Living longer with cancer is not the same as living well

The last two weeks have seen some remarkable cancer stories - whether it is great strides in the development of immunotherapy, or a better understanding of the effects of radiotherapy on the brain.

Such exciting advances might lead the casual observer to conclude that better treatment and more effective early detection mean that cancer is close to being “fixed”.

People with cancer must, of course, have both a timely diagnosis and access to the best possible treatment.

By the end of next year more than 1,000 people could be diagnosed with cancer each day and we need to get this right every one of them.

But for many of the 2.5 million people who are already living with cancer in the UK right now, being diagnosed early and treated in a timely fashion is, in reality, only the end of the beginning.

• Roundtable: What more people living longer with cancer means for the NHS
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The brutal side effects

Not everyone will come out of an episode of successful cancer treatment and be able to put it behind them.

Many suffer quite brutal life changing side effects. For example, a 2013 report by Macmillan found that an estimated 200,000 cancer survivors are left in pain following surgery, chemotherapy or radiotherapy.

And 70 per cent of cancer survivors are also living with at least one other long term health condition such as heart disease or diabetes.

‘Only one in three diagnosed with a common cancer at an early stage go on to survive in good health’

Macmillan’s Routes from Diagnosis research programme has found that while early diagnosis significantly improves someone’s chances of surviving cancer, it by no means guarantees that the person will live without serious illnesses afterwards.

Fewer than one in three people diagnosed with a common cancer - breast, prostate or lung in this study - at an early stage will go on to survive both long term and in relatively good health - for a definition of “good health” see Cancer’s Unequal Burden.

This is despite their early diagnosis and the cancer not spreading.

Interventions are needed if improvements in cancer treatment are to result in a healthier population of survivors.

And we need to see an acknowledgement that improved survival is not the only important outcome - quality of life matters too.

A lack of long term good health is shown to be the case even among people who are the most likely to survive their cancer.

Costs the system

Let us look at prostate cancer as an example.

Even men who are not in old age, don’t have a history of life threatening conditions, and are among the least deprived when diagnosed early still need long term support.

Even though almost all men in this group (95 per cent) will survive at least seven years after diagnosis, more than four in 10 (45 per cent) will be in poor health.

‘The NHS has to be properly equipped to provide care and support for people living with cancer’

And this costs the system money - Macmillan’s analysis shows that inpatient hospital care for people diagnosed early with the three most common cancers, including prostate cancer, who survive long term with poor health, costs NHS England around £270m per year.

It is absolutely crucial that we acknowledge that the cancer journey concludes at the end of treatment only for the lucky few, but that life is never the same again for many people who are treated for cancer.

The NHS has to be properly equipped to provide a coherent, long term plan of care and support for people living with cancer.

Not to do so is ultimately costly to NHS budgets, and gives an uncertain, daunting future to those affected.

Self-manage strategy

The updated cancer strategy for England, the key document currently being formulated, will inform how we deal with cancer over the next five years.

This much needed document is a fundamental opportunity to shape the path trodden by those who are diagnosed and treated for cancer every day.

This is about accepting that many people cannot just be treated and then dropped back into the hustle and bustle of life as if nothing has ever happened.

For many people it will be about mitigating the effects of treatment and having the support that is appropriate to them as an individual to make sure they do not just survive cancer, but actually go on to live well long after their treatment.

‘A shift away from “one size fits all” care to a more personalised model is badly needed’

A shift away from “one size fits all” care to a more personalised model which empowers people to self-manage is badly needed, and we hope the cancer strategy reflects that.

Coupled with this should be recognition that cancer impacts all aspects of people’s lives including in practical ways, such as work and finances, and that many people will need specialist support, including financial guidance or benefits advice, to deal with these impacts.

Effective, tested solutions to help people live well during and after cancer such as ensuring everyone has access to elements of the recovery package, a series of key interventions including a holistic needs assessment, must be adopted.

Similarly, a growing body of evidence suggests that enabling people to become physically active as a part of a healthy lifestyle will do much to ensure people live well, both during and beyond their cancer treatment. And the strategy, we hope, will outline how this can be implemented across England.

While we should - indeed must - look to ensuring a better future for people affected by cancer, it is equally vital that we address the present.

Juliet Bouverie is director of services and influencing for Macmillan Cancer Support