BCNA
and the Parliamentary Friends of Women's Health
are holding a panel discussion – Making Metastatic Breast Cancer Count – at
Parliament House, Canberra, 8-9am Thursday 3 August.
It’s part of our
advocacy calling for people living with metastatic breast cancer in Australia
to be consistently counted on our cancer registries.
If you are not counted
you are not seen, which means you are ‘invisible’ when health service providers
and policymakers plan cancer services and support.
The event to be
co-hosted by MPs Peta Murphy and Bridget Archer, will also hear from BCNA
Consumer Representative Lisa Tobin from Perth who has
been living with breast cancer for 23 years and metastatic breast cancer for
the past 11 years.
Please note
that the livestream is being hosted by the Australian Parliament House on
Webex. Webex is free to use either in-browser or by downloading the client onto your
computer.
A couple of ABC discussions (31/7/23) that those with Advanced Cancer may like to listen to ..... with the chance of free gene testing and clinical trials ...
What I would like to see happen as 'the norm':
I would like to see that ANYONE diagnosed with Stage 4 has the 'current' biopsy compared with the 'ORIGINAL' biopsy as an automatic process (if not diagnosed straight up as Stage 4) and it be made available to researchers to do comparisons to see EXACTLY what has changed in those 2 samples - to try & help determine WHY that person went on to Stage 4 - which may then help predict others in the future - those who are more likely to go Stage 4. If it is a gene thing, maybe they could be manipulated, to prevent that progression?
Currently, up to 30% of ALL of us diagnosed with BC, may go on to develop Stage 4 .... they still just don't know 'who', 'why' or 'when'. This research may assist in understanding the 'who', 'why' and 'when' .... and even possibly prevent it.
But, if there isn't a 'list' of those with Advanced Cancers ..... how do these gene tests/trials get to the people who NEED THEM?
(From BCNA's Policy Advocacy & Support Services team)
We are excited to share with you an update on our National
Metastatic Breast Cancer data roundtable that was held last week in Canberra.
The roundtable was a key recommendation of our inaugural
issues paper, Making
Metastatic Breast Cancer Count, launched in October of last year. After
several months of careful planning and extensive engagement with the sector, we
successfully held a national roundtable bringing together over 35 experts
across cancer registries, cancer epidemiology, policy, research, and several
peak clinical groups.
The roundtable was facilitated by Professor Sanchia Aranda
AM who drew on her extensive expertise working in cancer control to help drive
and moderate conversation. The resounding consensus from all those in the room
was that there needs to be a shift to view cancer data as an ‘asset’ rather
than a risk. The group work across three streams of ‘data and processes,’
‘resources and technology,’ and ‘governance and policy’ to first identify
barriers and challenges, and secondly workshop and prioritise recommendations
to start to overcome these across short-, medium- and long-term timeframes.
Through extensive stakeholder engagement prior to the event,
we arranged for key background context to be shared via re-reading as well as
several presentations throughout the day by Professor Jason Pole, Cancer
Australia, Danica Cossio, Professor Sue Evans and Dr Sally Lord.
Formal analysis will now be undertaken by BCNA to write-up
the discussion from the day as a formal paper than can then drive advocacy to
state/territory and federal government. We will also work further with our
roundtable attendees and other key stakeholders to determine accountability and
drive a joint advocacy plan.
Initial recommendations for investment in the short term
included:
Deriving metastases from
existing and linked cancer data
Funding smaller cancer
registries to achieve minimum consistent standards.
The need for a national
cancer data strategy and subsequent framework, discussed as part of the
upcoming Australian Cancer Plan.
Leveraging of existing
leadership groups and networks such as the Australian Association of
Cancer Registries
We are incredibly excited by the discussions we facilitated
last week and want to thank all attendees as well as Sanchia Aranda for her
facilitation. We also pay a special thanks to our Consumer Reps, Dr Andrew
Smith, Dr Jodi Steel, Louise Sinclair and Jodie Lydeker, from our project
steering committee who were also in attendance to ensure that the consumer
voice was present in everything discussed.
