You may find it shocking to know that, still today, we don’t have an accurate figure of the number of people living with secondary breast cancer. We also have no idea about how many people are diagnosed with the disease each year. A commonly used statistic is that there are around 36,000 people living with the disease, but this is only an estimate.
There was some progress towards this issue back in January 2013. The collection of secondary breast cancer diagnosis rates was made mandatory - something that Breast Cancer Care had persistently pushed for. However, since then, not only have we not seen any data published on secondary breast cancer, but there’s also evidence to suggest that hospitals are not recording the number of people diagnosed consistently.
Why does data matter?
Put simply: knowing the number of people with secondary breast cancer is the key to unlocking better care and support for people living with the disease.
Not having this data means we never really know about the outcomes of primary breast cancer treatments. Is one treatment option better than others in ensuring that fewer people go on to develop secondary disease? We don’t know.
It also means that we’re unable to plan properly the provision of care for people who do develop the disease. It’s difficult to plan support services without knowing the numbers who need that support. It’s also difficult to make the case for that support existing at all without the evidence to back it up.
The lack of a national data set for secondary breast cancer also means we lack collective information about the types of treatments patients are receiving; or how the quality of a patient’s life changes over time.
Ultimately, not having this information at our disposal means we are in the dark about many of the issues patients face. We have individual feedback from patients themselves, but we lack the wider view.
It’s true to say that there is a focus and commitment to ensuring that data drives developments in cancer services but the pace of change is slow and no one person or group is taking ultimate responsibility. That’s why we’ve launched this campaign to understand which hospital trusts are collecting data, what that data looks like and how they have made it work where so many others seem to be struggling.
We absolutely must level the playing field for secondary breast cancer and drive up improvements in care and treatment with the same vigour and commitment as we’ve done for primary breast cancer. And ultimately, that can only really start once we know the true picture of what we’re dealing with and how many people are living with this disease.
Get involved in our campaign today by emailing your local hospital trust to ask if they are collecting the number of people diagnosed with secondary breast cancer, using our step-by-step online form.
When Hannah’s mum was diagnosed with secondary breast cancer last year, it took a while for her family to adjust. She tells us how planning ahead helps her stay positive, and how hosting an Afternoon Tea gave her something to look forward to.