Living well with breast cancer online Information Forum
BCNA will be hosting an online Information Forum for people living with breast cancer and their supporters - Living well with breast cancer online Information Forum (bcna.org.au) The Information Forum will cover a range of topics including the latest in breast cancer treatment, managing your emotional wellbeing after a breast cancer diagnosis, and how you can live well during treatment and beyond. It will also be an opportunity to hear about what BCNA does and the services and resources we have available to support you. Please note that this forum will explore the insights and perspectives of people affected by breast cancer living in Wagga Wagga, with some of the content tailored to the local support available in and around this particular area. Guest speakers will include Medical Oncologist Dr Belinda Keily, Wagga Wagga Breast Care Nurses Sue Munroe and Monica Jessop, Director Supportive Care Services at Cancer Council Tasmania Sarah De Jonge, Exercise Physiologist Samantha Jones, and Physiotherapist and Lymphoedema Therapist Stuart McKenzie. There will be three information sessions – one for people with early breast cancer, one for people with metastatic breast cancer and one about maintaining health and wellbeing during a breast cancer diagnosis and beyond. Living well with early breast cancer Date: Monday 29 August Time: 6.00pm - 8.15pm AEST Registration: Please register via Redback Living well with metastatic breast cancer Date: Tuesday 30 August Time: 6.00pm - 8.15pm AEST Registration: Please register via Redback Living well with breast cancer: Health and wellbeing Date: Thursday 8 September Time: 6.00pm - 8.15pm AEST Registration: Please register via Redback
Victorian event - Cancer Clinical Trials: the science, the stories
The Victorian Comprehensive Cancer Center (VCCC) is holding a public event on Monday 21 May titled Cancer Clinical Trials: the science, the stories. The event aligns with International Clinical Trials Day, 20 May. What are the challenges and rewards of participating in a cancer clinical trial? Clinical trials are a critical bridge between a promising idea and real patient care. Hear patients and experts explain the process, benefits, and the progress being made in Victoria. Date: Monday 21 May Time: 5:30-7:30pm Location: VCCC Level 7, Lecture Theatre B, 305 Grattan Street, Melbourne, Vic 3000 Places are limited, register: https://www.viccompcancerctr.org.au/events/cancer-clinical-trials-the-science-the-stories/#undefined For those who can't make the event or live interstate slides from the evening will be made available after the event on the VCCC website www.viccompcancerctr.org.Regional and Rural Information forums - We want your feedback!
The below post was recently added to the private group Living in Regional, Rural and Remote areas . If you are not a member of this group and live rural, regional or remote, please consider joining. (Refer to the Monash Modified Model (MMM) that classifies locations according to geographical remoteness via the link https://www.health.gov.au/resources/publications/modified-monash-model-fact-sheet Hi Members, BCNA will be delivering information forums to regional, rural and remote communities, more details on the locations and dates will be shared soon. Traditionally these have been delivered as full day events from 9.30-3.00. We acknowledge the current cost of living crisis, work and personal commitments might make it challenging for people to attend a whole day event. So we are hoping to get a better understanding on preferred timings from our members. If you could please take the time to complete this short survey to help with the planning of the upcoming forums. https://forms.office.com/Pages/ResponsePage.aspx?id=dgJVk0E5rkyacWRewHkFZW92LAal_5RAn6S9wZSqa_hURU9VU1NLNjlTWTlORFJMTTNHTlVFQlE5Qi4uFriday 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 - 13th May 2022
Friday Update 13th May 2022 Hello members As mentioned in the last update, BCNA are getting back to face-to-face forums. Join us in Ballarat Thursday 26th May as we host a breakfast for people living with metastatic breast cancer and an information forum for people with early breast cancer (I will share the link and other forums to look out for in this update). My colleague Amelia who does the monthly round-ups for you, has also given me some insight into the topics and stories to expect the June edition of The Beacon. Hope you enjoy the update. Community highlights Popular forum discussions Members new and old may have missed some of the forum discussions that have been most active the past fortnight: 1. Waiting game 2. Everything seems to be wrong 3. Post surgery 4. to biopsy or not Private ‘Groups’ in the Online Network For our new members to the online