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 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 very different. We anticipate further advances in breast cancer prevention, improved services to support those living with and beyond breast cancer, and new innovative ways that we access health information. So where do we see BCNA in 25 years’ time? ‘My granddaughters will be reaching an age where breast cancer may come into their lives. If breast cancer is still here, if it hasn't been eradicated or if we haven't found a way to prevent it from happening, then I would hope that BCNA is still a haven that can be relied upon.’ - Lyn Swinburne AO, BCNA Founder ‘I want to see everyone, not just those with the strongest voices, getting the best care. I also want BCNA to continue to help those diagnosed to find each other and to feel a sense of shared understanding through the connections we foster’. – Kirsten Pilatti, BCNA CEO You can read more BCNA's 25-year story CLICK HERE Magnetic Resonance Imaging (MRI) - PROSPECT Study BCNA welcomes new Australian research which has found breast magnetic resonance imaging (MRI) prior to breast surgery, may be able to identify patients who can safely avoid radiotherapy. This could lead to less treatment, fewer side effects and save thousands of dollars in healthcare costs. The PROSPECT study – recently presented at the San Antonio Breast Cancer Conference and published in @the_lancet_ – also found participants who did not have radiotherapy, had substantially lower rates of fear of breast cancer recurrence and better quality of life compared to those who did. The researchers, led by Professor Bruce Mann, also found patients have a positive perception about tailored care, lower treatment burden and trust in clinicians. Read more about the study led by Professor Bruce Mann via the LINK Travelling and Airport Security Travelling through airport security with a breast prosthesis this holiday season? Here's what you need to know. With the busy travel period coming up, BCNA is still hearing that some people travelling through airport security wearing a breast prosthesis or compression bra are having distressing experiences. If you feel comfortable, let airport staff know you are wearing a breast prosthesis or compression bra before passing through security. It can also be helpful to carry a letter from your doctor. Airport staff may organise another imaging scan or a pat down. If this happens you must be treated respectfully. You can request to be screened in a private area and by an officer of the same gender. Your prosthesis or bra should never be touched or removed. BCNA is now working together with all major Australian airports to ensure their staff are well informed and trained to ensure all people with prostheses are treated respectfully. For more information, call our Helpline on 1800 500 258 or visit the LINK Otis Foundation Perhaps a Christmas gift for yourself or someone else affect by breast cancer. Otis Foundation is a national charity gifting retreat accommodation to people experiencing breast cancer and their loved ones. They will take enquiries from anyone who has experienced breast cancer and feel they would benefit from a stay. http://www.otisfoundation.org.au/ BCNA Forums/Webcasts Mission Beach Information Forum Recording - Now Available! CLICK HERE to access recording. The Information Forum covered topics including: current and emerging treatments sexual health strategies to enhance physical and emotional wellbeing. We heard from two BCNA members, Angela and Sharon, about their lived experience. Members were also advised of local support as well as learning more about BCNA’s services and resources. Guest speakers included: Dr Michelle White, Medical Oncologist Chloe Oliver, Clinical Psychologist Dr Tonia Mezzini, Sexual Health Physician Jody Spicer, Exercise Physiologist Maebh Coleman, Physiotherapist Jessica Chenery, Metastatic Breast Care Nurse Kate Tracey, Breast Care Nurse. Upcoming Webcast! Stay tuned for the upcoming webcast related to "Persistent pain after treatment" on the 7th of February 2024 (Registration link will be posted in events through the Online Network soon). Upcoming Information Forum! Stay tuned for the upcoming BCNA Information forum to be held in Murray Bridge SA on the 6th of March 2024 (Registration link will be posted in events through the Online Network soon) Books/Movies/TV Series/Documentaries We will round out this week's Friday Update with a Christmas movie recommendation, it is a family friendly movie and very sweet: Or... if you are not feeling Christmas this year there is always 'The Grinch who stole Christmas' ;) BCNA and the moderating team wish you a very restful, safe and happy festive season. Hope to connect with you all again in 2024! 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 "There are two ways of spreading light: to be the candle or the mirror that reflects it." - Edith Wharton
