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Friday Update - 8th July 2022

Mez_BCNAMez_BCNA VictoriaAdministrator, Staff, Member, Moderator Posts: 348
edited July 22 in Community news and events


Friday Update 8th July 2022

Hi everyone,

Apologies for the belated Friday update. What a busy and wonderful month of activity for BCNA in June. Hopefully I can catch you up in today’s update. In the next update I will be able to share registration details of the Wagga Wagga Information Forum, however you can bookmark it in your calendar to be held on the 17th of August 2022.

Take care and enjoy the update.


Community highlights

June Online Network activity 

The month of June saw the Online Network receive a total number of 11,380 visitors to the community: 85 discussions and 444 comments. 


First Peoples Private Group

This is NAIDOC week, therefore it is a timely reminder about the online network private group First Peoples . If you identify as an Aboriginal or Torres Strait Islander and have been affected by breast cancer, you may like to share your experience or reach out to others for support who are going through a similar journey.

 

Popular forum discussions

Members new and old may have missed some of the forum discussions that have been most active the past fortnight:

1. How long on hormone blocker medication

2. Feeling sorry and horrible

3. Happy Belated Birthday 🥂

4. Metal staples in breast

 

Posts by ‘Category’ Name’ June 24 – 8 Jul 2022



Community News

BCNA My Journey article updates

Recently, we launched an updated financial factsheet that explains the medical costs of breast cancer and provides advice on understanding financial consent, your income options, and where to find help. You can read this now via My Journey - Managing the costs of breast cancer . You can read more about our Policy & Advocacy Strategy: Towards 2025 via the following link: https://www.bcna.org.au/about-us/advocacy/

Approximately 5-10% of breast cancers are thought to be hereditary. You can read more information in My Journey in the new article Genetics and risk of breast cancer

 

Did you miss the Launceston TAS forum?


Thank you to everyone who attended our Information Forum in Launceston on the 22nd of June. We were lucky enough to be joined by local groups in Tasmania such as Canteen Australia, Women’s Health Tasmania, Encore and Cancer Council Tasmania. We also had wonderful presenters Dr Ben Forster, Dr Carrie Lethborg, Collette Eberhardt, Sandra Carter, Jenny Gilchrist, Orla Timmins, Katie-Jane Brickwood and Emma Warnecke who shared relevant information and helpful tips and resources. You will be able to watch the on-demand recording in the coming weeks so stay tuned. You may want to watch the Ballarat forum recording in the meantime via the link Ballarat Information Forum


Pink Lady Match – The Power of Pink


As you can see from some of the great pictures captured, it was so wonderful to get back to The Pink Lady Match which hasn’t happened since 2019. For me the tribute field was definitely a highlight, it was a clear Melbourne night and it was just beautiful to see everyone out there supporting people affected by breast cancer.

BCNA raised almost $350,000 across our #PLAY4BCNA beanie and merchandise sales and the Virtual Pink Lady donations for the match which will provide vital support for the more than 20,000 Australians diagnosed with breast cancer this year. Thanks to this amazing support BCNA will continue to work to ensure they receive the very best treatment, care and support.

Thankyou to all of you who said hello, offered messages of support, donated or purchased BCNA merchandise. Looking forward to next year’s Field of Women (Register your interest here https://www.bcna.org.au/news-events/2023-field-of-women/) 


BCNA Network News - Updates on new breast cancer treatments and technologies

BCNA made a submission to Pharmaceutical Benefits Advisory Committee (PBAC) in support of trastuzumab deruxtecan (Enhertu™) for the treatment of metastatic HER2+ breast cancer patients who have received a prior HER2 treatment in the metastatic setting. This will be considered in PBAC's July 2022 meeting.

BCNA also made a submission to Medical Services Advisory Committee (MSAC) in support of the multi-gene prognosis test, EndoPredict™ for those with ER+, HER2- breast cancer. BCNA supports evidence that EndoPredict™ and other genetic tests can assist multi-disciplinary teams to better predict the risk of breast cancer recurrence and tailor treatment accordingly. EndoPredict™ will be considered by MSAC in its July 2022 meeting for subsidy on the MBS.


BCNA Network News – Trials and Studies

Consumers receiving an oral hormonal treatment for HR+/HER2- advanced breast cancer are invited by researchers to complete the online screener via the consumer-facing materials found HERE.

BRCA-P: BRCA-P is a world-first trial that aims to prevent breast cancer in women with a BRCA1 gene mutation

CAPTURE: The CAPTURE clinical trial aims to identify women and men with hormone-receptor positive metastatic breast cancer, who may benefit from a novel combination of drugs that may improve progression free survival and offer a new treatment option.

DIAmOND: The DIAmOND clinical trial will investigate if the addition of two immunotherapy drugs to Herceptin (Trastuzumab) will improve treatments and outcomes for women and men who have HER2-positive metastatic breast cancer.

EXPERT: EXPERT aims to improve personalised use of radiation therapy in early breast cancer patients by using a genomic test to identify women who can safely avoid this treatment after surgery and the possible side effects.

FINER: The FINER clinical trial aims to find out if cancer will remain under control for longer in patients with advanced ER-positive and HER2-negative breast cancer. 

(Please discuss suitability of trials relevant to your needs with your treating team and you can read more about breast cancer trials HERE)


Study of artistic tattooing of breast cancer mastectomy scars

Our Policy & Advocacy team wanted to share a study that may be of interest to our Online Network members:

Tina-Maree Newlan, current student of Charles Sturt University and Psychology Honours candidate, is currently conducting a qualitative exploratory study investigating the experiences of women who have had breast cancer mastectomy surgery and tattooed (or are in the process of tattooing) their mastectomy scars. Tina-Maree is looking for 8-10 women, of all ages (18+), who have had the above and would like to participate in an interview with Tina-Maree. For further information, or to indicate that you are interested in participating, please email Tina-Maree on [email protected]**** on or prior to 15th July 2022


Webcasts - What did you miss?


Did you miss Ask the Expert digital event with Dr Michelle White on managing side effects of hormone blocking treatment? Dr Michelle White and BCNA Consumer Representative Kym Berchtenbreiter discuss the side effects of hormone blocking treatment and how to manage them. The video is now available to be viewed on-demand https://bit.ly/3nGDe1w


Podcasts

Episode 44: Work after breast cancer: Tackling the difficult conversations

Joining us for this episode of Upfront are Greg Smith and Lisa Edgar. We hear about how best to approach your employer to discuss your diagnosis and treatment and the potential impact on your work, what support you should expect from your workplace, the main challenges faced when working after a diagnosis and beyond, and what you can do if your employer is not supportive of you.

We look forward to launching the ‘Men & Breast Cancer’ podcast this month with two of our consumer reps Harry and Pieter. Reports are that it is another excellent discussion and will be very helpful for men diagnosed with breast cancer. 


Books / Movies/ TV Series/ Documentaries


Continuing with the relevance to NAIDOC Week, I wanted to share the BCNA website page Information for First Peoples that provides specific information for First Peoples diagnosed with breast cancer.


Hope you found the update informative 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

“Those who lose dreaming are lost” – Aboriginal Proverb

Comments

  • iserbrowniserbrown Regional VictoriaMember Posts: 5,132
    Excellent lobbying by BCNA
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