network, are you aware of the private groups available to join? https://onlinenetwork.bcna.org.au/groups/ There are various groups that may be applicable to your situation and where you may like to reach out to others going through similar journeys. Simply click on the ‘join’ button and one of the moderators will review your request (Please note: you have to be a registered member of the online network to join groups) Posts by ‘Category Name’ 29 April – 13 May 2022 Community News BCNA My Journey article updates There have been some updates on My Journey articles 'Exercise: why, what and how?' and ‘Tips to get started with exercise and stay motivated’ that incorporates the information from the ‘booklet’ on our website. BCNA News & Events – REMINDER Ballarat Information Forum and Breakfast in two weeks! Metastatic breast cancer breakfast Date: Thursday 26 May 2022 Time: 7.15am for 7.30am start - 9.00am Location: Mercure Ballarat, 613 Main Road, Golden Point Hear from medical oncologist Belinda Yeo on the latest in treatment and care, and clinical psychologist Dr Charlotte Tottman on managing the emotional challenges of living with metastatic breast cancer. Register yourself and a guest for the breakfast by Wednesday 18 May via Eventbrite. Living well with early breast cancer Information forum Date: Thursday 26 May Time: 9.00am for 9.30am start - 3.45pm Location: Mercure Ballarat, 613 Main Road, Golden Point Hear from medical oncologist Belinda Yeo, clinical psychologist Dr Charlotte Tottman, breast care nurses Leanne Storer and Joylene Fletcher and more. The forum will explore topics including the latest treatments for early breast cancer, managing common side effects of treatment, living well during and after treatment, and coping with the emotional impact of breast cancer. Register yourself and a guest for the Ballarat Information Forum by Wednesday 18 May via Eventbrite. Upcoming BCNA Forums More details to come regarding final dates/venues for the below forums, however you may like to bookmark them in your calendar: · Launceston TAS – Late June 2022 · Port Lincoln SA – Late July 2022 BCNA News - Calling for change ahead of the 2022 federal election The 2022 federal election presents an opportunity for BCNA to advocate for improvements to Australia’s healthcare system and health policies in the interests of people diagnosed with breast cancer. Read BCNA’s six election recommendations via link Election Manifesto Pink Bun Campaign Continues Still available until 18 May, Bakers Delight will be donating 100 per cent from ALL Fun Bun sales to BCNA so we can continue to support Australians affected by breast cancer. You can read more about the campaign and the stories of Megan, Samantha and Nicholas HERE The Beacon - June edition As the June edition of The Beacon is due to be finalised soon, I have the inside word on several topic/stories that will be included: · Partner Support Member/Expert: we speak to two women, Cindy and Ros and their supporters to find out what they found helped and what didn’t. Professor Jane Turner shares her tips of some of the best ways supports can help a loved one diagnosed with breast cancer. · Mindfulness Ask the Expert Story: Professor Craig Hassed answers questions including what mindfulness is, how people can practice mindfulness, how it enhances wellbeing, how mindfulness could help someone who has been diagnosed with breast cancer, how to encourage people to get into mindfulness and effective techniques. Member Story: Iris Bar shares her own experience with mindfulness practice after being diagnosed with metastatic breast cancer six years ago. · Reducing the financial and emotional burden of breast cancer Member story: Lisa shares her story and how she was thousands of dollars out of pocket and didn’t feel like she had the right information. · Sex and intimacy after breast cancer Expert Story: Janine Porter answers questions regarding common side effects of breast cancer treatments that may affect sexual health, how the side effects may affect wellbeing, tips to improve intimate relations and who you can speak to if you have concerns. · Busting nutrition myths Expert Story: Lauren Atkins her insights on the impact of nutrition before and after a breast cancer diagnosis and where you can seek nutritional advice, and bust some myths surrounding sugar, low carb diets, organic food and dairy Webcasts Next week! – Webcast: Managing the long-term side effects of breast cancer treatment Tuesday 17 May 7:00pm-8:30pm (AEST), we will hear from medical oncologist Professor Bogda Kokzwara and BCNA Consumer Representative Naveena Nekkalapudi. Bodga is a senior staff specialist at the Flinders Centre for Innovation in Cancer where she developed a Survivorship Program and is the Cancer Council SA’s Clinical Investigator