UK: A Tale Of Our Time: The Complexities Of Cancer Diagnosis, Treatment And Survival

Last Updated: 29 April 2014
Article by Karen Taylor

Most Read Contributor in UK, August 2017

In our report Working differently to improve early diagnosis, which we published late last year, we highlighted the importance of early detection and diagnosis of disease and that from the patient's point of view, early detection and diagnosis not only prevents unnecessary pain and suffering, it can also reduce the scale and cost of treatment. We also pointed out that effective implementation of early diagnosis varies widely across the NHS and that for cancer, despite a body of research that indicates that early diagnosis is cost-effective due to largely to improved outcomes, cancer survival in England is poor compared with many other European countries, due to a combination of late presentation, delays in GP referral and variable access to diagnostic tests.

A new report1 Routes from Diagnosis: the most detailed map of cancer survivorship yet which looks in detail at the different and complex journeys cancer patients take after diagnosis was published on 4 April 2014 by Macmillan Cancer Support. Macmillan's smaller report Cancer's Unequal Burden, summarises the key findings from Macmillan's Routes from Diagnosis research programme, which brings together experts from Macmillan in partnership with strategy consultancy, Monitor Deloitte, and Public Health England's National Cancer Intelligence Network to show what happens to people after they are diagnosed with cancer, in more detail than ever before. This report on the first phase of Routes from Diagnosis provides a retrospective analysis of almost 85,000 cancer patients' interactions with the NHS in England over a seven-year period (2004–2011) and reveals what happens to people in England after they are diagnosed with cancer in more detail than ever before.

The patients studied in this first phase of the programme have one of four common cancer types: Breast cancer, Prostate cancer, Lung cancer and Brain or central nervous system (CNS) cancer. Around 140,000 people are diagnosed with one of these types of cancer each year in the UK, representing around 40 per cent of all new cancer diagnoses. Breast, lung and prostate cancer are the first, second and third most commonly diagnosed cancers in the UK respectively, while brain/CNS tumours together are the ninth. The relative five-year survival rate is over 80 per cent for breast and prostate cancer, around 15 per cent for brain cancer and around 10% for lung cancer. The findings from Routes from Diagnosis, however, reveal the stark reality hidden behind these simplistic survival rates and make the case for action to improve cancer care more urgent than ever.

The Cancer 's Unequal Burden report reveals the shocking variation in survival but also the long-term impact on survivors' health within populations of patients diagnosed with breast, prostate, lung and brain cancers. Despite the fact that one- and five-year survival rates for breast and prostate cancer have improved significantly in recent years2, surviving does not necessarily mean living well. The research shows that only one in five (20 per cent) women with breast cancer and one in four (25 per cent) men with prostate cancer will actually survive both long-term and in good health3. Other long term survivors4 have to cope with other serious health conditions such as heart, kidney or liver disease, get another type of cancer, or their cancer spreads or comes back. Furthermore,  people with prostate or breast cancer also have an increased risk (60 per cent and 40 per cent respectively) of being diagnosed with genitourinary problems such as infertility or incontinence.

The picture is even worse for people with lung or the most common form of brain cancer, glioblastoma5, for whom less than one per cent survive long-term and in good health. Indeed, fewer than one in three people diagnosed with lung cancer live for a year or more after diagnosis and one in five people with lung cancer die within just one month of diagnosis. Furthermore, lung cancer survivors alive five years after diagnosis have a 300 per cent increased risk of developing a new type of cancer compared with a 30 per cent increased risk for prostate and breast cancer survivors.

The research demonstrates quite clearly how much todays cancer story has changed from say 10 years ago and importantly just how complicated cancer diagnosis treatment and survival has become. Crude measures such as one- and five-year survival rates, while useful, present only a snapshot of this highly complex picture. The stark variations between what happens to people after they are diagnosed with different types of cancer makes the case for taking action even more urgent than previously thought.

While acknowledging that there is no one-size-fits-all approach to treatment and aftercare, the initial results from Macmillan's Routesfrom Diagnosis programme nevertheless highlight the need for the NHS to get much better at using robust data to understand the complex needs of people with different cancers so that services can be planned accordingly. The results also illustrate why there is an urgent need for further action to improve cancer care. The report calls for:

  • NHS leaders to take action to ensure every person with cancer receives the best treatment available, regardless of their age or where they live
  • GPs to use every tool at their disposal to improve early diagnosis, including encouraging people with cancer to remain physically active.
  • every person diagnosed with cancer in the UK to receive a 'Recovery Package' of care and support, to help reduce the burden of other concurrent health conditions and prevent cancer recurrence.

These initial findings from the Routes for Diagnosis programme resonate strongly with the views of the Centre on the importance of early diagnosis but importantly also make a clear and compelling case for more recognition to be given to what happens to patients after diagnosis. The findings also demonstrate clearly the importance of using "big data" to derive insights which in turn can lend robust support to service and system re-design and ultimately save lives. 

Footnotes

1 Macmillan Cancer Support (2014), Routes from Diagnosis: Painting the most detailed picture of cancer survivorship yet. The research provides a retrospective analysis of almost 85,000 cancer patients' interactions with the NHS in England over a seven-year period (2004-2011). Lung cancer survivors alive five years after diagnosis have 300% increased risk of developing a new type of cancer compared with a 30% increased risk for prostate and breast cancer survivors. http://www.macmillan.org.uk/Documents/AboutUs/Research/Researchandevaluationreports/Routes-from-diagnosis-report.pdf|

2 NCIN. 2013. Prostate Cancer Incidence, Mortality and Survival Rates in the United Kingdom. ONS. 2013. Breast cancer incidence, mortality and survival, England, 1971–2011. 

3 Here long-term is defined as surviving at least seven years after diagnosis and good health is defined as not having other health conditions serious enough to require a stay in hospital and remaining free of cancer during the follow-up period as detected using Cancer Registry and Inpatient Hospital Episode Statistics only. Outpatient Hospital Episode Statistics were not available for the study.

4 Alive five years after diagnosis.

5 Cancer Research UK. Brain, other CNS and intracranial tumours incidence statistics http://www.cancerresearchuk.org/cancer-info/cancerstats/types/brain/incidence/uk-brain-and-central-nervous-system-cancer-incidence-statistics#By6| Glioblastoma accounts for around 27% of all brain, other CNS and intracranial tumours diagnosed between 2006 and 2010.

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