BRAIN CANCER - TIME TO DIAGNOSIS

A common theme emerging from the numerous conversations we've had with people living with primary brain cancer (and their families and carers), is that the time to diagnosis (the time between the first appearance of brain cancer-related symptoms and confirmation of a brain tumour - usually following an MRI scan in hospital) is often drawn out.

Although there is little evidence that an earlier diagnosis impacts survival, there is general agreement that it has to be better for the patient (and carer) to get the earliest possible diagnosis:

- the tumour is likely to be smaller and possibly more accessible for surgery

- the risks of both trauma and treatment (e.g. surgery & radiotherapy) may be lower

- there are likely to be fewer genetic mutations so it may be easier to treat and more likely to respond to treatment

- reducing the time to diagnosis may reduce the stress of not knowing/trying to find out what is wrong

To be able to reduce the time to diagnosis, we need to have some benchmark data, so we can better understand the scale of the problem and set the goal we wish to achieve. Unfortunately, this sort of data is generally not collected in Australia.

However, from UK data, we know that prior to recent advocacy around this issue, the average time to diagnosis was around 14 weeks, which was considered far too long. We also know that in the US it is currently around 6 weeks, which is a whole lot better, although ideally it would be a lot less than this.

Given that there is little Government data on this issue in Australia, we are appealing to the brain cancer/tumour community for help.

The information you provide will not be identifiable (we do not need to know your name or date of birth) and will be kept strictly in accordance with our privacy policy, which can be viewed here.

Our intention is to use this data to both inform us and add weight to our awareness and advocacy initiatives to reduce time to diagnosis. This has to be carefully planned as brain cancer is quite rare but many of the symptoms are very common.

Thank you in advance for helping us with this important initiative. The more information we can collect – the stronger our pitch to the relevant stakeholders will be.