Thousands of people in the UK are living with secondary breast cancer, when cancer spreads from the breast to other parts of the body and becomes incurable. But too many feel they’re not receiving the right information about the disease at the right time. To mark Secondary Breast Cancer Awareness Day (13 October), we’ve launched a new online guide giving expert information on the care and support secondary breast cancer patients can expect, from diagnosis through treatment and beyond.
Around 35,000 women are living with secondary breast cancer in the UK. This means that their breast cancer has spread from the breast to other parts of the body, commonly the brain, bones, liver or lungs. At the moment, when the disease reaches this stage, it’s no longer curable. Our researchers are determined to change this, and many of our brightest scientists are working to determine why breast cancer spreads and how it can be stopped.
We’ve seen a wave of new and improved treatments for secondary breast cancer recently, which have meant many people who have the disease are able to enjoy a better quality of life for months and sometimes years following a diagnosis. However, the realities of living with secondary breast cancer can be extremely complex, and from speaking to men and women currently undergoing treatment, we know that not everyone is receiving the best standard of care.
The elephant in the room
Secondary breast cancer is sometimes called ‘the hidden disease’. As one woman living with it told us, “I don’t look ill, so sometimes people forget that I have it.” We know from previous research that secondary breast cancer is often misunderstood by the public, and that those living with the disease can feel excluded or overlooked within the wider breast cancer community. Worryingly, the UK’s health service may also be letting down patients who desperately need support to fit the demands of this immensely difficult condition.
In a recent survey, half of all secondary breast cancer patients we spoke to said that they received either too little or no information at all when they were first told that their breast cancer had spread. Almost all of those surveyed said that they would like to have received information that was better tailored to their needs.
Guiding patients through treatment
To help tackle this issue, we’ve launched a brand new secondary breast cancer guide – an online, personalised resource for people affected by secondary breast cancer in the UK. The guide is developed especially for anyone who’s been diagnosed with secondary breast cancer, and explains clearly and compassionately what they can, and should, expect from their treatment and care.
We’ve worked in collaboration with health experts and patients to provide high quality, accessible, online information that they can tailor to their particular circumstances. For example, women can look for information based on where they live in the UK, the type of breast cancer they have and the different parts of the body their breast cancer has spread to. They can also watch videos from breast care nurses and other women living with secondary breast cancer on a range of topics, from first noticing symptoms, to fatigue and ways to manage it.
Knowledge is power
We hope the guide will empower anyone living with secondary breast cancer, and their loved ones, to have greater confidence in and control over their care. We want all secondary breast cancer patients to understand the options available to them so they can make informed choices. And we think it’s vital that everyone living with the disease – and those working to support them, such as breast care nurses – knows what standards of care patients can expect throughout their treatment, so they receive the support that they need and deserve.
If you have any questions or comments, please feel free to get in touch with us at firstname.lastname@example.org