts Episode 44: Work after breast cancer: Tackling the difficult conversations Joining us for this episode of Upfront are Greg Smith and Lisa Edgar. We hear about how best to approach your employer to discuss your diagnosis and treatment and the potential impact on your work, what support you should expect from your workplace, the main challenges faced when working after a diagnosis and beyond, and what you can do if your employer is not supportive of you. We look forward to launching the ‘Men & Breast Cancer’ podcast this month with two of our consumer reps Harry and Pieter. Reports are that it is another excellent discussion and will be very helpful for men diagnosed with breast cancer. Books / Movies/ TV Series/ Documentaries Continuing with the relevance to NAIDOC Week, I wanted to share the BCNA website page Information for First Peoples that provides specific information for First Peoples diagnosed with breast cancer. Hope you found the update informative and if you have feedback or any concerns while online, please contact one of the moderators: @Jenny_BCNA @Carissa_BCNA @Anna_BCNA @Pat_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 “Those who lose dreaming are lost” – Aboriginal ProverbFriday Update - 10th June 2022
Friday Update 10th June 2022 Hello everyone, June has come upon us and there are magnificent events and activities happening at BCNA. We have the Launceston TAS forum and the Pink Lady Match at the MCG only two weeks away. More details below! Rug up in this chilly winter weather and if anyone lives near the snow, would love to see pictures. Enjoy the update. Community highlights May Online Network activity The month of May saw the Online Network receive a total number of 14,509 visitors to the community: 77 discussions and 466 comments. The Choosing Breast Reconstruction Group was the most active private group (Remember to check in on groups you are part of as the platform does not yet have ability to notify members of new posts) Popular forum discussions Members new and old may have missed some of the forum discussions that have been most active the past fortnight: 1. Bouncing forward - can we do this? 2. Newly Diagnosed and Anxious 3. Devastated 4. Everything seems to be wrong Posts by ‘Category Name’ 27 May - 10 June 2022 Community News BCNA My Journey article updates Comprehensive information has been added to My Journey article 'Eye problems related to breast cancer treatment' Two weeks until the Launceston TAS Forum! BCNA will be in Launceston on Wednesday 22 June to host Information Forums for people living with breast cancer. There will be two concurrent information sessions throughout the day – one for people with early breast cancer and one for people with metastatic breast cancer. Please register for the session that is appropriate for your diagnosis. CLICK HERE for further information and links to register. Happy 70th Birthday Lyn BCNA founder Lyn Swinburne had her 70th birthday on the 6th of June. We wish her many happy returns and grateful for her vision to support the lives of Australians affected by breast cancer. You are welcome to pass on your birthday messages and I will be sure to share. Check out Kirsten’s birthday wishes here https://www.facebook.com/watch/?v=1215423725870038 Pink Lady Match – 23 June 2022 Breast Cancer Network Australia's (BCNA) partner and reigning premiers, Melbourne Football Club will take on the Brisbane Lions in a top of the table clash and no matter where you live across Australia, you can get involved - in person or virtually! We are inviting our network to join us ar the MCG on Thursday 23 June for the 7:20pm match. Register now to sit in our VIP ‘Pink Lady Bay’ and receive complementary double pass to attend the match Register for Pink Lady Bay tickets Help BCNA fill the virtual pink lady on the MCG We acknowledge many people won’t be able to physically attend due to the location, health or other circumstances. Our virtual Pink Lady is here to stay to help you get involved no matter where you are on the night Buy My Virtual Pink Lady Place Now Oncology News: ‘ASCO 2022: Study offers guidance for future trials of adjuvant therapy for patients with early HR+/HER2- breast cancer’ The study aimed at clarifying issues about the early, short-term effectiveness of drugs known as CDK4/6 inhibitors in adjuvant treatment of patients with high-risk hormone receptor-positive, HER2-negative (HR+/HER2-) breast cancer Read full article here Webcasts Webcasts for newly diagnosed members I thought it was worth mentioning for our newest members diagnosed in 2022 to check out 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. manage symptoms, and where you can find help. Books / Movies/ TV Series/ Documentaries ABC iView have a great three-part series ‘How to Live Younger’. It aired eight months ago however I only just viewed it recently and online network members may find it interesting: https://iview.abc.net.au/show/how-to-live-younger Please take care and if you have feedback or any concerns while online, please contact one of the moderators - @Jenny_BCNA @Carissa_BCNA @Anna_BCNA @Pat_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 “To appreciate the beauty of a snowflake it is necessary to stand out in the cold” – Aristotle
