Friday update 28 June 2019

Giovanna_BCNAGiovanna_BCNA Administrator, Staff, Member, Moderator Posts: 1,244

Hello everyone,

Welcome to our community update.  It has been a very busy time at BCNA so an update has not been posted for a few weeks.  It’s great to touch base with you all today and a warm welcome to all of our new members who have joined the online community over the last month.  There have been some great online discussions during this time.  A gentle reminder, make sure you pop into some of the other online groups to see what discussions are happening and to see if you are able to make a contribution. See link to groups here

During May BCNA launched our national Pink Bun Campaign in collaboration with our ‘Breast Friends’ Bakers Delight.  This has been an amazing partnership and BCNA would like to thank Bakers Delight for all their support over the last 19 years! 

BCNA Ambassador, Stuart Diver visited our office, flying in for the afternoon to record a Podcast for us about caring for someone with cancer.  It was great to have the opportunity to hear him speak about his recent experiences.  Click here to review current podcasts available.  We will be adding more podcasts to this list as they become available so make sure you check in every now and then.


Marianne, Rosie and I attended the Cancer Nurses Society 21st Annual conference in Melbourne last week.  This was a great opportunity to connect with other cancer nurses and breast care nurses about the My Journey Online Tool.  The new online tool has been very well received and we had some great feedback at the conference.  We were ready with our iPads and mobile phones and were able to spend time with health professionals showing them how to navigate the tool for information and resources.



Community highlights

1 Invasive Lobular Cancer (ILC)

This thread was commenced by @berry and started a very interesting discussion regarding invasive lobular carcinoma and the differences in comparison to invasive ductal carcinoma.  Berry has asked if we can commence a private group for women with lobular carcinoma.  We are very happy to go ahead with this request but need to give the group a name before we get going. Any suggestions?  

In searching for some information about lobular carcinoma, I came across the following Cancer Australia publication titled ‘Clinical guidance for the management of lobular carcinoma in situ’ July 2016. Click here to view document.


2 Hormone therapy, is it worth it webcast

Thread commenced by @Artferret who commented ‘Way to go, Kate! You were awesome! And thanks for having my drug holiday question featured too. I am doing a diary for it but had not contemplated continuing it after resuming the drug but now I shall, good idea. There was so much info that I will have to watch it again if I can figure out how to do it!’

What a great webcast, well done Kate!  The webcast was facilitated by BCNA CEO Kirsten Pilatti who was joined by BCNA member Kate, Medical Oncologist, Dr Richard de Boer and Professor of Obstetrics and Gynaecology, Martha Hickey.  There was a lot of information provided on the night and the webcast went over time. This was just the tip of the iceberg however and we are looking at having another one to answer more of the questions that we weren’t able to get to on the night.  I also have forwarded on your feedback to our webcast team and will keep the online community posted regarding any updates. 

For those who would like to view the webcast, you can view it here. Hormone blocking therapy is it worth it? You will need to register to view the webcast if you have not already registered.  


3 8 year clearance this week after triple neg recurrence

Great thread commenced by @mum2jj and absolutely wonderful news!  Congratulations Paula, I hope you celebrated that milestone!  Awesome that it provides so much hope and encouragement to others within our online community.  I loved the response by @Onemargie!

At mum2jj posted ‘Just thought I’d share this happy snap to give hope to some of you ladies full of fear and recently diagnosed. It’s good to know that it’s not always the worst news. When I had my recurrence 6 months after all my treatment completed I could not believe it. However here I am 8 years down the track. I know there are others who have not been as fortunate as me and my heart goes out to them. Treasure ever day girls. Much love to you all. Paula xxx’

Onemargie mum2jj. I’ve just gone 3 years cancer free. I had TNBC as you know slightly different to you no lymph node involvement had 8 removed though along with a double mastectomy (my choice) no rads but 8 rounds of chemo negative for the gene. I love reading these stories. You look beautiful for a loo shot 💕. You gave me heaps of support when I was first diagnosed which I was grateful for. Big hug. Margie.’


Community news

Susan G. Komen and Cancer Australia announce partnership on Metastatic Breast Cancer Research

It was announced on 30 May 2019, that Susan G. Komen, the world’s leading breast cancer organisation has partnered with Cancer Australia to co fund research on metastatic breast cancer.  The International Collaborative Research Partnership between Cancer Australia and Susan G. Komen will provide $450,000 over three years to fund the research of Dr Delphine Merino at Latrobe University in Australia through a Career Catalyst Research Grant.  For more information click here

University of Sydney research study – Online survey exploring anxiety and depression In the context of cancer

Researchers at the University of Sydney are interested in your views about depression and anxiety in the context of cancer and finding out what you know about where people diagnosed with cancer can go for help and support with their emotional concerns.

