BCNA Member Survey
We are excited to be launching a national member survey for people impacted by breast cancer to better understand how you use BCNA’s services and resources. We have designed this survey in partnership with researchers from the University of Sydney and representatives from our membership groups including from our rural and regional, metastatic, LGBTIQ+ reference groups and SATT program graduates. So many things have changed since we last conducted a national survey in 2017 that informed the State of the Nation report. This survey will guide our priorities and work to ensure that we keep delivering the highest quality information and support to our members. Healthcare has also changed a lot over the last five years, especially since COVID-19. We are launching a separate survey for health professionals who deliver breast cancer care so that we can improve our engagement across the sector. Link: https://redcap.sydney.edu.au/surveys/?s=LHJDPKM8TJ3RRXLDFriday Update - 11th November 2022
Friday update 11th November 2022 Hello members, October was full of activity and events for Breast Cancer Awareness Month. Thankyou to everyone who hosted an event or got involved in any way to raise awareness. I will do a bit of a re-cap on the theme ‘Understanding My Care’ that BCNA highlighted throughout the month. Thunder and rain echoes through my home town today, so while it is warming up it doesn’t quite feel like we are heading into summer soon! Enjoy the update. Community highlights October Online Network activity In October the Online Network had 16,652 visits to the community; 116 new discussions and 597 new comments Popular forum discussions Members new and old may have missed some of the forum discussions that have been most active in September: 1. Creative Corner! 2. Lumpectomy done - margins question 3. Radiation started 4 of 25 4. Integrated doctor/oncologist in Victoria 5. DCIS Posts by ‘Category’ Name’- October 2022 Community News Understanding my care During October, Breast Cancer Network Australia (BCNA) promoted awareness of optimal breast cancer care through a campaign called Understanding My Care. Please take a moment to complete our survey about the campaign. It should only take about 5 minutes. Your opinion is important to us and helps us keep improving how we communicate important messages about breast cancer. Survey link: https://www.surveymonkey.com/r/7C5K6CC You can also check out the posts that I shared on this topic during the month of October: My Care - Understanding Best Timeframes for Treatment My Care - Understanding Supportive Care My Care - Understanding Multidisciplinary Care My Care - Understanding Informed Financial Consent My Care - Understanding Access to Clinical Trials BCNA News 13 Oct 2022 – Making metastatic breast cancer count Breast Cancer Network Australia (BCNA) announced that there are over 10,000 people living with metastatic breast cancer in Australia. This figure is only an estimate because Australia’s cancer registries are currently only mandated to report the number of people diagnosed with cancer (incidence) and how many people die from cancer (mortality). This means we currently don’t count people who are living with metastatic breast cancer. Read the full news item HERE and Download issues paper: Making metastatic breast cancer count BCNA News 1 Nov 2022 – Medicare rebate for breast MRI The eligibility for a subsidised MRI for people who don’t have symptoms but have a high risk of developing breast cancer has expanded. This eligibility has changed from under 50 to under 60 years, meaning more people could now be eligible. Your GP will determine if you are at high risk and meet the Medicare criteria for an MRI. We are aware not everyone qualifies for this subsidy, and that’s why BCNA continues to advocate for greater access to subsided treatment and care. If breast cancer is found early, there are more treatment options and a better chance for survival. BCNA encourages you to talk to your GP about your breast cancer risk. For more information and to check your eligibility visit: https://bit.ly/MedicareMRI BCNA visits Rockhampton! BCNA hosted an Information Forum in Rockhampton for people living with breast cancer and their supporters. The Information Forum covered 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. You can read more about the local Rockhampton community groups and the speak biographies HERE The Beacon – December (Preview) The December edition of The Beacon is currently in-progress; I have the inside word on several topic/stories that will be included: * Ask the expert: Genetics and the link to breast cancer Expert: Associate Professor Yoland Antill, Medical Oncologist and Cancer Genetics Specialist. This story covers how your family members might know they are at risk, what genes are associated with breast cancer, how to get a genetic test including the cost, what it involves, and what a positive result means. * Transitioning back into work after breast cancer treatment Expert: Jo Lewis, Occupational Therapist working as a Clinical Program Consultant with CancerAid and Associate Lecturer at the University of Sydney. This story explores the advice from Jo about how you can take charge of returning to work, including talking about your experience, planning your return, how your employer can help you and what to do if you return to work and you don’t cope. * Planning for the future: Advance care planning Expert: Sonia Fulton, Deputy Chief Medical Officer at the Peter MacCallum Cancer Centre. Sonia is a firm advocate for everyone preparing an advance care plan so they maintain control over the medical treatment they receive if they lose capacity. She says, ‘Having an advance care plan means that even if you’re very unwell and can't verbalise your wishes, you will still be heard,’ Sonia says. ‘It's not like a will, which is a plan for what happens after you die. An advanced care plan is about what happens to you while you are still alive. It ensures doctors can make treatment decisions in line with your preferences.’ *Breast cancer inspired me to make changes to my lifestyle Member: Kath was diagnosed with locally advanced triple negative breast cancer in 2019 after feeling a lump in the shower. She often used alcohol to cope with life’s challenges, however realised that healing was more important after her diagnosis. She remained alcohol free and made changes to other lifestyle choices she had control over, including her exercise, diet and stress levels. She says that by taking control, she’s living a life aligned with her purpose and values. *Being a breast care nurse in a regional Australia Donna Wellington – Breast Care Nurse. Based in Rockhampton Central Queensland, Donna is the only full-time breast care nurse employed by Central Queensland Hospital and Health Service, which covers an area of 114,000 square kilometres, including Longreach, a 10-hour drive west. The story explores some of the key roles of her job and also the key benefits of breast care nurses Webcasts/Podcasts Food and Movement When Living with Metastatic Breast Cancer - Wednesday 23 November 7:00 – 8:30pm AEDT In a recent Issues Paper, Making Metastatic Breast Cancer Count, BCNA used modelling to estimate that there are currently over 10,000 Australians living with metastatic breast cancer. Although those who are diagnosed with metastatic breast cancer don’t require a specific diet, a healthy, nutritionally balanced diet and regular exercise can help maintain a sense of physical and mental wellbeing and can improve your quality of life. Register now via the following link: https://bcna.live/foodmovementwebcast Did you miss ‘Men and Breast Cancer – Treatment, Managing Side Effects and Finding Support’? In 2022, it is predicted that 212 men will be diagnosed with breast cancer. This diagnosis can be particularly confronting for men and may bring many different challenges, including difficulty finding tailored information, feelings of isolation and being unsure who you can speak to. It is important for you to know there is a range of support available to you. You can watch the recorded session via the YouTube LINK The session explored hormone-blocking treatments for breast cancer and how to manage side effects, provide information about lymphoedema and the treatment and care available and learn about what resources and support are available to you. Survey If you have time, please visit the recent discussion created by our Policy & Advocacy Project Manager (Siobhan) Participate in a research survey to assess the quality of Online Network . BCNA is committed to making improvements to the online network on a regular basis and values user input. Take care and if you have feedback or any concerns while online, please contact one of the moderators - @Jenny_BCNA @Carissa_BCNA @Pat_BCNA @Mez_BCNA If you need to speak with someone regarding your concern, please call 1800 500 258 alternatively, you can email contact@bcna.org.au Take care, The mod team – Mez, Carissa, Jenny, & Pat “Gratitude is a quality similar to electricity: it must be produced and discharged and used up in order to exist at all.” – William Faulkner