for chronic disease management after cancer. Naveena was diagnosed with early breast cancer in 2014 and will discuss the long-term side effects she experiences, her strategies to manage them, and her advice for others. Register for the webcast now Ask the Expert: Managing cognitive changes related to breast cancer treatments with Jo Lewis Tuesday 24 May 7:00pm-8:15pm (AEST), We we will hear from occupational therapist Jo Lewis and BCNA member Kate Keogh Murray. Jo has over 20 years’ clinical experience as an occupational therapist and her clinical work specialises in workplace rehabilitation and work health and safety. She is currently completing her PhD, investigating how cognitive changes experienced by women with breast cancer impact on return to work. Kate was diagnosed with early breast cancer in 2017 and is currently experiencing cognitive changes due to her breast cancer treatment and prescription medication. Register for the event here Books / Movies/ TV Series/ Documentaries The June edition of The Beacon introduces Professor Craig Hassed, an internationally recognised mindfulness expert and 2019 Order of Australia recipient for services to medicine. He has published 14 books and also featured in documentaries such as ‘The Connection’. If you haven’t watched ‘The Connection’ you may like to check it out https://www.theconnection.tv/ 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 “As soon as healing takes place, go out and heal somebody else”. – Maya AngelouBallarat 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 careNavigating 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-threadLaunceston Information Forum - June 2022
Good afternoon everyone! 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. You will hear from a number of guest speakers, including medical oncologist and supportive care physician Dr Ben Forster on the latest in treatment and care, and oncology senior social worker Dr Carrie Lethborg on managing the challenges of living with breast cancer. See information and links to register below. Please note that to attend these events, you must be double vaccinated and show your vaccination certificate upon arrival. Metastatic breast cancer Information Forum Date: Wednesday 22 June 2022 Time: 9.00am for 9.30am start – 3.30pm Location: Launceston Conference Centre, 50 Glen Dhu Street, South Launceston Register yourself and a guest for the Information Forum by Wednesday 15 June via Eventbrite. Early breast cancer Information Forum Date: Wednesday 22 June 2022 Time: 9.00am for 9.30am start - 3.30pm Location: Launceston Conference Centre, 50 Glen Dhu Street, South Launceston Register yourself and a guest for the Information Forum by Wednesday 15 June via Eventbrite.Friday Update - 5th August 2022
Friday Update 5th August 2022 Hello everyone, Hope you are keeping safe and warm during the windy, wet weather many are experiencing throughout different parts of Australia. I still managed to capture the gorgeous sun setting as I left the BCNA office in Camberwell earlier in the week: In this update I have a sneak peak of the content coming up in September’s issue of The Beacon, as well as a reminder of upcoming events in August. Community highlights July Online Network activity In July the Online Network had 11,157 visits to the community; 92 new discussions and 445 new comments. Living with metastatic breast cancer group We have an upcoming webcast focusing on metastatic breast cancer (details in this update). Therefore, it is a timely reminder about the online network private group Living with metastatic breast cancer . This is a private group for people living with metastatic breast cancer (also called secondary and advanced breast cancer). The group is a safe space to connect with others for peer support, hope and encouragement. Popular forum discussions Members new and old may have missed some of the forum discussions that have been most active the past fortnight: 1. Feeling low and guilty 2. Round 2 ?? 3. Cancer was easy Tamoxifen is killing my life 4. Scalp cooling - should I stop, done 11 chemos and 5 to go Posts by ‘Category’ Name’ 22 Jul 22 - 5 Aug 22 Community News BCNA My Journey – Updates Last week we updated the information about COVID-19 in My Journey. This includes information about winter booster vaccinations. There is also a new article COVID-19 oral antiviral treatments. Oral antiviral medication for the treatment of COVID-19 helps reduce the risk of developing severe illness and therefore help prevent the need for hospitalisation. It is only available under the PBS if certain criteria are met, including people with moderate to severe immunosuppression such as from chemotherapy. BCNA Wagga Wagga – Online Forum The Wagga Wagga information forum due to be held as a face-to-face event in August