Metastatic Breast Cancer Awareness Day - 13th October 2022

Mez_BCNA

Today is Metastatic Breast Cancer Awareness Day.  Breast Cancer Network Australia (BCNA) will continue to advocate and be a voice for those diagnosed with metastatic breast cancer today and every day. 

BCNA announced today that there are over 10,000 people living with metastatic breast cancer in Australia. This figure is only an estimate because Australia’s cancer registries are currently only mandated to report the number of people diagnosed with cancer (incidence) and how many people die from cancer (mortality). This means we currently don’t count people who are living with metastatic breast cancer.

To read more about BCNA's call to improve the collection and reporting of metastatic data as well as advocating for improved services to address the currently unmet needs of this population - Click the link  Making
Metastatic Breast Cancer Count and Download issues paper: Making metastatic breast cancer count

You can also view last week's BCNA presentation  'Making Metastatic Breast Cancer Count' via this link. 

If you have any questions please call the Helpline Services Team 1800 500 258

wendy55

Hi @Mez_BCNA,
thank you for this information, it certainly was a surprise to learn that no numbers are are kept in terms of metastatic breast cancer,does nothing for our confidence thats for sure, nice to know that I am 1 person in approximately 10.000, still I keep going, and a big thankyou to all the other people who contribute to the metastatic breast cancer group here at bcna and to all the lovely ladies who continue giving their support and encouragement here on the main discussion page, its a long and lonely path that we tread,9 and a half years and still going, 9 and a half years of continual chemotherapy, 3 times a month at the moment,900ks a month travelling,but I will not give in, so to all of us with this crappy disease its nice to know that we have a day to acknowledge us.wendy55

Mez_BCNA

There is also an article in today's Herald Sun. I believe you have to be a subscriber to view online, however I have a snapshot of the article attached, it may be a little unclear though apologies 

arpie

@wendy55 - I am in awe of you and your medical team - you are one strong cookie xx.  All the best to you and your continuing treatment.  Your Onc should be knighted!!

Thanks for that Mez - you can download it & enlarge it & still read it ok.

That is absolutely disgusting that a Mets diagnosis isn't considered a 'new cancer' as it makes 'counting current cases' obsolete - specially if the recurrence is 10 years or more after original diagnosis/treatment, as in some cases with BC, Mets can be diagnosed even 24 years after, as has happened with 2 of my friends locally.  Currently they are going OK - as is another buddy in Qld diagnosed with BC Mets 3 years ago.

Whilst many don't use the 'cured' word - being NED for that period of time would definitely have many BC patients believing that they 'were done with it' ... so a new diagnosis as Mets would be absolutely gut wrenching. To not be 'recognised' as having it - is unbelievable.

For the Gov Health System to be NOT counting it and then patients being refused access to Breast Cancer Nurses & other essential Cancer resources ... is disgusting & is a real kick in the guts! Especially when those with Mets NEED to have access to the support of a Breast Care Nurse, exercise & diet information to be able to work with their team on having as meaningful a life as they can, for as long as they can, given their condition & ability to do it.

The 'current' figures (of ANY cancer) are obviously totally unreliable at this point in time if they aren't 'counting' Mets patients from an earlier diagnosis!  I know that there are many Mets Colon Cancer patients who present as Stage 4 straight up (once again, it happened to 2 of my friends locally - sadly, both of whom passed within 18 months of Mets diagnosis...)  But I guess as theirs was their 'first diagnosis' - maybe their cases WERE recognised in the figures?

How on earth do the Gov forecast realistic costs that will be needed into the future - to identify ongoing health budgets, if they pretend there are none?

It is Absolutely - 'head in the sand' type of stupidity.

noosa_blue150

I feel Part of the problem
lies with the data and our info systems not being clever /sophisticated enough - no unique patients identifiers  in Australia within health systems to allow counting properly .(means very difficult to identify patients as they move between hospitals and states: they get allocated different medical,record numbers )  states run independent health systems , and there’s public and private hospitals - cancer registries in each state compile stats and identify inpatient stays and diagnosis dates it’s not giving totally clear picture . 

This is example of Qld cancer registry which collects inpatient data and pathology info 

https://cancerallianceqld.health.qld.gov.au/qcr

wendy55

hi ladies,
just wanted to let those of you who may live in south australia, we now have a dedicated metastatic breast care nurse funded via the mcgrath foundation, she is based in the barossa valley if you want to look her up on their website,or message me and i will give you her details, i will be having a conversation with her next week,so will be able to let you know more then,

wendy55