Friday 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. B…105ViewsSign in to react to this post0CommentsFriday 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 …156ViewsSign in to react to this post1CommentFriday 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 Dr…118ViewsSign in to react to this post0CommentsFriday Update - 19th April 2024
Welcome to the Friday Update, March has flown by us already and we are half way through April! There has been alot of activity at BCNA including the Murray Bridge SA Information Forum, the World Indigenous Cancer Conference and BCNA's Think Tank . We are off to Tassie this month for two more information forums in Devonport and Launceston (Remember if you cannot attend in person, you can register to attend online). We are also gearing up for Bakers Delight’s Pink Bun campaign in May - Its 20th year! Head into your local Bakers Delight between 9 - 29 May, where 100% of the sales from every Fun Bun sold helps BCNA support all Australians affected by breast cancer (Further details in the update on how you can get involved). Take care and enjoy the update. Community Highlights Private Group 'Living with metastatic breast cancer' On Metastatic Awareness Day 2022 - BCNA released an issues paper, Making Metastatic Breast Cancer Count. In August 2023 we held a National Roundtable in Canberra, bringing together leading cancer and data experts to discuss a way forward. On Metastatic Awareness Day 2023 on 13 October, BCNA was proud to release Making Metastatic Breast Cancer Count - A Way Forward. This advocacy work has brought awareness to BCNA's support resources for metastatic breast cancer and also our very own private group here through the Online Network Living with metastatic breast cancer - which has seen many new members join to seek support and connection 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 Information Overload! Boob farewell? tip or tricks on getting through radiation? I’m in a grey area and confused Posts by 'Category Name' 1 Apr - 18 2024 Community News BCNA joins international call to challenge enduring inequities in breast cancer care An international report on global inequities in breast cancer care and to count the number of people with metastatic breast cancer was released by the new Lancet Commission on Breast Cancer this week. BCNA responded with a media release and social post. Read BCNA’s media release here. BCNA partners to seek wider access to precision cancer therapies BCNA partners with other cancer groups to call for expanded access to innovative and effective precision therapies Read Further Details Here Take part in research to improve our online services Can you help us continue to improve our website and online services? We’re working on a digital project to give you better access to information and support that is tailored to your personal preferences and experiences of breast cancer Read Further Details Here My Journey - 'Targeted Therapies' (Articles updated) Our goal at BCNA is to …146ViewsSign in to react to this post1CommentFriday Update (On Thursday!) - 28th March 2024
Hi everyone, It's a Friday Update on a Thursday! I deliver you an early Friday update as the BCNA office will be closed over the Easter period (5:00pm tonight, and will re-open on Tuesday 2nd April at 9:00 am) . Remember the Online Network is always here to help and you can request the Helpline team to call you back when we reopen by filling out this Form For information and resources about breast cancer, you can access our website https://www.bcna.org.au/resource-hub/ Wishing you a lovely Easter and however you mark the occasion, I hope it is with joy. Take care. Community Highlights March Activity March so far has seen 72 new discussions; 542 new comments and 15,913 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 New to This Anxiety Plus Slow Down Project Newly Diagnosed - Radiation Side Effects? Posts by 'Category Name' March 2024 Community News Election commitments fall sort to fix lack of access to public diagnostic mammography in Tasmania BCNA has been long been advocating for improvements in access to public diagnostic mammography in Tasmania Read Further Details Here STUDY: Fear of Cancer Recurrence among First Nations people with Breast Cancer Findings from the first study on fear of recurrence among Aboriginal and Torres Strait Islander people, Dr Kate Anderson from the University of Queensland, said many in the study worried about their cancer coming back or getting worse. “I think (better information) would have helped me a lot, because I felt like I was on my own and I was feeling this on my own” – from the study. You can read the full study via the link Fear of Cancer Recurrence among Aboriginal and Torres Strait Islander Women Diagnosed with Breast Cancer Volunteer for Pink Bun campaign Amazing opportunity to support your local Bakers Delight to raise funds in support of BCNA! Check out the volunteer opportunities in your state and if it sounds like something you would like to be part of, please apply Volunteer for Pink Bun campaign Check out the short video from last year's campaign: https://youtube.com/shorts/lR7cUGAu48Y?si=urg8l559M7S5p1Bk Research (Medical Xpress) Interesting research coming out of the UK. Scientists have discovered how breast cancer cells can "hibernate" to avoid treatment and "wake up" years later causing a relapse that is more difficult to treat. Research uncovers how to target 'sleeping' breast cancer cells and prevent relapse BCNA Forums/Webcasts BCNA is coming to Tasmania as part of our free national Information Forum series. We are bringing leading experts to events in Devonport on Tuesday 30 April and Hobart on…151ViewsSign in to react to this post1CommentFriday 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…125ViewsSign in to react to this post0CommentsFriday Update - 23rd February 2024
