Friday update 28 June 2019
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. |
|
University of Sydney research study – Online Researchers at the University of Sydney are The study involves an anonymous online survey and - - 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
Comments
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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 it1 -
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.1
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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 berry0
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Thanks for the update and the mention @Giovanna_BCNA... I certainly may have had a quiet reflective celebration.
You certainly have been busy.
Paula xx0 -
We are not talking about lobular carcinoma IN SITU.1
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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?0
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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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