Incurable breast cancer numbers almost triple previous estimates. World first data
Mez_BCNA
Administrator, Staff, Member, Moderator Posts: 1,146 ✭
After 25 years of advocacy by BCNA, people with metastatic breast cancer (MBC) have finally been counted — at least in New South Wales.
In a data breakthrough that far surpasses previous estimates, the Cancer Institute NSW has identified there are 7900 (7850 women and 50 men) living with MBC in NSW alone.
This world-first announcement means people living with MBC are now visible in NSW, ensuring their needs are no longer overlooked.
Knowing how many people are living with MBC means we can plan a healthcare system, policy and services. This announcement will pave the way for all cancers to be counted and is a model that can be rolled out nationally and internationally.
To help ensure everyone is counted contact your state Health Minister and ask them to fast track the work of NSW in your state or territory.
For more information about the announcement, you can read our latest media release via the link Incurable breast cancer numbers almost triple estimates (bcna.org.au)
If you need our help?
We recognise the emotional weight of today's announcement on those affected by breast cancer. BCNA is here to provide support and resources to help you navigate through any fears or anxieties you may be experiencing. Please call our Helpline on 1800 500 258 if you need support.
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Comments
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Thank you @Mez_BCNA and all those who have helped make this happen.
I have just now written to the Queensland Health Minister and encourage others to do the same. Contact was easy as filling in an email template. With a state election on 26th October, we may have to write again if the government changes.
As someone with MBC this is truly a great start and a significant milestone. It is upsetting to think those outside NSW are still invisible and it is upsetting that the services we need aren't there because of it.
I really appreciate BCNA and the work you are doing.4 -
That's great news @Mez_BCNA - and not surprised that the numbers are greater than they 'assumed' .... and when they throw in all the OTHER metastatic cancers as well, they'll get a real shock, I reckon - as they all need such specialised treatments & meds - it is SO hard to understand they'd never been 'counted' before.
Well done @Cath62 for contacting the Qld Health Minister - and definitely, everyone in Qld with Mets should do the same - and not only for BC mets - ALL people with mets from any cancer xx
It was on Channel 9 News this evening - ...
https://www.9news.com.au/national/incurable-breast-cancer-numbers-almost-triple-previous-estimates/68991dea-d91d-4246-8972-05f76c04ae84
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@Mez_BCNA thank you to BCNA for the work you do. Its great news that NSW have included Mets patients in their numbers. No-one should be left behind. Yes we need to see this for ALL states now. To think 10,000 was an Australia wide estimate and NSW numbers come in at 7900. We do need to see how many is really Australia Wide.
Well done@Cath62 for contacting QLD Health Minister. I will be looking to write to the Victorian Health Minister too.2 -
And here are the contact details for the Federal Health & Women ministers ....
https://www.directory.gov.au/commonwealth-parliament/cabinet/minister-women
https://www.directory.gov.au/commonwealth-parliament/cabinet/minister-health-and-aged-care
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As I am newer to this experience compared to others I was absolutely astonished when I learned that no data was kept to know how many people were living with incurable cancer.Whilst I am not in that cohort I am absolutely committed to accurate information so all people and their families and communities can make informed policy and services decisions. Incredible work by the advocacy folks and people experiencing Mets 👏👏👏🌸3
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Sharing several examples of the media throughout this week:
https://www.abc.net.au/listen/programs/pm/-invisible-cancer-patients-counted-/104480980
https://www.smh.com.au/national/exact-number-of-patients-fighting-incurable-breast-cancer-uncovered-20241016-p5kixp.html
https://www.theage.com.au/national/nsw/lisa-s-cancer-was-forgotten-in-the-sea-of-celebratory-pink-now-she-has-been-counted-20241015-p5kifq.html
https://9now.nine.com.au/the-block/2024-all-stars-tom-calleja-sarah-jane-breast-cancer-charity-support-story/b344a846-1297-40a5-be51-b5e41b8511681 -
Just sent a message to the Victorian minister of Health. It would be nice to think that all the states have at least started. How awesome if Australia is the first country in the world with this info.4
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The Advocacy group that Dr Fran Boyle has started up will be of interest to all our members with Mets xx
Professor Fran Boyle, recently founded the Metastatic Breast Cancer Action Australia advocacy group
https://www.oncologyrepublic.com.au/australians-with-metastatic-breast-cancer-come-out-of-the-shadows/4746
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Great news that this data is now being collected. I wonder what it means that there are three times as many people living with Mets than previously estimated. Does this mean more people are progressing to Mets than expected or that people with Mets are living longer than expected, or both? It would be interesting to know more about what the data says 😊4
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Sent my letter to the Victorian Minister of Health. Knowing how many seems a very basic bit of information for further research.3
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@Beginner - I think the lower 'guestimate' was just because they honestly didn't know - and it was a total guess!
The quickest & easiest way to maintain the list from now on (for ANYONE diagnosed with Mets) - would be for all Pathology/Radiation companies to be required by law to report all new Mets diagnoses to the Health Dept - much the same as any other 'notifiable' disease is already: Examples of notifiable diseases include:- infections caused by bacteria such as legionella
- diseases or conditions caused by viruses such as influenza, COVID-19 and HIV (Human Immunodeficiency Virus)
- infections spread by contact, such as hepatitis
- infections spread through the gastrointestinal route, such as listeriosis
- sexually transmitted infections such as chlamydia
- diseases that can be prevented by vaccines, such as measles
- diseases transmitted by insects, such as malaria, or contracted from other animal species, such as brucellosis
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@Beginner our Policy team have provided a little more insight based on what we know:
It's a bit of a combination of more people living longer with metastatic breast cancer and the challenges of estimating a figure in the absence of incomplete data, but we don't believe more people are progressing to Mets than expected.
The 10,553 estimation of a national figure in our Making Metastatic Breast Cancer Count report was an estimation by epidemiologists using modelling and record linkage. They told us they felt this was probably an under-estimation and that they believe the real number was likely higher.
The reason we used the 10,553 figure is that they felt the data used to get to that number was solid and reliable (which is important when you are making big claims) and beyond that they couldn't be sure because of the lack of information available to them. They basically predicted a higher number but couldn't prove it, so we had to go with the safe estimate.
You may also like to check out the related reports:
- Time to Count People with Metastatic Breast Cancer report.
- Time to Count People with Metastatic Breast Cancer - A Way Forward
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