Friday Update 10th February 2023
Hello members and welcome to the latest Friday update,
In this update I share several topics and insights into the upcoming March edition of The Beacon. I also share information about the Carman's Fun Run, as this date is coming up fast and I wouldn't want you to miss out if you live in the Melbourne area.
Enjoy!
Community highlights
January activity
In January the Online Network had 85 new discussions; 548 new comments and 15,293 visits to the community
Popular forum discussions
You may have missed some of Online Network discussions that have been most active in January:- Single mastectomy with immediate DIEP reconstruction
- Mastectomy
- Decisions on surgery
- Bone Scan along with 3yr mammogram and ultrasound
- 5 years today since my surgery ....
Posts by 'Category Name' January 2023
Community News
BCNA My Journey Updates
This week we had three articles related to COVID-19 which have been significantly reviewed and updated. Reflecting the recent government announcement regarding access to booster shot from February 20th 2023. Refer to below links
COVID-19 oral antiviral treatments
BCNA - Improve access to breast cancer care and support in NSW
More than 6,400 people in NSW are expected to be diagnosed with breast cancer in 2023.
BCNA is calling on all those contesting the NSW state election to show their commitment to cancer care and support for people affected by breast cancer.
Waitlists for elective surgeries have blown out across Australia.
In our 2022 federal Election Manifesto we called for greater transparency of waiting times, especially for those waiting for a breast reconstruction following breast cancer.
In NSW, the 2023 state election is further opportunity to state governments to commit to invest to clear the current elective surgery backlog, especially in rural and regional areas.
Read BCNA's federal election manifesto via the link https://www.bcna.org.au/media/8473/bcna_election_manifesto_fy22_v3.pdf
BCNA - Latest information regarding Perjeta (pertuzumab)
We have had a few enquiries to the Helpline team regarding access to Perjeta for early breast cancer diagnosis, therefore the below information may be helpful to assist those who are unsure of the most current information (As at February 2023).
BCNA understands that Perjeta (pertuzumab) is currently subsidised on the Pharmaceutical Benefits Scheme (PBS) for metastatic breast cancer only. It was submitted for consideration by the Pharmaceutical Benefits Advisory Committee (PBAC) for early breast cancer twice, in 2018 and 2020, however was unsuccessful in both instances.
BCNA submitted a consumer comment to the PBAC in 2020 in support of subsidising Perjeta (pertuzumab) in combination with trasutuzumab and chemotherapy for the adjuvant (post-surgery) treatment of the Human epidermal growth factor receptor-2 positive (HER2-positive), lymph node positive early breast cancer.
We also noted in this submission the emerging clinical evidence of the effectiveness of neo-adjuvant (pre-surgery) Perjeta (pertuzumub) for HER2-positive early breast cancer and advocated for it to be considered for subsidy in this setting as well.
BCNA understand that Roche currently runs a Patient Access Program for Perjeta (pertuzumab) in the neo-adjuvant setting in which the out-of-pocket costs are shared by the patient and Roche whilst this treatment is not subsidised on the PBS.
BCNA continues to advocate to both the pharmaceutical industry and to the government for improved access to subsidised treatments to alleviate the financial burden of a breast cancer diagnosis and to improve equity to access to optimal care for all Australians. Speak with your medical oncologist if you would like further clarification about the program. You can also read further details via BCNA's My Journey article https://myjourney.org.au/article/2201
The Beacon - March Edition
Here is a sneak peak into the upcoming topics and information in the latest Beacon edition:
- Ask the expert: Support needs after a diagnosis - Dr. Charlotte Tottman answers questions including: What is support? What does it look like in a breast cancer experience? Why is support different for everyone? What can be helpful if you feel disappointed about the support you've received?
- What helps when you don't have much support - Three members share their real experiences of having not much support during and beyond their breast cancer diagnosis.
- Then and now: How support has changed - Member Glenda shares her story, showing a comparison of her first breast cancer diagnosis in the 90's and her recurrence in 2022. Touching on elements such as access to information, breast care nurses, financial support and ongoing support
- Breast cancer researchers embracing the voice of BCNA Consumer Representatives - The story looks into 'Project: Finding My Way - Advanced study - randomised control trial (RCT)' and 'Project: EMPOWER-SMS Study'.
Carman's Fun Run
Join us for the Carman's Fun Run on the 19th February 2023. Held at the picturesque Elsternwick Park (located at the doorstep of the popular Elwood shops), be part of our inclusive and supportive community to inspire participants along their journey to a half-marathon, 10k or 5k. With a family friendly event site Carman's Fun Run will be an enjoyable day out for all participants. Click the link for more details on how to register https://www.bcna.org.au/events/2023/carmans-fun-run-2023/ or if you would like to volunteer https://bcna.live/CarmansFunRun-VolunteeringForums / Webcasts
WEBCAST Managing Stress and Improving Wellbeing with Mindfulness and Meditation - Wed 15 February 7:00-8:00pm AEDT
Join mindfulness expert Prof. Craig Hassed OAM; Medical Practitioner and Associate Prof. Dr Emma Warnecke and BCNA member and mindfulness meditation teacher Iris Bar, as they discuss the benefits of mindfulness and meditation to help reduce stress during and beyond a breast cancer experience. Click on the link to register https://bcna.live/MindfulnessWebcast
Port Lincoln Information Forum - Tues 7 March 9:00am - 3:00pm ACDT
Join us at Port Lincoln hotel to hear a range of topics and connect with those in your local community. Guest speakers will include clinical psychologist Dr Charlotte Tottman; McGrath Breast Care Nurse Michelle Lydeamore and Lymphoedema Physiotherapist Kristy Roeger.
Click on the link to register https://bcna.live/PortLincolnForum
Books / TV Series / Movies / Documentaries
I shared this YouTube video in the 'Living with metastatic breast cancer' private group and thought I would share with the wider forum community. You may have already seen the interview last week with MP Peta Murphy, who shared her breast cancer journey
https://youtu.be/97RyknJv5FUHope you have found this update useful. Please feel free to share your ideas for content that you would like to see in future updates. If you have any concerns while using the Online Network, please direct message (How do I send a private message?) one of the moderators below -
@Carissa_BCNA @Jenny_BCNA @Pat_BCNA @Mez_BCNA
If you need to speak with one of our friendly Helpline staff over the phone, please call 1800 500 258 (Mon-Fri 9:00am-5:00pm AEDT) or email helpline@bcna.org.au
Warm regards,
The mod team - Mez, Carissa, Jenny, & Pat