Last week, I attended the funeral of a friend who died of breast cancer at the age of 44. I admired her greatly for her determination never to be defined by her illness, and be a person not a statistic. Diagnosed in 2008 with secondary breast cancer that has spread to my liver and bones, that’s how I try to live my life too. But as I think about all the brave, funny, brilliant women I have met through the Younger Breast Cancer Network who have died months or years after a diagnosis of secondary breast cancer, the truth is that while we are so much more than statistics, the numbers do matter. They represent us in a way that memories, no matter how cherished, never can.

Britain Against Cancer

In December I attended the Britain Against Cancer conference in Westminster as a patient voice. This is the largest conference in the UK that brings together health care professionals, cancer charities, politicians, policy analysts, patients and carers to discuss the most pressing issues in cancer policy, and keep those issues at the top of the political agenda. It isn’t perhaps until I mention that there are an estimated 2.5 million people living in the UK with cancer and that breast cancer is the most commonly diagnosed type that you might start to realise the scale of what the conference attempts to grapple with. For breast cancer alone, Breast Cancer Now records that 50,000 women are still being diagnosed each year and just under 12,000 are dying. But what about the statistics between diagnosis and death?

Paying attention to the patient population

The most memorable moment of the conference for me was when Chris Carrigan, Head of the National Cancer Intelligence Network for Public Health England, said that “we never killed anyone by using their data. I’m pretty sure we have by not using their data”. It was heartening to see the collection of patient data and how to use it effectively stand out as a pressing concern.

There was a palpable sense of positivity that the publication of one year survival statistics and quarterly figures on early stage cancers to Clinical Commissioning Groups would make a huge difference. But tackling cancer can’t just be about prevention and cure. In my view one of the key battle strategies missing from the discussion was how we can change cancer from a killer to a chronic condition that patients are able to live with for ten, twenty years or more. The only way that will be achieved is by paying more attention to the patient population who, like myself, are living with disease that has spread and is treatable but incurable.

Early in 2015 a row developed about spending on cancer treatments, triggered by the former editor of the British Medical Journal Dr Richard Smith writing in a blog for the BMJ that cancer was a good way to die and that we should stop wasting billions trying to cure it. While I am dismayed by the implications of this perspective, there is no doubt achieving a “good death” after a cancer diagnosis is important, and this certainly was under discussion at the conference.

It’s quite right that making sure patients have the right to a good death should receive care and attention, but I felt incredibly sad that this seemed to be the primary focus of discussion about metastatic or stage IV cancer. While I am aware of my own mortality, and my friend’s funeral certainly brought that home, I don’t think about my life with cancer in terms of when I’m going to die. Who could do that for the seven years my disease has been classed as metastatic? I’m too busy living.

Although treatment for secondary breast cancer is to control not cure it, our lives matter. Many of us are stable on drug regimens that are compatible with living a normal life, and thankfully stage IV disease which until relatively recently was considered synonymous with an immediate terminal diagnosis has become much more complicated to define. Yet as a patient population we still seem to have a marginalised voice. In 2010 David Cameron made a commitment that data about secondary breast cancer cases would be collected and centralised but this is still not happening consistently and it’s a real let down.

Why capturing patient data is important

It is estimated that there are around 36,000 people currently living with secondary breast cancer in the UK. Capturing that data via a consistent national programme is the first step to enabling every person diagnosed with metastatic disease to have the best chance at living a good life for as long as possible after diagnosis. As a country with a world class health care system, our politicians and health care professionals simply can’t believe that talking about how to give secondary breast cancer patients a good death is doing enough. Our deaths matter, but our lives matter much more.

More information

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