Update on data collection on secondary breast cancer

I find this lack of reporting quite worrying. Are the statistics we get given from America and elsewhere, or are they just incorrect?

My main concerns are that I have been through two ops, chemo and radio. and I would like to know correct data on the likelihood of secondaries.  Is that why the doctors aren't forthcoming on information, because they don't know?

Thank you BCNA for being pro-active about this very important issue.

Hi Kato,

This is a complex and often confusing area, so I'm really sorry if I've caused you any worry.

Women are sometimes provided with statistics on how likely it is that your cancer may return, or how effective a particular treatment is likely to be. These statistics are based on research studies that are conducted into the particular type of breast cancer that you have, and other relevant information. These research studies are conducted all over the world (including Australia). Information is collected from the women participating in the research study, which is how the statistics are developed.

You can feel confident that these statistics are relevant, accurate and important.

This is quite different from the information that we would like to see collected through the Cancer Registries though. Information from the cancer registries will provide population wide statistics and information across all women with secondary breast cancer, not just those with a particular type of secondary breast cancer, or those undergoing a particular type of treatment. I hope that makes sense?

I would like to say that if you have been provided with statistics or data from your doctors, you can feel confident that they will be relevant and accurate for you. But if you're not sure, do feel free to ask your doctor to explain the figures further, or where they come from. Or you could consider asking a breast care nurse or other member of your treating team, if you feel more comfortable with them.

I hope that's helpful?

Kind regards,

Michelle

Thanks Michelle, yes what you said makes sense and I appreciate your explanation. It still sounds like this will give us more information and will be a positive step in our understanding of BC. Kylie x

I am glad that something is being done about this but saddened that it is so difficult and that there is such a lack of accurate information out there.  

It is another example of how we have been marginalised as a group of women. It makes me wonder about the resources spent on early breast cancer when the group of women with ABC are living with the threat of a shortened lifespan and one full of dealing with the disease and it's impact on our families.  How can services be provided when the information is so inaccurate and not even collected?! Crazy! 

So much effort goes into helping people with EBC and "after" but you are dropped a bit like a bomb once you get ABC.  I've barely had contact with a breast care nurse and have to be my own advocate but sheesh it can get tiring when you have non stop chemo, scans, appointments, side effects and a young family to look after.

I have often said to friends that the reason we are not talked about is that it is an economic argument not an emotional or social one - It is simply more cost effective for the natural course of the disease to be allowed to run - i.e. cheaper for us to die than keep alive.  I know that is brutal but I feel it is true.  I for one intend to keep going with the disease.  I have a five year old to see start school - while I fully intend to try to be here to see him finish school it is very unlikely with the way the disease is managed and dealt with now.

I m glad the BCNA is helping to try and rectify the situation.

Amanda x

I'm wondering if there is an update on this at all? I was diagnosed with secondary immediately after my initial diagnosis, before any treatment commenced. In some ways I feel it's an easier journey, as there's less uncertainty, however the literature out there for secondary breast cancer all seems to be aimed at people who've progressed from EBC after some time. I was simply told to read the info for EBC and advanced, as all of it would apply to me. I suppose it's quite rare to have metastases at diagnosis, but I'd like to know that someone is collecting data on this.