Welcome to the latest Friday update! We are still thrilled about the roadmap to finally count the number of people diagnosed with incurable and life limiting metastatic breast cancer (MBC) is a step closer thanks to the $1.5 million announced by Prime Minister Anthony Albanese to fund a cancer data alliance. In this update I will include the information related to this important development, in addition to support and information available to those diagnosed with metastatic breast cancer. Community Highlights February Activity February so far has seen 63 new discussions; 501 new comments and 15,725 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 Lumpectomy didn't work - now what? The “journey” begins. Today is @melclarity Birthday! New to the Journey Posts by 'Category Name' 01 - 20 Feb 2024 Community News Counting people with metastatic breast cancer: a step closer A roadmap to finally count the number of people diagnosed with incurable and life limiting metastatic breast cancer (MBC) is a step closer thanks to the $1.5 million announced Prime Minister Anthony Albanese to fund a cancer data alliance on Saturday 3 February. Read full details via the link Counting people with metastatic breast cancer: a step closer The following My Journey articles can be helpful for someone newly diagnosed with Metastatic Breast Cancer: Recently diagnosed with metastatic breast cancer? Top 5 tips What is metastatic breast cancer? People on your treating and care team for metastatic breast cancer Metastatic breast cancer: the first few weeks You can also watch BCNA’s Webcast: Just diagnosed with metastatic breast cancer - what’s next? and listen to Dr. Charlotte Tottman speak at one of BCNA’s forums about the Emotional impacts of metastatic breast cancer BCNA welcomes new Peta Murphy Breast Imaging Suite at Frankston Hospital Thousands of people in Frankston and broader Mornington Peninsula communities will have access to comprehensive public diagnostic breast imaging at the new Peta Murphy Breast Imaging Suite at Frankston Hospital. Read further via the link BCNA welcomes new Peta Murphy Breast Imaging Suite at Frankston Hospital Living well with and beyond breast cancer ‘Living well with and beyond breast cancer’ is the theme of BCNA’s third year of our Policy and Advocacy Strategic Plan: Towards 2025. BCNA has a plethora of resources – including engaging podcasts and webcasts featuring cancer experts in health and wellbeing. As part of this strategy, we have updated many of our exercise and wellbeing resources, including: · BCNA’s S…103ViewsSign in to react to this post0CommentsFriday Update 22nd December 2023 (BCNA Christmas Closure Details)
Friday Update - 22nd December 2023 Hello Online Network community and welcome to the final Friday Update of 2023! We haven't always kept up perfectly with the fortnightly update however we still managed 26 editions this year, so thankyou for reading. I would also like to acknowledge the 764 new members who have joined this year and while it isn't necessarily the community you hoped to be part of, we hope you have found support in connecting with others. Finally, a big shout out to our many long time members who continue to have a presence here and provide invaluable support to others. Myself and the rest of the moderating team always feel grateful to witness the incredible conversations and stories shared here. We hope to see you again in 2024! Thankyou BCNA Helpline over Christmas and New Year BCNA’s Helpline will be closed from 5pm today (AEDT) and will reopen on Wednesday 3 January at 9am (AEDT). During this time, you can request the Helpline team to call you back when we reopen by filling out this Form If you are seeking support during this time, you can get in touch with the following organisations: Cancer Council 13 11 20 https://www.cancer.org.au/ (operating on reduced hours) Beyond Blue 1300 224 436 https://www.beyondblue.org.au/ Lifeline 13 11 14 https://www.lifeline.org.au/ 1300YARN (12 92 76) https://www.13yarn.org.au/ For information and resources about breast cancer, you can access our website https://www.bcna.org.au/resources-over-the-festive-season/ Online Network over Christmas and New Year You can continue to connect with others with a breast cancer experience here on BCNA's Online Network (available 24/7) Mez_BCNA Kate_BCNA and Daina-BCNA will be moderating the Online Network over the closure period should you need to send a private message for urgent matters you can include all moderators in your message. To send a private message from your laptop/desktop click the envelope next to your profile picture and click on the highlighted picture below; type in the moderator’s names in the ‘recipients’. Type the body of your message and hit ‘Post Message’button: To send a message from your mobile device you will click on your profile picture and then the envelope will be on the top-right (screenshot below): Community highlights Christmas Funnies In the spirit of Christmas Funnies… Popular forum discussions You may be interested in several forum discussions that have received the most comments in December: Here we (I) go Where do I start...... what to take to hospital Lobular breast cancer just diagnosed Christmas Funnies ....... put them up here for a laugh! Community News Season Greetings from Kirsten Pilatti (aka KP) https://www.youtube.com/watch?v=zDtHJUUqWtI BCNA Celebrating 25 years We know that in another 25 years’ time, things may look ve…163ViewsSign in to react to this post0CommentsFriday Update - 8th December 2023
