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Building the bigger picture

The story of cancer is changing. The UK population is ageing. As the risk of cancer increases with age, more people will be affected by cancer in their lifetime – one in two people born in the UK after 1960 will receive a cancer diagnosis[1]. Improvements in treatment mean that people are now living longer after their diagnosis.

There are now almost 3 million people living with cancer in the UK. This figure is projected to reach 4 million by 2030[2]. Cancer is increasingly about living with cancer, and many people require support several years after their initial diagnosis and treatment.

Our understanding is the result of years of research and analysis, working with data from the UK’s Cancer Registries, the NHS, Public Health England, the Office for National Statistics, the Cancer Patient Experience Survey (CPES) and other sources. In the last decade, key milestones have helped us build a picture of the population of people living with cancer.

Key milestones in the cancer story

The first pivotal study

It’s hard to imagine, but before 2008, nobody knew how many people in the UK were living with cancer. 

Macmillan and NHS England launched the National Cancer Survivorship Initiative. We commissioned a pivotal study by Maddams et al, which put a number to the issue – 2 million people in the UK were living with a cancer diagnosis at the end of 2008.

We commissioned a second study in 2012 and found the number was projected to grow by around 3% a year. We believe the growth rate is still a good predictor, so we still use this study as the basis for our projections today.

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Routes from Diagnosis

In 2014, we analysed seven years of data from the National Cancer Data Repository and Inpatient Hospital Episode Statistics, tracking almost 85,000 cancer patients’ interactions with NHS England.

The result was Routes from Diagnosis, which provides the most detailed picture we have of the health issues faced by people living with cancer in England.

You can read the full report on our website.

We have since partnered with Information Services Division (ISD) of NHS National Services Scotland to publish Scottish Routes from Diagnosis. This analysis looks at over 31,000 people diagnosed with the four most common types of cancer in Scotland: breast, prostate, colorectal and lung, from 2007 and 2012, with a 10 and 5 year follow up. Read the full report.

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'One size does not fit all'

An acknowledgment started to build that 'one size does not fit all' when it comes to the needs of people living with cancer. 

We used routinely collected data from the Office for National Statistics, the UK Cancer Registries, Cancer Research UK and academic publications on incidence, prevalence, survival and mortality, to take a closer look at the phases of a cancer journey and how they might differ for different groups of people.

A paper, Phases of Care (British Journal of Cancer), reveals how the types and intensity of people’s needs typically vary at different points. This can include diagnosis, treatment, living with the ongoing consequences of cancer, recovery and end of life.

You can find out more in our report summary.

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The three cancer groups

In 2017, we collated data on survival, incidence, prevalence, mortality and stage at diagnosis from statistical publications. We then analysed it to group cancer types by similar life expectancy.

The resulting paper, Three Cancer Groups (BMJ Open), is a framework that can be used alongside what we know about the rate of new diagnoses, to help predict the scale of need for services in the future.

You can find out more in our report summary.

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The cancer story is still unfolding

The next step in the evolution of our thinking is to define the times and types of need for people living with cancer more precisely. This is to ensure Macmillan and the wider healthcare system are there with the right support when people need it most.

The times of need for cancer (infographic)
The times of need for cancer (infographic)

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Find out more

  • Download our cancer story infographic and factsheet, which illustrate what we know about the growing population of people living with cancer
  • We have created a series of Rich Pictures, which summarise the numbers, needs and common experiences of twenty groups of people living with cancer
  • Read more about using cancer data on our blog, Think.Improve.Change.

References

  1. Ahmad AS, Ormiston-Smith N, Sasieni PD. Trends in the lifetime risk of developing cancer in Great Britain: comparison of risk for those born from 1930 to 1960. British Journal of Cancer. 2015;112(5):943-947. doi:10.1038/bjc.2014.606. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4453943/ [accessed July 2019].
  2. Analysis based on observed cancer prevalence in 2017 (2015 for Wales), published by the cancer registries for each nation in the UK. The relationship to complete cancer prevalence is derived from 2013 complete prevalence (Macmillan-NCRAS Cancer Prevalence Project). This is projected forwards using the UK growth rates in Maddams et al. (2012), resulting in an estimated 3 million in 2020, 3.5 million in 2025 and 4 million people in 2030 living with cancer in the UK. This includes all people who have ever had a cancer diagnosis; some people in this group may no longer consider themselves to be living with cancer.

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