The day after the roundtable, we were delighted to be hosted
by the Peta Murphy MP and Bridget Archer MP as part of the Parliamentary
Friends of Women’s Health for a breakfast panel discussion at Parliament House.
We welcomed over 50 guests, including politicians, health professionals, and
people living with metastatic breast cancer at Parliament House, with many
others joining us virtually from across Australia as well. Assistant Minister
for Health and Aged Care Ged Kearney gave an opening address and welcomed
everyone to Parliament House.
Our panellists, Peta Murphy, Sanchia Aranda, and BCNA
Consumer Representative Lisa Tobin made reflections on both the preliminary
outcomes of the roundtable, as well as what ‘visibility’ would mean to those
living with metastatic disease. We are happy to report that we have recorded
the breakfast panel and will shortly have it available for on-demand viewing.
Some key quotes from the breakfast panel:
Assistant Minister Ged Kearney - Today and yesterday's round table is
another example of the incredible work that the BCNA and all of you are doing
to save lives. And I can assure you that alongside the Minister for Health and
Aged Care, who sends his warm regards today, the wonderful Mark Butler, we are
absolutely committed to this cause with you. With your help, we're working to
make the health system better, particularly for people affected by cancer and
breast cancer. We can't do it without you. Please keep up your energy. Please
keep up your good work because we need each and every one of you if we are
going to beat this terrible disease.
Peta Murphy – Don't get me wrong, I am so pissed off
that I have metastatic breast cancer and would do anything to have not had it.
But when I'm in these sorts of rooms, there's a part of me that thinks that
it's an amazing opportunity that I've been given by having it to be part of
this sort of community, but also to play a small role in what all of you are
going to achieve. So never ever for a second think that anything that you're
doing, even if it takes 25 years to get the result, isn't making a difference.
Sanchia Aranda – One of the key messages that came out of
yesterday was that data isn't abstract, every data point has a person at the
end of it is about the people. And at the moment, our cancer system models of
care are built around diagnosis and getting people into treatment. They're not
built around ongoing systems of care.
Lisa Tobin - I want better understanding in the general
community because people never understand that we never finish treatment. That
when we talk about the war and early breast cancer and beating it, that doesn't
apply to us. And I know a lot of metastatic ladies don't like that because our
war won't finish and there is no finish line. So, I really want everyone to be
more aware of what we go through.
Thank you so much for supporting this work and we look
forward to sharing more formally with you very soon. If you have any specific
questions, please reach out to the Policy & Advocacy team at policy@bcna.org.au
Hi @arpie I have been advised that we had an external organisation at the breakfast recording the event that will be available on-demand in the coming weeks.
@arpie and @Mez_BCNA. I was shocked to learn there is no data on metastatic breast cancer. Out of sight and out of mind!! Easier to just look at breast cancer as the success rate reads better doesn't it. Metastatic data is so important to determine funding and services needed for people with this disease.
We’ve recently updated our system, so the way you start a new discussion has changed slightly. We know that any change can be a little confusing at first, but we’re here to help make it as easy as po...
Hi, I only just got my breast cancer diagnosis 1.5weeks ago and initially it was tentatively said to be Stage 3 due to being grapefruit sized and lymph node involvement. Then a couple of days ago afte...
Hi, I'm all very new to this being diagnosed only 7 wks ago with stage 4 metastatic breast cancer (triple positive) which has spread to my bones. I am 51 with 2 children. I had only had my first ma...
I’m new to this group. I’m 43 years old and today I was told I have ER, PR negative, HER2 positive metastatic breast cancer. I have mets in lymph nodes, bones and liver. No symptoms- only had a mammog...
morning all I have just been informed that I have to have a biopsy on Friday morning an ultrasounded guided core biopsy two breast lesions and a fine needle asoriate f a lymph node to say I am petri...
https://www.youtube.com/watch?v=-Hku5PtYzbk