Welcome to December members, This may be a good time to remind ourselves and those around us that the holiday season can look different for everyone. If you’re struggling to feel those ‘festive’ feelings, please be kind to yourself. Here are some strategies from the Cancer Council to help make Christmas easier if you’re affected by cancer: 6 ways to cope with cancer this holiday season Hope you enjoy the update. Community Highlights November Activity In November the Online Network had 112 new discussions; 641 new comments and 26,216 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: Lobular breast cancer just diagnosed Creative Corner! Friday Funnies New Diagnosed SUFFERING STOPPING HORMONE TREATMENT FOR MENOPAUSE Posts by 'Category Name' November 2023 Community News BCNA News - New Board Members 16 Nov 2023 At BCNA's Annual General Meeting today, Surgical Oncologist Professor Bruce Mann retired from the Board after 9 years' service. We are so grateful to Bruce for his commitment and passion for BCNA and our purpose. We know he will continue to remain a friend of BCNA. CLICK HERE to read further. BCNA News - Time to Count People with Metastatic Breast Cancer – A Way Forward 29 Nov 2023 Finding a way to have people living with metastatic breast cancer consistently counted on our cancer registries is a step closer to reality. The Time to Count People with Metastatic Breast Cancer – A Way Forward report outlines a roadmap to collecting and reporting cancer stage and recurrence data. Read more via the link Time to Count People with Metastatic Breast Cancer - A Way Forward BCNA News – Vale Peta Murphy MP It is with much sadness that Breast Cancer Network Australia (BCNA) acknowledges the death of Peta Murphy MP. Please read the discussion https://onlinenetwork.bcna.org.au/discussion/26093/vale-peta-murphy-mp#latest You are welcome to leave your own comments / reflections. Mary Lloyd – The sneaky breast cancer I almost missed and how other can look out for it Mary Lloyd from the ABC’s Specialist reporting Team tells her personal story of a breast cancer experience and how lobular breast cancer (lobular carcinoma in situ – LCIS) is harder to detect. Her story looks at how is lobular cancer different to other types of breast cancer, and why lobular breast cancer is harder to detect on medical images. BCNA promotes breast awareness, and we encourage women to be familiar with their breasts so they can pick up changes early. If you notice a change that is unusual for you, it is important you see your doctor as soon as possible. Watch and read the full story HERE Dragons Abreast Australia (DAA) Celebrates 25 years! BCNA is proud to share a big birthday with Dragons Ab…158ViewsSign in to react to this post0CommentsFriday Update 12th October 2023
Greetings everyone, Welcome to the Thursday 'Friday Update'. We are into the swing of Breast Cancer Awareness Month here at Breast Cancer Network Australia (BCNA) and I will share several of the highlights we mention throughout the month of October. This month can bring different thoughts, feelings and reflections for many of you; please connect with the people in your life who support you (including the Online Network community). You can always reach out to the BCNA Helpline 1800 500 258. Check out our CEO Kirsten Pilatti's message about the significance of Breast Cancer Awareness Month https://youtube.com/shorts/TSg4si9iw-M?si=ARZqofcW2SFRXhKn Community Highlights September 2023 Activity During the month of September the Online Network had 68 new discussions; 430 comments and 17,832 visits to the community. Popular Forum Discussions If you have missed some of the most active discussions in September, you can check them out via the links below: IMPORTANT: BCNA's Online Network is getting a security upgrade 13th September 2023 Extensive DCIS Ice gloves - ideas needed please Treatment for post chemo soft nails Xeloda Posts by 'Category Name' September 2023 Featured Private Group 'Autism Spectrum Disorder (ASD) and Breast Cancer' Autism Spectrum Disorder (ASD) and Breast Cancer This private group was set up to connect people with Autism and a diagnosis of breast cancer. Feedback from members, is that often the additional challenges faced by someone with ASD while navigating a breast cancer diagnosis, are not always understood by all. This space will hopefully allow you to connect, support and share your experiences with others going through a similar journey. Community News Breast Cancer Awareness Month Breast Cancer Awareness Month provides the opportunity for us to draw attention to the ongoing impact of breast cancer on those diagnosed and their supporters. In our 25th year, BCNA continues to connect you with the information, resources, and support you need whether you are someone diagnosed, a family member, support person, or a health professional providing care. 'Living well, your way' A diagnosis of breast cancer looks different for everyone, and there is no one way to ‘live well’ during or following a diagnosis of breast cancer. Breast cancer affects people long after active treatment has finished. For some people, including those living with metastatic breast cancer, treatment never finishes. There are often long-term impacts of a breast cancer diagnosis. These impacts could be physical, psychosocial, or financial. It is likely that you will require different types of support at different times after your initial diagnosis of breast cancer. Living well, your way aligns to the third year of BCNA’s Policy and Advocacy Strategy, you can read more about how we use this strategy to advocate on behalf of our network&nbs…144ViewsSign in to react to this post0Comments
105Views
0Comments
