People living with secondary breast cancer are satisfied with their care but the information and support they receive could be vastly improved, according to new research by Breast Cancer Now.

Tuesday 13 October 2015      Health information
Secondary breast cancer patients are being left in the dark

Around 50,000 women and 400 men are diagnosed with breast cancer each year in the UK, and although many survive it is still not known exactly how many of these patients will go on to develop secondary breast cancer – cancer that has spread beyond the breast or armpit to other parts of the body.

Whilst secondary breast cancer cannot currently be cured, new and improved treatments are being introduced all the time meaning many people can live for months and sometimes years after diagnosis, but these patients have very specific needs and require regular monitoring alongside a joined-up approach to care.

In a survey conducted by ICM Unlimited amongst people living with secondary breast cancer, over half (53%) said that they received either too little or no information at all when they were first told that their breast cancer had spread and 30% said that they don’t have a named person at their hospital (usually a nurse) to call on for support.

Of those that received information when they were first diagnosed with secondary breast cancer, 87% said that they would like to have received something that was better tailored to their needs, and of particular significance was the 61% of those surveyed that said they felt excluded from the wider breast cancer community because their cancer is incurable.

To mark Secondary Breast Cancer Awareness Day 2015 (13th October) the UK’s largest breast cancer research charity have launched ‘Your Guide to Secondary Breast Cancer’ – an online, personalised guide for people affected by secondary breast cancer in the UK which details what they can, and should, expect from their treatment and care.

The guide, developed by health information experts with input from people living with secondary breast cancer, provides detailed information about the signs and symptoms to look out for when the disease spreads, making treatment decisions and maximising quality of life all with an aim to ensure patients have greater confidence in, and control of, their care. 

Baroness Delyth Morgan, Chief Executive at Breast Cancer Now, said:

“23% of the research that we fund looks specifically into secondary breast cancer and it plays a key part in all the work we do towards our wider goal to end this disease’s power over women’s lives.

“Our simple, effective health information is also designed to do just that for the estimated 35,000 people that are living with secondary breast cancer in the UK right now. By providing impartial, evidence-based materials that are easily accessible – and free – we are arming women with the facts they need to take back some of the control that this terrible disease takes away.”

The guide can be personalised both geographically and by treatment type for the user with an aim to help people understand, in their own time, exactly what to expect from their care and the options available to them.

Living with incurable cancer can be incredibly difficult to adjust to. That’s why Breast Cancer Now developed this tool to help people work with their doctors to make informed decisions about their care and ensure that everyone affected by secondary breast cancer receives the best possible treatment for them.

Emma Young, 37, is a single mum of three and has been living with secondary breast cancer for a year and a half:

“I have scans every three months, so you live life in chapters broken up into three month sections. You have a scan, then a two week wait for results and then you go into a room and you’re told your fate. I always go and I expect the worst so I won’t be surprised and to be told good news I still cry anyway because I’m so relieved. Then you go away again and live for a couple of months and go through it all again. My life is in chapters and I don’t know how my story is going to pan out.”

The guide also includes testimonials from women who have shared their experience of living with secondary breast cancer, as well as breast care nurses who help to provide care and support to women living with the disease.

Breast Cancer Now has an experienced in-house team dedicated to producing evidence-based health information that work closely with breast cancer patients, alongside experts in the field, to ensure the information they provide is accurate, balanced, up to date and meets people’s needs.

Visit the ‘Your Guide to Secondary Breast Cancer’ online guide.