The latest buzzword in cancer care is 'survivorship' - a word that has caused a bit of controversy since it was first used in the cancer reform strategy to describe the rapidly growing number of people living with or beyond cancer.

But, love it or hate it, survivorship is here to stay with the launch of the national cancer survivorship initiative in England and survivorship policies being put in place across the rest of the UK.

Macmillan Cancer Support is co-chairing the initiative with the Department of Health, so I have heard a lot of the debate about the merits or otherwise of the word survivorship.

Some think calling people "cancer survivors" is an unhelpful Americanism that does not sit well with the British desire to avoid the language of victors and victims. Others think a new word is exactly what is needed to describe a relatively new phenomenon.

The most important stakeholders in the debate, people affected by cancer, broadly like the term. A discussion forum on our website has been generally positive and a workshop of more than 100 people last February was also supportive.

Without wishing to diminish the views of some, I am pretty relaxed about the debate - sometimes I call people "cancer survivors" and sometimes I call them "people living with or beyond cancer".

Focus on survival

Debate about the word must not deflect attention from the survivorship agenda, which is crucial to the future of cancer care.

In July, Macmillan revealed there are two million people who have had a cancer diagnosis living in the UK. And this number is predicted to grow by more than 3 per cent each year. This includes 33-year-old Beth from Surrey, who was diagnosed with cervical cancer in 2005. She is one of the people we highlight in our new booklet, Two Million Reasons, which sets out Macmillan's survivorship vision.

Having undergone successful treatment, Beth told us: "I'm still not sure whether I've 'had' cancer or I 'have' cancer. When does it become the past tense?" For many people, cancer lurks in the background - often for the rest of their lives.

And it is not just the emotional effects that remain. Survivors face numerous practical, medical and financial issues as well.

People who have finished treatment tell Macmillan they have difficulties getting their lives back. They may experience severe fatigue or problems with their memory, or find it hard to maintain a sexual relationship.

Those who want to work often struggle to get their jobs back and many face financial pressures. Some people face the debilitating effects of cancer many years after treatment, including incontinence and lymphoedema. The survivorship agenda is about helping these people live as normal a life as possible, both while they have cancer and afterwards.

Room for improvement

The limited evidence we have so far suggests the quality of care and support for people living with or beyond cancer is, at best, mixed. Follow-up cancer services tend to focus on the medical aspects of cancer and do not address people's other needs. Many of the generic services for people with long-term conditions have not been designed with cancer in mind because people with cancer did not used to be around in the long term.

One of the first things the national cancer survivorship initiative did was launch 18 pilot sites in England and Wales to see how post-treatment services for people living with or beyond cancer can be improved. And we are looking to launch more pilots soon. The results of these pilots will be used to persuade local commissioners that health and social care services need to change.

At Macmillan, the really controversial thing about survivorship is not the word: it is the fact that if we do not start meeting the needs of the two million people and rising, we will leave a ticking time bomb that in 10 years' time will prove difficult to disarm.

You can read more about the survivorship agenda, including Macmillan's survivorship booklet Two Million Reasons, on our website

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