Share your views: Information and support needs of people following treatment of breast cancer
Hi everyone, Erana from BCNA here! I’d like to invite you to participate in a research study opportunity led by James Cook University. Please see details below. If you can't access the QR code you can also follow this link Qualtrics Survey | Qualtrics Experience Management. If you have any questions or concerns regarding this research, please contact the research lead Tracey Ahern at tracey.ahern@jcu.edu.au This study has been approved by the James Cook University Australia Human Research Ethics Committee (#H9326).
Free BCNA Information Forum in Murray Bridge, SA
We are heading to Murray Bridge, South Australia as part of our national Information Forum series. We are bringing leading experts to the local community to provide insights on a range of breast cancer topics. We extend an invitation to anyone located in or around Murray Bridge to join us on Wednesday 6 March for this fantastic day full of information and getting to connect with others in the area! This event will be both in-person and online. The Information Forum is for anyone who has recently been diagnosed with breast cancer, who may be living with or after a breast cancer diagnosis and supporters. Register here! We are excited to announce a leading cancer psychologist from South Australia will be joining us. With more presenters to be announced soon! Dr Charlotte Tottman, Clinical Psychologist Dr Tottman specialises in the treatment of cancer-related distress. Charlotte consults privately treating cancer patients and their family members and carers. Charlotte has her own cancer story. Several years after establishing her private practice in psycho oncology, she herself was diagnosed with breast cancer. If you are unable to attend in person, you can still join us online! When registering, select ‘Information Forum – Attending Virtually’. The online session will be delivered via Zoom, and you will receive the access link one day before the event. There will be two simultaneous 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 you would like to attend. Event details: Date: Wednesday 6 March Time: 9.00am for 9.30am start – 3.00pm Refreshments will be served on arrival from 9.00am and a light lunch will be provided. Location: Bridgeport Hotel, 2 Bridge St, Murray Bridge Registration: https://www.eventbrite.com.au/e/bcna-murray-bridge-information-forum-2024-registration-779739320297 RSVP: Please RSVP by Wednesday February 28 If you have any questions, please email events@bcna.org.au or comment below.Friday 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 Abreast Australia (DAA). Like us, DAA turned 25 this year. And, like us, DAA promotes the benefits of exercise – especially after a breast cancer diagnosis. Dragon boating is a great opportunity for those living with and beyond breast cancer to get back into exercise – pick up a paddle, have fun, and connect with others in a friendly and supportive environment. Interested in learning more? To join a dragon boating club or get involved in events, visit DAA’s website Click here to learn more about the benefits of exercise post-treatment on BCNA’s newly refreshed website. Shop BCNA Charity Christmas Cards - Hello Sunday Each year @hellosundaystore produce a beautiful range of Christmas cards just for BCNA. Designed by Australian and international artists, the cards are available in packs of 10 and are presented in a premium wallet featuring your chosen design. Hello Sunday donate 10 per cent of the wholesale price to BCNA. To buy your 10-pack of Christmas cards visit the link in bio. T&Cs apply https://hellosunday.com/collections/bcna-charity-christmas-cards BCNA Forums/Webcasts 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) Coffs Harbour Information Forum Recording now available! CLICK HERE to access recording The forum had both early breast cancer and metastatic breast cancer streams, and speakers for this forum included: · Dr. Michelle White, Medical Oncologist · Dr. Carrie Lethborg, Oncology Social Worker · Hugh Campbell, Exercise Physiologist (Masters in Oncology Exercise) · Lee Millard-Newton, lymphoedema accredited therapist (ALA), Registered Nurse · Jane Kelly, local Breast Care Nurse · Rob Brangwin, local Social Worker Books/Movies/TV Series/Documentaries This week I thought it was timely to include several resources that Peta Murphy was happy for BCNA to continue to share. Thankyou Peta for your voice. Upfront About Breast Cancer Ep#27 - Vulnerability and strength - Peta Murphy on breast cancer Dear Peta - a personal story https://youtu.be/-Hku5PtYzbk?si=yTZYA9IXYrTvfsKL Take care everyone and if you have any questions or feedback please message one of our Online Network moderators below: @Pat_BCNA @Mez_BCNA , @Risha_BCNA, @Denise_BCNA, @Daina-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.auBCNA Information Forum - recordings available soon
Hi everyone, We are holding an Information Forum in Mission Beach on Tuesday 24 October, 9.00am - 3.00pm. This will be our last in-person Information Forum for 2023. The forum will also take place online, with sessions occurring in our main presentation room being shared live on Zoom. During the event, you will hear from - Those with a lived experience of breast cancer Medical Oncologist, Dr Michelle White Clinical Psychologist, Chloe Oliver Sexual Health Physician, Dr Tonia Mezzini Exercise Physiologist, Jody Spicer Physiotherapist, Maebh Coleman Deirdre Maunsell, Breast Care Nurse We will cover current and emerging treatments, sexual health, strategies to enhance physical and emotional wellbeing and share local services and support. Attendees will have the opportunity to ask questions and meet others in the local Mission Beach community. You can register to attend either in-person or online by clicking here. The presentations will be made available to view on-demand following the Information Forum but we would love to see you on the day, whether that be in-person or via Zoom. Please feel free to share the registration link with friends and family. If you have any questions, don't hesitate to post them below. Many thanks, @Carissa_BCNAFriday Update - 1st September 2023
