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 Redback338ViewsSign in to react to this post1CommentBallarat 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 care299ViewsSign in to react to this post12CommentsRegional 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_hURU9VU1NLNjlTWTlORFJMTTNHTlVFQlE5Qi4u225ViewsSign in to react to this post8Comments
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.214ViewsSign in to react to this post8CommentsFriday Update - 10th March 2023
Hello Online Network members, Hope you are enjoying a lovely Autumn day if you live in Melbourne; it truly is a beautiful season. Reflecting on some of the Online Network’s February activity, it was nice to see that the most activity has been visible in ‘Social Groups’ (private groups). If you have not checked out the variety of groups that may be relevant to your needs, please head to the link Groups Take care and enjoy. Community Highlights Revised Group The private PALB2 Gene Group has been changed to Hereditary Genetic Mutations and Breast Cancer to encompass individuals affected by any genetic mutation that may relate to an increased risk of brest cancer. February 2023 Activity In February the Online Network had 93 new discussions; 596 new comments and 15,032 visits to the community Popular Forum Discussions If you have missed some of the most active discussions in the past few weeks, you can check them out below: New Group Proposal - No Reconstruction post Breast Cancer Surgery What Care Givers do ...... Not doing so well Letrozole - Fracture in spine Mastectomy Posts by 'Category Name' February 2023 Community News BCNA News – 07 March 2023 More research is need into fear of breast cancer recurrence among Aboriginal and Torres Strait Islander women, participants at a Breast Cancer Network Australia (BCNA) Think Tank heard last week BCNA part of first ever research into fear of breast cancer recurrence in Aboriginal and Torres Strait Islander women BCNA News – 02 March 2023 As Australia’s leading voice for people affected bu breast cancer, BCNA is proud its Director of Policy, Advocacy and Support Services, Vicki Durston, has been elected president of the General Assembly of the ABC Alliance BCNA’s Director Policy, Advocacy and Support Services elected to international breast cancer body International Women's Day - 8th March 2023 Thankyou to those who supported or participated in the Carman's Fun Run last Sunday. BCNA are pleased to announced that with the work of fundraisers and event partners, we were able to raise over $255,000 to help support of Australians affected by breast cancer. World Lymphoedema Day – 6th March 2023 On World Lymphoedema Awareness Day BCNA is calling for improved equity of access to treatments for lymphoedema. Lymphoedema, which is swelling caused by damage to the lymph nodes, can affect many people following treatment for breast cancer. It is a lifelong condition that can require wearing expensive compression garments to manage the symptoms. The financial burden of a breast cancer diagnosis is already significant without the ongoing costs to manage and treat lymphoedema. All states and territories run programs that subsidise lymphoedema compression garments, and BCNA is calling for further investment to make these programs even more accessible in the long term. BCNA celebrates advocates like Monique Bareham who says early diagnosis followed by evidence-based care is fundamental to living well with lymphoedema. ‘Compression is key to managing swelling and access to garments is essential.’ For more information on lymphoedema compression garment programs in your state/territory, see here: https://www.lymphoedema.org.au/.../compression-garment.../ Cancer Survivorship Conference The sixth national Cancer Survivorship Conference has been underway in Adelaide Convention Centre today and yesterday, Hosted by the Clinical Oncology Society of Australia - COSA and Flinders University. There were some great speakers at the conference and BCNA held an exhibit there to engage with health professionals, researchers and consumers. A couple of my colleagues came across some practical information that Online Network members may find of interest. They met Rebecca who has gone through her own breast cancer experience and works for the organisation ‘Moo Goo’. Many of you know that the Moo Goo creams have been helpful for people during their radiation treatment and here is the link from our service finder if you would like to find out more MooGoo Prophylactic Measures and Skin Care During Treatment They also found sexual health physician Tonia Mezinni highly informative and engaging. You can check out further information about her via the link https://drtoniamezzini.com.au/ . We also have added another business to the BCNA service finder Olive & Bee This is a natural lubricant created by Claire Osterstock (Physiotherapist) in Adelaide who assist men and women with pelvic pain. The product was handed out after Tonia Mezinni’s session. BCNA presented three of its major projects on detailed posters: Surviving Breast Reconstruction: What Information Would Help Women; Making Metastatic Breast Cancer Count, and Out With Cancer: LGBTQI Cancer Survivorship and Care. Forums / Webcasts Warrnambool Information Forum 28th March 2023 BCNA have announced another face-to-face forum coming in March. You can see the latest discussion here through the Online Network: https://onlinenetwork.bcna.org.au/discussion/25352/upcoming-event-warrnambool-information-forum-28-march#latest Port Lincoln Information Forum 7th March 2023 – Recap to come soon The Port Lincoln forum was held this week and I look forward to sharing more details and recap of the event in the next update Books/ Movies / TV Series/ Documentaries Breast Cancer Now - The Chat – The UK’s first group messaging series is live Breast Cancer Now have created a new series called ‘The Chat’. Aimed at encouraging us to question how we speak about breast cancer, highlighting the importance of honesty and real talk in society that typically does not like to talk about. Inspired by real cancer stories – check it out Breast Cancer Now | The Chat That's all for this week and if you have any content you would like to see in the updates please feel free to share with me and I will try my best. @Jenny_BCNA @Carissa_BCNA @Pat_BCNA @Mez_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 [email protected] The mod team - Mez, Carissa, Jenny and Pat "She stood in the storm, & when the wind did not blow her way, she adjusted her sails." - Elizabeth Edwards199ViewsSign in to react to this post3CommentsFriday 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 [email protected] The mod team - Mez, Jenny, Pat, Denise and Risha "We are only as strong as we are united, as weak as we are divided”164ViewsSign in to react to this post3CommentsFriday 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 [email protected] Take care, The mod team – Mez, Carissa, Jenny, Anna & Pat “As soon as healing takes place, go out and heal somebody else”. – Maya Angelou157ViewsSign in to react to this post0CommentsNavigating 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-thread139ViewsSign in to react to this post1CommentLaunceston 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.134ViewsSign in to react to this post0Comments
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