Understanding the cancer population

The cancer population is all of the people who have received a cancer diagnosis at some point and are still alive. There were two million people in the UK cancer population in 2010 and 2.5 million in 2015^[1]. We estimate that there will be four million by 2030. See our Cancer Statistics pages and download our factsheet [PDF] for the headlines on the total number of people living with cancer (cancer prevalence).

This is a very large and diverse group of people. Some of them will have received their diagnosis yesterday and others will have been diagnosed and treated 20 or 30 years ago. Their individual needs and experiences of cancer vary enormously and can change over time.

Cancer prevalence is another way of describing the cancer population. Prevalence is the technical term for the number of people with a particular disease in a specific population at a specific time. It can be expressed as a number or a rate (per head of population).

Incidence is the number or rate (per head of population) of new cases of a particular disease diagnosed in a specific population over a specific period. Cancer incidence figures do not include secondary cancers (metastases) or recurrences.

Studying the cancer population gives us insight into people’s cancer experiences and outcomes. It also helps us to forecast what the cancer population will look like in the future.

Epidemiology is the study of how often and why diseases occur in different groups of people. Epidemiological research tells us which groups of people are at the greatest risk of cancer, which treatments are likely to have which outcomes, and how different types of cancer affect people’s overall health.

For example, the UK has an ageing population. Older people are at greater risk of developing cancer, so we can expect cancer incidence to rise as the population ages. But people are living longer in part because we are getting better at treating cancer and other illnesses. Epidemiological research shows us that cancer survival rates have improved dramatically in recent decades. So we can expect to see more people who require long-term support to manage and treat their disease.

Macmillan supports people affected by all types of cancer, at all stages in the cancer pathway. Research into cancer prevalence, incidence and survival means we can identify how the cancer population is changing and adapt services accordingly.

For example, as cancer treatments improve, more people are surviving cancer. Many people in the ‘survivorship’ phase will require ongoing support to manage consequences of cancer treatment, which can include problems such as fatigue, depression and incontinence. We know that this segment of the cancer population is growing and will continue to grow in the future. As a result, as well as investing in better cancer diagnosis and treatment, we need to invest in better support for people living with the consequences of cancer.

• improve and develop our own services for people affected by cancer 
• help healthcare commissioners and providers to invest resources where they are most needed 
• educate policy-makers and the wider public about the numbers and needs of people affected by cancer
• help cancer analysts to understand the importance and the costs of the survivorship phase
• highlight inequalities, gaps and variation in services.

Having a good understanding of the cancer population helps us to provide more effective, tailored support to people living with cancer and their family and friends. The cancer journey is different for every person but there are some common themes and experiences that many people share.

For example, some people will live with cancer for many years. Their life might return more-or-less to normal, or they might need help managing or monitoring consequences of the disease and its treatment. Sadly, other people will be affected by cancers that are very aggressive and difficult to treat. However, even when people are life-limited, access to suitable treatments and effective palliative care can enable them to enjoy a good quality of life. Understanding the cancer population and the numbers, needs and experiences of the people in that population is the first step to providing them with better, more effective support.

Our Rich Pictures look at how people of different ages and ethnic backgrounds are living with and beyond different types of cancer.

Current cancer population research that is funded, commissioned or conducted by Macmillan includes:

• Prevalence projections 

Macmillan’s teams are working in collaboration with data providers and clinical experts to project how many people will be living with cancer in 2030. This information will help us, the government, and decision-makers across the healthcare system with making long-range plans and budget forecasts.

• Progressive cancers (recurrence, metastasis or second cancer)

Cancer sometimes returns following initial treatment, either in the same place or in a new site (recurrence or metastasis). Some people also develop a new primary cancer in a new location (a second or subsequent cancer). This progressive cancer can be devastating for the people affected, their friends and family. It also has implications for the medical profession in terms of quality of care, quality of life and cost. However, at present, there is no accurate way of measuring the incidence or prevalence of progressive disease, or the impact of multiple lines of treatment.

Macmillan and Public Health England’s National Cancer Registration and Analysis Service (NCRAS, formerly NCIN) are working together to build understanding of progressive cancer. We believe that there are great opportunities to improve the outcomes and experience for people with progressive cancers, with identification and quantification of the population as a key first step.