will now be a digital event (splitting the event across 29 Aug for Early Breast Cancer and 30 Aug for Metastatic Breast Cancer and 8 Sept for a combined session). This digital event content will be focused on Wagga Wagga, however all BCNA members will be able to tune into the events. Stay tuned for further details to be released on the BCNA website in the coming weeks (The decision to switch to a digital event is due to the expected peak in COVID-19 cases in August and September, and BCNA do not want to place the local community at unnecessary risk or put the health workforce under further strain). BCNA – The Beacon (Preview) As the September edition of The Beacon is currently in-progress, I have the inside word on several topic/stories that will be included: *Life Changing impact of Herceptin Member story: we speak to Jenny who shares her story of living with metastatic breast cancer for the last 10 years and Herceptin recommended as part of her treatment. The chemotherapy, a targeted treatment for women with HER2-positive breast cancer, had only recently been added to the pharmaceutical benefits scheme after BCNA’s advocacy to make the life-saving treatment more affordable. *Trialling a new treatment for triple negative breast cancer Member story: June shares her story of metastatic triple negative breast cancer (TNBC) and the astounding results she’s had from a new chemotherapy drug, Trodelvy. After five months of treatment, her tumours have become mostly inactive, and she’s now enjoying a long-awaited trip overseas to visit family in North America. We hear about how she heard about the clinical trial and drug and how it has empowered her to live her best life. *Awareness for men and breast cancer Member story: BCNA interviews Harry, who speaks about raising awareness of men’s breast cancer and how he found out about BCNA *Ask the Expert – Managing long term side effects of breast cancer treatments Member/Expert: On from the successful webcast in May, BCNA asked Bodga and Naveena additional questions that came through the question box on the night of the event including fatigue, hot flushes, how to get a good nights sleep, emotions of side effects and how to manage bone and joint pain. BCNA’s Pink Tradie is back! https://youtu.be/cTvd7Xih7a8 During August and September, we’re calling on tradies across Australia to wear pink, by pulling on a Pink Tradie beanie and a pair of BCNA pink socks, to support the 20,640 Australians expected to be diagnosed with breast cancer this year. CLICK HERE to read more Giving cancer patients more of a voice in their treatment A new study conducted at Flinders University’s Clinical Cancer Epidemiology Lab on breast cancer has found that a patient’s perspectives on their wellbeing can be better at predicting treatment and symptoms than clinician-based tools. Read the full article HERE Webcasts - Our metastatic breast cancer webcast is happening soon! In this webcast, we will hear from Medical Oncologist Professor Fran Boyle, Metastatic Breast Care Nurse Alice Gibson, BCNA Consumer Representative Ros Casperson and BCNA member Cybele Orton. Fran practices at the Mater Hospital in Sydney and is a professor at Sydney Medical School. Her research focuses on breast cancer treatment, supportive care and health professional communication. Alice has been a breast care nurse since 2018 and supports her patients and their families as they navigate the complexities that come with their diagnosis. Ros is a young mum who has lived with metastatic breast cancer for over five years and Cybele was diagnosed with early breast cancer in 2010. Genetic testing showed Cybele had the BRCA2 gene mutation, prompting her to have a double mastectomy and hormone-blocking treatment. Then, in 2017 she was diagnosed with metastatic breast cancer. The webcast will address 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 Register now via the following link: https://bit.ly/metastatic-webcast-bcna 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 Books/Movies/TV Series/ Documentaries It's all just rock and roll...: A Terrifically Truthful Tale of one Girl's Bust Up with Breast Cancer An inspirational story about love, life, happiness and hair. A true story about author Alex Jagger’s breast cancer journey. She tells the story in real time with humour, a blunt Yorkshire honesty and breath-taking courage. What really happens when you're trying to keep your head (and your hair) when the rest of the world is going mad. And what really happens when you finally find your very own sunshine. Hope you have enjoyed the update 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 alternatively, you can email contact@bcna.org.au Take care, The mod team – Mez, Carissa, Jenny, & Pat “There is no path to peace; Peace is the path.” – Mahatma Gandhi
