Friday Update 5th August 2022
Hello everyone,
Hope you are keeping safe and warm during the windy, wet weather many are experiencing throughout different parts of Australia. I still managed to capture the gorgeous sun setting as I left the BCNA office in Camberwell earlier in the week:
In this update I have a sneak peak of the content coming up in September’s issue of The Beacon, as well as a reminder of upcoming events in August.
Community highlights
July Online Network activity
In July the Online Network had 11,157 visits to the community; 92 new discussions and 445 new comments.
Living with metastatic breast cancer group
We have an upcoming webcast focusing on metastatic breast cancer (details in this update). Therefore, it is a timely reminder about the online network private group Living with metastatic breast cancer . This is a private group for people living with metastatic breast cancer (also called secondary and advanced breast cancer). The group is a safe space to connect with others for peer support, hope and encouragement.
Popular forum discussions
Members new and old may have missed some of the forum discussions that have been most active the past fortnight:
2. Round 2 ??
3. Cancer was easy Tamoxifen is killing my life
4. Scalp cooling - should I stop, done 11 chemos and 5 to go
Posts by ‘Category’ Name’ 22 Jul 22 - 5 Aug 22
Community News
BCNA My Journey – Updates
Last week we updated the information about COVID-19 in My Journey. This includes information about winter booster vaccinations.
There is also a new article COVID-19 oral antiviral treatments. Oral antiviral medication for the treatment of COVID-19 helps reduce the risk of developing severe illness and therefore help prevent the need for hospitalisation. It is only available under the PBS if certain criteria are met, including people with moderate to severe immunosuppression such as from chemotherapy.
BCNA Wagga Wagga – Online Forum
The Wagga Wagga information forum due to be held as a face-to-face event in August will now be a digital event (splitting the event across 29 Aug for Early Breast Cancer and 30 Aug for Metastatic Breast Cancer and 8 Sept for a combined session). This digital event content will be focused on Wagga Wagga, however all BCNA members will be able to tune into the events. Stay tuned for further details to be released on the BCNA website in the coming weeks
(The decision to switch to a digital event is due to the expected peak in COVID-19 cases in August and September, and BCNA do not want to place the local community at unnecessary risk or put the health workforce under further strain).
BCNA – The Beacon (Preview)
As the September edition of The Beacon is currently in-progress, I have the inside word on several topic/stories that will be included:
*Life Changing impact of Herceptin
Member story: we speak to Jenny who shares her story of living with metastatic breast cancer for the last 10 years and Herceptin recommended as part of her treatment. The chemotherapy, a targeted treatment for women with HER2-positive breast cancer, had only recently been added to the pharmaceutical benefits scheme after BCNA’s advocacy to make the life-saving treatment more affordable.
*Trialling a new treatment for triple negative breast cancer
Member story: June shares her story of metastatic triple negative breast cancer (TNBC) and the astounding results she’s had from a new chemotherapy drug, Trodelvy. After five months of treatment, her tumours have become mostly inactive, and she’s now enjoying a long-awaited trip overseas to visit family in North America. We hear about how she heard about the clinical trial and drug and how it has empowered her to live her best life.
*Awareness for men and breast cancer
Member story: BCNA interviews Harry, who speaks about raising awareness of men’s breast cancer and how he found out about BCNA
*Ask the Expert – Managing long term side effects of breast cancer treatments
Member/Expert: On from the successful webcast in May, BCNA asked Bodga and Naveena additional questions that came through the question box on the night of the event including fatigue, hot flushes, how to get a good nights sleep, emotions of side effects and how to manage bone and joint pain.
BCNA’s Pink Tradie is back!
During August and September, we’re calling on tradies across Australia to wear pink, by pulling on a Pink Tradie beanie and a pair of BCNA pink socks, to support the 20,640 Australians expected to be diagnosed with breast cancer this year. CLICK HERE to read more
Giving cancer patients more of a voice in their treatment
A new study conducted at Flinders University’s Clinical Cancer Epidemiology Lab on breast cancer has found that a patient’s perspectives on their wellbeing can be better at predicting treatment and symptoms than clinician-based tools. Read the full article HERE
Webcasts - Our metastatic breast cancer webcast is happening soon!
In this webcast, we will hear from Medical Oncologist Professor Fran Boyle, Metastatic Breast Care Nurse Alice Gibson, BCNA Consumer Representative Ros Casperson and BCNA member Cybele Orton.
Fran practices at the Mater Hospital in Sydney and is a professor at Sydney Medical School. Her research focuses on breast cancer treatment, supportive care and health professional communication. Alice has been a breast care nurse since 2018 and supports her patients and their families as they navigate the complexities that come with their diagnosis.
Ros is a young mum who has lived with metastatic breast cancer for over five years and Cybele was diagnosed with early breast cancer in 2010. Genetic testing showed Cybele had the BRCA2 gene mutation, prompting her to have a double mastectomy and hormone-blocking treatment. Then, in 2017 she was diagnosed with metastatic breast cancer.
The webcast will address what is important to know in those first few weeks after a diagnosis of metastatic breast cancer including navigating the health system, treatment options, identifying key members of your treating team, and the support and care available to you Register now via the following link: https://bit.ly/metastatic-webcast-bcna
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
Books/Movies/TV Series/ Documentaries
An inspirational story about love, life, happiness and hair. A true story about author Alex Jagger’s breast cancer journey. She tells the story in real time with humour, a blunt Yorkshire honesty and breath-taking courage. What really happens when you're trying to keep your head (and your hair) when the rest of the world is going mad. And what really happens when you finally find your very own sunshine.
Hope you have enjoyed the update 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
