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Incurable, but treatable: how to address challenges for an emerging group
  1. Jane Maher1,
  2. Galina Velikova2 and
  3. Adrienne Betteley3
  1. 1Joint Chief Medical Officer, Macmillan Cancer Support; Honorary Consultant Clinical Oncologist, Mount Vernon Cancer Centre, UK
  2. 2Professor of Psychosocial and Medical Oncology/Consultant Medical Oncology University of Leeds, UK
  3. 3End of Life Care Programme Lead Macmillan Cancer Support, UK
  1. Correspondence to
    Professor Galina Velikova, Leeds Institute of Cancer and Pathology, University of Leeds, Bexley Wing (Level 4), St James's Hospital, Beckett street, Leeds LS9 7TF, UK g.velikova{at}

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The outcome for people with cancer has changed over the past 20 years. More people are being cured and more than half of all people with cancer will live a decade or more after diagnosis.

With the use of new cancer treatments1 ,2 and improved supportive care3 it is now possible for many people with incurable cancers to be managed and treated over relatively long periods of time with a variety of therapies which while not able to cure, can control symptoms, slow disease progression and allow people to live with their cancer. As new biological treatments emerge, this group is likely to grow in numbers in the coming years.

There are 2.5 million people living with cancer in the UK, set to increase to more than 4 million by 2030,4 and we can assume that as the wider cancer population increases this group is particularly likely to grow in size. However, we do not know how many people presently have ‘incurable but treatable’ cancer or what the size of the increase is likely to be.

Also, while we know broadly which types of cancer are likely to affect these people—namely some cases of metastatic breast, prostate or ovarian cancer, many cases of myeloma and some cases of lymphoma – and the particular sorts of problems they are likely to face, the data are currently very high-level, patchy and based on a number of assumptions.5

The lack of population knowledge is coupled with an incomplete picture of the needs of this group, but we do know that they use significant levels of healthcare resource from primary and secondary care. We need to prioritise getting a better understanding of the numbers, needs and experiences of these patients.

The category of ‘incurable but treatable’ cancer includes several cancer …

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  • Competing interests None declared.

  • Provenance and peer review Not commissioned; internally peer reviewed.

  • i Research undertaken by Monitor Deloitte, commissioned by Macmillan Cancer Support. An extensive review identified ‘best available’ data from different care settings and perspectives. No single source provides definitive data on the prevalence of LTCs amongst the UK public and people living with cancer. UK-wide estimates in this document are therefore derived from the following ‘best available’ sources to estimate the population living with with cancer and another long term condition:

    ▸ Patient-reported data from Health Survey England and Scottish Health Survey, 2012

    ▸ Primary care data from Quality and Outcomes Framework (QOF) summary records, 2012–13

    ▸ Secondary care data from Hospital Episode Statistics, 2003–12

    To be considered long-term for the purposes of this analysis, a condition had to satisfy the following criteria. It must:

    ▸ Be a symptom or morbidity, and;

    ▸ Prevent the individual leading a ‘normal’ life, by being:

      – A chronic condition where there is a need for active management, or;

      – An acute condition leading to residual disability, and;

    ▸ Last longer than one year, and;

    ▸ Have been recorded:

      – At any time during the patient's life, or;

      – Between three years pre-cancer diagnosis and seven years post-cancer diagnosis for LTCs being actively treated within secondary care during cancer survivorship

    We assume that these data sources are representative of the rest of the UK and apply the proportion of LTCs in the cancer population by age to total cancer prevalence figures to derive our estimate of 1.8 million for 2015 and future projections. See executive summary for more details of the sources and analysis.