Forum Discussion
Update on data collection on secondary breast cancer
Hi all,
A few weeks ago some of our members in the Online Network were discussing concerns about the fact that data is not routinely collected on secondary breast cancer, the way it is when women are diagnosed with early breast cancer.
For those who aren't aware of this issue, when a person is diagnosed with cancer (including women with early breast cancer), their doctor must inform the Cancer Registry in their state and territory. The information collected in the Registry helps governments keep track of the impact of cancer in our communities, and helps in the planning and funding of services and support.
However when a woman is diagnosed with secondary breast cancer, this information is not required to be collected, leaving a massive gap in our knowledge and understanding of secondary breast cancer.
For many years BCNA (and a number of other groups) have argued that information should be collected on secondary breast cancer. So following on from the recent conversations in the network, we thought that it was time to compile an update on some of the behind the scenes work that has been going on, to keep everyone informed and up to date with the latest developments.
Work on collecting data on secondary breast cancer has been slow, but there have been some small steps forward.
If you would like to read this update visit our news page on our website. I hope you find it interesting.
We'd also be interested to hear any comments you may have on this issue.
Best wishes,
Michelle
30 Replies
Hi francesca_maree and Amy
Early breast cancer is also relatively uncommon in women under 40 (about 5% of cases according to the Australian Institute of Health and Welfare). I think it seems counter-intuitive to us because we tend to meet and talk to a lot of women in this age group unfortunately. Younger women with breast cancer make up a small percentage of the total number of Australians with breast cancer, but this is still far too large a number. Vocal women such as yourself (and women of all ages!) make all of us here at BCNA even more determined and focused on ensuring that women with secondary breast cancer are supported, empowered and well-informed.
You can read about our current secondary breast cancer strategy if you want to read a bit more about our work in this area.
Amy, more breast care nurses for women with secondary breast cancer is another top advocacy priority for us! We actually included it in our 2013 federal election submission.
Also, are you signed up to receive the BCNA Research Bulletin? We have a regular spot focusing on research into secondary breast cancer. You might be interested to read this? If so, you can read about how to sign up here: http://www.bcna.org.au/news/research-bulletins
Again, I can't express enough how committed we are to ensuring that women with SBC are supported. We do not, and could not ever possibly, forget about you.
Hi francesca_maree and Amy
Early breast cancer is also relatively uncommon in women under 40 (about 5% of cases according to the Australian Institute of Health and Welfare). I think it seems counter-intuitive to us because we tend to meet and talk to a lot of women in this age group unfortunately. Younger women with breast cancer make up a small percentage of the total number of Australians with breast cancer, but this is still far too large a number. Vocal women such as yourself (and women of all ages!) make all of us here at BCNA even more determined and focused on ensuring that women with secondary breast cancer are supported, empowered and well-informed.
You can read about our current secondary breast cancer strategy if you want to read a bit more about our work in this area.
Amy, more breast care nurses for women with secondary breast cancer is another top advocacy priority for us! We actually included it in our 2013 federal election submission.
Also, are you signed up to receive the BCNA Research Bulletin? We have a regular spot focusing on research into secondary breast cancer. You might be interested to read this? If so, you can read about how to sign up here: http://www.bcna.org.au/news/research-bulletins
Again, I can't express enough how committed we are to ensuring that women with SBC are supported. We do not, and could not ever possibly, forget about you.
Thanks for getting back to us. I agree that there seems to be more than 3% of women under 40 living with ABC. I was diagnosed at 40 (43 now) with ABC from the start (like Mary-Lou does that mean my case was never even reported?).
I am 'lucky' because I have a wonderful breast care nurse who is there for us ladies with ABC. She is a great advocate for us. Why can't evey woman with ABC have access to such support?
While I understand the need to promote awareness about early breast cancer, people need to also be educated about secondary breast cancer and those that are living with this disease. More funding definitely needs to be allocated into research. Anything that BCNA can do to help us in getting the message out would be truly appreciated.
Please don't forget about us; while it may be 'cheaper' to let us die in monetary terms let's not forget the human side of our stories - our children, partners, parents, friends - who also find it difficult to get support while they go through this journey with us.
Hi everyone
It's great to see this discussion re-kindled.
Data collection for secondary breast cancer continues to be an area of advocacy for us. We don't have an update on the WA and Victorian trials just yet, but we are in regular contact with Cancer Australia and will update with further information as soon as it comes through. The projects are quite extensive (they are trialling different methods of collecting data on the stage of the cancer at diagnosis and at recurrence) so they really want to get the process right before looking at implementing a national method of data collection.
It is really difficult to make accurate statements about secondary breast cancer statistics. I really wish I could answer all your questions about statistics with confidence. There is no concrete information about how many women in Australia are currently living with secondary breast cancer, unfortunately.
