Update on data collection on secondary breast cancer

Hi everyone
First of all, the very fact you are talking about this issue here helps us to advocate even more strongly.  I'd encourage anyone that wants to have a chat with me to give BCNA a call (1800 500 258 and ask for me or a member of the policy team) or email us at policy@bcna.org.au.

We always incorporate the words and experiences of women when making our formal advocacy submissions to governments. So the more we hear and read - such as this blog conversation - the better informed we are to argue our case.

The good news is that Cancer Australia has now been funded - 2.4 million dollars - to collect and report national data on the stage of cancer when diagnosed. Over the next four years we should see significant improvements to the collection and reporting of secondary breast cancer as a result. We regularly check in with Cancer Australia and have made our position very clear on the need for better secondary breast cancer data.

I really do encourage you to get in touch with us via our email address or phone if you have any questions or need more information from us. We try to follow the blog conversations as best we can, but we do not have access to conversations in private groups so we don't always see what you are saying. It is definitely much better to get in touch with us directly if you have a query or issue you want to raise. We always love to hear from you.

Nic

Hi everyone
First of all, the very fact you are talking about this issue here helps us to advocate even more strongly.  I'd encourage anyone that wants to have a chat with me to give BCNA a call (1800 500 258 and ask for me or a member of the policy team) or email us at policy@bcna.org.au.

We always incorporate the words and experiences of women when making our formal advocacy submissions to governments. So the more we hear and read - such as this blog conversation - the better informed we are to argue our case.

The good news is that Cancer Australia has now been funded - 2.4 million dollars - to collect and report national data on the stage of cancer when diagnosed. Over the next four years we should see significant improvements to the collection and reporting of secondary breast cancer as a result. We regularly check in with Cancer Australia and have made our position very clear on the need for better secondary breast cancer data.

I really do encourage you to get in touch with us via our email address or phone if you have any questions or need more information from us. We try to follow the blog conversations as best we can, but we do not have access to conversations in private groups so we don't always see what you are saying. It is definitely much better to get in touch with us directly if you have a query or issue you want to raise. We always love to hear from you.

Nic

Hi ladies, I believe it's time we had an update on where things are at with the collection of statistics about secondary breast cancer in Australia. I think some more pressure needs to be put on those responsible for rolling this project out, so we can actually get some updates!

No-one knows how many women are diagnosed with this disease in Australia, how many are living with it, what the ages/geographical location/cultural background etc of are of these women, what care they are receiving and the care outcomes.

Research funding levels are usually based on data, which explains why approximately only 3-4% of breast cancer research funds are directed towards secondary breast cancer. Appalling stuff!

In the spirit of "rattling some cages" to raise the profile of this issue (and receive some sort of update as to what progress has been made and when a suitable minimum data set will be in place for secondary breast cancer), I've had a go at drafting a letter to local MP's and any other people/organisations who could do with a poke and prod to get some action happening! I thought maybe those who are interested could send the letter off to their MP's and see what sort of a response we get!

If you would like to help me rattle some cages, please feel free to send a private message through and I will send you a copy of the letter.  Thanks so much, Celeste ?

Thanks Nic, boy only 5% it seems like so many more than that. That is seriously just my luck. EBC 38  and ABC 47.  I look forward to reading lots of interesting stuff.. 

cheers Sharon

I was 35 at EBC diagnosis, and 35 for ABC diagnosis as well (37 now) and I also have wonderful nurses. All women should have access to that kind of care.

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. 

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

Nic