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 communityPopular 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
Posts by 'Category Name' February 2023
Community News
BCNA News – 07 March 2023
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
@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
Comments
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This saturday. Learning about lymphoedema is the best thing you can do if you have it. Theses info days are jam packed with helpful info from top proffessionals you don't normally get all in one place. Online ,so easy to sit back and watch live on self care saturday. Don't miss it https://www.lymphaustralia.org.au/events/calendar-of-events/
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Thanks. I can vouch it is good quality info and organisation suitable to share. As a 12+ yr lymphie myself and 16 yr breast cancer survivor who runs a support group with the local breast care nurses ever since my own expereinces. I was wondering where to put it to try and reach people. I started going to these annual info days many years ago as the st george public hospital physio who i used to see was one of the main committee members who organised it.Best thing i ever did to motivate me to look after my lymphoedema better.The Lymphoedmea Aust Association have no big budget for marketing,its all volunteers. It is such a struggle reach people with lyphoedema,so many don't even know they have it ,let alone make them realise they need to learn more for their own sake to slow the progression of the disease, not just put on a sleeve and ignore it.They only had less than 100 sign up online last year, such a shame, it cost a lot to hire a company to live stream it.They are also trying to aim at doctors too- we really need them to upskill. I have tried to contact associations like nursing,physios, massage therapists as well. I know the BCNA ask the expert webinar on lymphoedea had huge numbers register ( that was a great one , as all all the others i often recommend to my support group ladies,so good having the pre lymphie one too as a resource ) .I really appreciate anything for a last push before the even ton saturday .I sadly don't know when registrations close as i am not involved it in.Just trying to help spread the word for them. But hopefully open up until it starts.Thanks again.
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