Welcome to spring everyone! It feels like Field of Women has flown by us, however I would love to provide a recap on the wonderful day that it was. We also have Policy & Advocacy news in relation to a new drug recommended on the Pharmaceutical Benefits Scheme (PBS); Additionally, we have information on the 60-day prescriptions of the PBS medicines. Please share your own Field of Women photos! We would love to see them (If you are happy to share). Online Network Housekeeping: Several members have advised that sometimes emails from the Online Network (eg. notification emails) cannot be found in their Inbox. These messages will end up in your 'Junk' or 'Spam' folder, therefore it is a good idea to check those folders occasionally. Typically if you right click on the email and mark it as 'not junk' it will give you an option to 'Always trust this email' 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: Totally confused after seeking second opinion need to connect chemo question please? Joining the shitty titty club... Extreme weakness! Posts by 'Category Name' 12 August - 31 August 2023 Featured Private Group - 'Triple Negative Breast Cancer (TNBC)' Created only last month, the new Triple Negative Breast Cancer (TNBC) private group aims to connect together individuals who are diagnosed with triple negative breast cancer (TNBC). Around 15 per cent of people with early breast cancer will have a sub-type called triple negative breast cancer (TNBC). TNBC is a type of breast cancer that does not have any of the three receptors commonly found on breast cancer cells – the oestrogen, progesterone and HER2 receptors. This means they don't respond to treatments that block these receptors. TNBC generally respond well to chemotherapy. Read more via the My Journey article Triple negative breast cancer Community News BCNA News 22 August 2023 – BCNA celebrates recent PBAC decisions Breast Cancer Network Australia (BCNA) has welcomed a decision to recommend a crucial drug to treat early-stage triple negative breast cancer for a government subsidy CLICK HERE to read more BCNA News 01 September 2023 – 60-day dispensing prescriptions of PBS medicines Today BCNA welcomes the first day of 60-day dispensing for certain medications. This will make medicines cheaper for people living with chronic disease, including those with breast cancer. Although not in the first tranche, we look forward to hormone-blocking therapies used to treat some types of breast cancer being included in future rollouts of the program. Read our media release here. This morning, Federal Health Minister Mark Butler talks to ABC RN Breakfast about the changes. You can listen to the interview titled: 'Scare campaigns complete rubbish': 60-day pharmacy scripts introduced' here BCNA Social Post - Asking for a second opinion This is such a common topic and question we hear on the Helpline, therefore I thought I would share the social post here in the Friday update as well: We are often asked if it’s OK to get a second opinion from another health professional – whether that’s an oncologist, surgeon, GP or other health professional. Some people tell us they don’t want to offend their health professional or may not know how to go about requesting a second opinion. While you may initially be referred to a particular health professional, you do not need to stay with them. If you are unhappy about who you have been referred to, or just want to speak to someone else, it’s a good idea to seek a second opinion. When telling your health professional that you'd like a second opinion, be upfront and direct. Most will welcome a second opinion – they may even suggest it themselves. Feel free to share your experiences in the comments below. For more information on getting a second opinion: https://www.bcna.org.au/understandi.../your-medical-team/. Daily Mail – Major change coming to telehealth appointments from today Telehealth appointments are an important part of Australia's healthcare system with millions accessing the service every year. But there is one major change coming to telehealth appointments that patients need to know about CLICK HERE to read more Field of Women Reflecting on my first Field of Women, it was truly a wonderful day. I was humbled by the many lovely people who crossed my path and stood beside me on the MCG. The strength and sense of community I'll never forget. There were smiles, tears and moments of personal reflection I could see on people's faces; arms around each other in support and bright colours to shine a light on breast cancer. Thankyou to everyone who shared their story and I hope you enjoyed the day. You can now view photos and videos from the day via the links below: View photos here View live stream recording here BCNA Staff survey - Field of Women 2023 Here is my own little memory that I love from the day: 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). Books/Movies/TV Series/Documentaries Great to see information about the upcoming Coffs Harbour Forum in the local news this week Coffs Coast News Of The Area 1 September 2023 - News Of The Area Thankyou for taking the time to read the update. Please take care and if you have any questions or feedback please messaged of our Online Network moderators below: @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 "I am not what happened to me, I am what I choose to become". - Carl JungFriday Update - 31st March 2023
