Friday Update - 10th March 2023

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Mez_BCNA
Mez_BCNA Administrator, Staff, Member, Moderator Posts: 902
edited March 2023 in Community news and events

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

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

Comments

  • Kristen
    Kristen Member Posts: 118
    edited March 2023
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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/



  • Mez_BCNA
    Mez_BCNA Administrator, Staff, Member, Moderator Posts: 902
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    I can pop this in 'Event's for you @Kristen so it shows on the Homepage calendar. You are welcome to send me other events throughout the year that we can make more visible 
  • Kristen
    Kristen Member Posts: 118
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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.