The study involves an anonymous online survey and may be suitable for you if you:

-          Are over 18 years old

-          Have been diagnosed with cancer in the last 5 years.

To find out more click here

NPS MedicineWise

Most of you would be aware of NPS MedicineWise which was established in 1998 as the National Prescribing Service.  The service remains committed to supporting quality use of medicines to improve health decisions and health and economic outcomes in Australia.  In light of recent online discussions regarding hormone therapies and 'fillers' I accessed the website for further information and found out that they have an information line for consumers.  If you would like more information on any of your prescription medicines, you can talk to a professional on 1300 633 424.  For more information click here.

   

Adelaide Survivorship Conference – Together Towards Tomorrow

We're excited to announce our next Survivorship Conference will be held in Adelaide on Saturday 27 and Sunday 28 July 2019.  Join us to learn about the latest in treatment and living well after a breast cancer diagnosis at the BCNA 'Together Towards Tomorrow' Survivorship Conference.

Attendees will have the opportunity to attend three events over the weekend and hear from leading experts.

To register click here

Saturday 27 July:

Two sessions will run concurrently; one session for people diagnosed with early breast cancer, and a separate session for people living with metastatic (secondary, advanced, stage 4) breast cancer.

The early breast cancer session will include topics such as the future of breast cancer treatments, exercise, lymphoedema, emotional wellbeing, and behaviour change. We will also be joined by Olympian and breast cancer survivor Raelene Boyle who will share her personal breast cancer story.

The metastatic breast cancer session will include topics such as the future of metastatic breast cancer treatments, exercise, emotional wellbeing, behaviour change, guided meditation and a facilitated discussion 'You look so well, when does your treatment finish?'.

Saturday's conference program will be followed by a twilight Pink Lady Tribute Field Ceremony and social drinks and canapes.

Sunday 28 July:

Sunday's program will focus on body image and breast reconstruction.

Click here to view the Conference Program


This week’s reflective quote

“When the mind is calm, there’s clarity; with clarity there’s contentment; with contentment, there’s compassion”

Headspace


Have a great weekend everyone, take care

Regards Giovanna and the moderation team

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Comments

  • lrb_03lrb_03 Member Posts: 1,164
    Thanks @Giovanna_BCNA
    Love the reflective quote. I think many of us these days struggle for that calm mind. This reminds us of all that can come from it
  • berryberry Member Posts: 61
    The information on ILC is sparing and so, so old. Its disgusting that's all Cancer Australia has on Lobular Cancer. You too obviously have no idea.
  • Patti JPatti J Member Posts: 584
    Yes @berry. I have invasive pleomorphic lobular carcinoma with extensive generalised bone secondaries. I also have liver secondaries.
    Even my oncologist is unsure of the benefit, to me, of my medication because of the pleomorphic component.
  • berryberry Member Posts: 61
    I am so sorry to hear  about this difficult situation @Patti J. All I can suggest is to join this FB page Support for People with Metastatic Lobular Breast Cancer, I am sure someone will share their treatments. The other FB page is Lobular Breast Cancer (ILC) invasive lobular carcinoma. All the best. Maybe someone on this site is going through the same predicament. kindly berry
  • SouthgirlSouthgirl Member Posts: 74
    I hear you @Patti J - so much focus on “survivorship”. A metastatic diagnosis is a very lonely place to be.
  • mum2jjmum2jj Member Posts: 3,962
    Thanks for the update and the mention @Giovanna_BCNA... I certainly may have had a quiet reflective celebration. 
    You certainly have been busy. 
    Paula xx
  • Patti JPatti J Member Posts: 584
    We are not talking about lobular carcinoma IN SITU. 
  • TeddyBearTeddyBear Albury, NSWMember Posts: 13
    I was wondering if by any chance a MBC forum can be held in Albury. I have been to some in Melb and Sydney and have got such a lot from them but Adelaide and the Gold Coast are too far away for me to travel. Would anyone know when the next Sydney or Mel one would be?
  • Giovanna_BCNAGiovanna_BCNA Administrator, Staff, Member, Moderator Posts: 1,244
    Hi @TeddyBear
    Thanks for your message, sorry I have not responded sooner.  The MBC forum that will be held in Brisbane on 13 October 2019 will be streamed live.  You may like to speak with the local BCN and others locally who are interested in viewing the forum as you could all get together.  We are keen for feedback, please let us know if you have any issues or topics that you would like addressed at the meeting. Regards

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