Hi everyone, BCNA have been around town with the Port Lincoln and Warrnambool forums both being held in March. If you wish to watch the recordings when they become available, refer to the My Journey article https://myjourney.org.au/article/3662 ; Easter is just around the corner too. For those who observe the occasion, may you have a lovely week. If it includes a hot drink with hot cross buns to mark the occasion, then we have come into the perfect weather here in Victoria. Take Care and enjoy the update. Community Highlights March 2023 Activity During the month of March the Online Network had 91 new discussions; 441 comments and 18,557 visits to the community. Popular Forum Discussions If you have missed some of the most active discussions in the past couple of weeks, you can check them out via the links below: All the tests to update new diagnosis Friday Funnies Feeling a failure Just feel like running away Decision on chemotherapy Posts by 'Category Name' March 2023 Community News BCNA News - 07 March 2023 BCNA part of first ever research into Fear of breast cancer recurrence in Aboriginal and Torres Strait Islander women BCNA News - 23 March 2023 Findings from the study, led by Professor Jane Usher at the University of Western Sydney, found people from LGBTIQ+ communities continue to face disparities of care BCNA Health Professional Network News - 23 March 2023 A keynote speaker at a Health Professional Network event hosted by BCNA in Adelaide earlier this month provided an informative presentation on managing oestrogen deficiency symptoms in women living with breast cancer. Read How to Manage Menopause After Breast Cancer - Dr Tonia Mezzini New Trial for Advanced HER2-Positive Breast Cancer. Breast Cancer Trials has opened a new study called the TUGETHER clinical trial, which aims to find out if adding tucatinib and pembrolizumab to the usual treatment given to people with advanced HER2-positive breast cancer, will slow down the growth of the cancer. Read further details about The TUGETHER clinical trial and discuss with your treating team if you wish to know more about accessing trials Trans Day of Visibility Today on Trans Day of Visibility (31 March 2023), BCNA affirms and celebrates our transgender and gender diverse members. Trans and gender diverse people may have questions and concerns about how they will be impacted by a breast cancer diagnosis, including how cancer treatment will affect their body image and gender affirmation, how their treating team will respect their gender and how they can access inclusive peer support. Breast cancer can affect anyone, and everyone has the right to health care that respects their identity and is free from discrimination. Read more about challenges faced by trans and gender diverse people in this report by the Australian Research Centre in Sex, Health & Society: https://www.latrobe.edu.au/.../TRANScending... BCNA has a suite of resources for those in LGBTIQ+ communities with breast cancer, here: https://www.bcna.org.au/.../information-for-lgbtiqplus.../ Break the cycle of hereditary breast cancer BCNA joined a Pink Hope event at Parliament House in Canberra last week to help break the cycle of hereditary breast cancer. Representatives from BCNA's Policy & Advocacy Team heard from a consumer panel shining a light on the challenges Australians at risk of, or diagnosed with, hereditary breast cancer face. As part of this panel, we heard from Nikki Neofitou who at 23 made the decision to undergo preventative breast cancer surgery, but it was delayed and, while waiting, she was diagnosed with cancer. BCNA joins Pink Hope in advocating for a national approach to reducing wait times for preventative, and other breast cancer-related, surgeries. Read the ABC News story here: https://www.abc.net.au/.../surgery-waits.../102130914 Pink Hope Community ABC Australia Field of Women is back at the 'G' in 2023! BCNA's iconic Field of Women is back at the MCG this August to mark BCNA's 25th anniversary. Early-bird pre-sale tickers will be available soon! Register NOW to be notified when pre-sale tickets are live via the following link https://bcna.live/FieldOfWomen2023 Webcasts / Podcasts Webcast Details will be available next week for an upcoming webcast: 'Prioritising me - setting healthy boundaries' on the 27th April 7.00-8.00pm. Stay tuned! Podcast Season 2 of 'What you don't know until you do' podcast is coming in April! Following on from the success of season 1 of What You Don’t Know Until You Do with Dr. Charlotte Tottman, in which Charlotte talks about her lived experience of breast cancer over 10 insightful episodes, we're excited to be back with season 2. This season will focus on Charlotte's clinical experience and will explore topics such as navigating relationships with your treating team, managing behavioural changes and the importance of setting boundaries for self-care. Books / Movies / TV Series / Documentaries Currently reading the book The Girl Who Fell From the Sky . This is a story of a young woman's resilience and courage after falling 14,000 feet whilst skydiving. Emma wakes in hospital a paraplegic and learns how to live again. Hope you enjoyed the update and if you have any feedback please feel free to comment below or send a private message. @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 helpline@bcna.org.au The mod team - Mez, Carissa, Jenny and Pat "I can be changed by what happens to me. But I refuse to be reduced by it" - Maya AngelouThe Beacon - 1st March 2023
Hi everyone, If you haven't checked your inbox yet, you should have received the latest issue #94 of The Beacon. Alternatively you can access it here via the link https://www.bcna.org.au/news-events/the-beacon-magazine/issue-94-march-2023/ If you prefer to read it offline as a PDF there is a 'Download' option. Hope you enjoy the content.Friday 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 helpline@bcna.org.au 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 Edwards