That said, researchers have made some estimations about secondary breast cancer in Australia. They predicted that around 3000 Australian women (all ages) are diagnosed with secondary breast cancer each year, with around 9000 Australian women living with secondary breast cancer at any given time.
They estimated that around 3% were aged less than 40 years, 12% between 40-49, 23% between 50-59, 25% between 60-69, 26% between 70-79 and 12% 80+.
I just want to stress again that these numbers are projections or estimations (very educated guesses). They are not quite as reliable as data collected through national cancer data registries, which is why we are advocating for improvements in this area.
I hope this information is useful to you. I would hate to think that any woman with secondary breast cancer feels forgotten by BCNA - I want to assure you this is certainly not the case. We will continue to support and advocate for women with secondary breast cancer. Get in touch if you have any further questions and take care
NicHi everyone
It's great to see this discussion re-kindled.
Data collection for secondary breast cancer continues to be an area of advocacy for us. We don't have an update on the WA and Victorian trials just yet, but we are in regular contact with Cancer Australia and will update with further information as soon as it comes through. The projects are quite extensive (they are trialling different methods of collecting data on the stage of the cancer at diagnosis and at recurrence) so they really want to get the process right before looking at implementing a national method of data collection.
It is really difficult to make accurate statements about secondary breast cancer statistics. I really wish I could answer all your questions about statistics with confidence. There is no concrete information about how many women in Australia are currently living with secondary breast cancer, unfortunately.
That said, researchers have made some estimations about secondary breast cancer in Australia. They predicted that around 3000 Australian women (all ages) are diagnosed with secondary breast cancer each year, with around 9000 Australian women living with secondary breast cancer at any given time.
They estimated that around 3% were aged less than 40 years, 12% between 40-49, 23% between 50-59, 25% between 60-69, 26% between 70-79 and 12% 80+.
I just want to stress again that these numbers are projections or estimations (very educated guesses). They are not quite as reliable as data collected through national cancer data registries, which is why we are advocating for improvements in this area.
I hope this information is useful to you. I would hate to think that any woman with secondary breast cancer feels forgotten by BCNA - I want to assure you this is certainly not the case. We will continue to support and advocate for women with secondary breast cancer. Get in touch if you have any further questions and take care
NicHere's another link featuring a radio interview with the lovely Amanda Rynne and Maxine Morand talking about the crucial issue of collection of statistics for ABC. It seems that everyone agrees that this is an important issue...
- There was just a story on Today (hats off to them) about a beautiful young lady with ABC, lobbying her super fund to pay out her life insurance after her secondary diagnosis. She's apparently not dying quickly enough to get access to it, but that's another issue... The only problem I saw with the story was that there were no stats to go along with it. The media LOVE stats, as they make it really easy to paint a more compelling picture. We need to be able to quote stats, so let's start collecting them. Just as the media constantly quote "one in 8 women will get breast cancer", we need something to be able to quote to show what an important cause this is. For example... X% of women with breast cancer will eventually succumb to it. Or X% of women living with secondary breast cancer are under the age of 40. I'm not expecting to be able to quote these stats immediately, but we need to be able to quote them in the future.
- There was just a story on Today (hats off to them) about a beautiful young lady with ABC, lobbying her super fund to pay out her life insurance after her secondary diagnosis. She's apparently not dying quickly enough to get access to it, but that's another issue... The only problem I saw with the story was that there were no stats to go along with it. The media LOVE stats, as they make it really easy to paint a more compelling picture. We need to be able to quote stats, so let's start collecting them. Just as the media constantly quote "one in 8 women will get breast cancer", we need something to be able to quote to show what an important cause this is. For example... X% of women with breast cancer will eventually succumb to it. Or X% of women living with secondary breast cancer are under the age of 40. I'm not expecting to be able to quote these stats immediately, but we need to be able to quote them in the future.
I agree with all the comments above and it is very very sad.
We are the forgotten ones. We have a voice and we strive every day to stay alive. PLEASE Mr Stat man hear us we NEED answers, we NEED help, we NEED to stay alive, we NEED a cure.
We are young women some with families we are people.
It is funny no it is sad actually that you only see the nice "pink" stories on the front of the newspapers but a story of abc goes to the middle or back of the paper we are just as important as everyone else. Dont' get me wrong having ebc is crap and I wouldn't wish it on anyone but having abc is struggling to survive every single day financially, medically, physically and mentally.
Maybe as a group we can do something to put forward to the governent to hear our stories. I promise even if it is the last breath I take I WILL get someone to listen to us, to help us, to make us the unforgotten.
Cancer is scary for all of us. EBC and moreso for ABC ladies. So let's stop sugarcoating and get the facts right. Our friends with ABC need to be heard and accounted for. This cannot be done while the numbers are not being compiled correctly. There will be minimal support for ABC if there is apparently not many out there presenting with it. WE know there are more out there than the statistics show and they need to be accurate for all of our sakes. Databases need to be updated and entered properly. Lets give our ABC ladies the support that they need.
