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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 types with very different disease burdens and trajectories, with different requirements for palliative and supportive care. Some will have a high symptom burden from the start, and may need constant attention given to active cancer treatments and pain management, while others will have long periods of stability when patients feel relatively well.

Some will have advanced cancer at the first point of diagnosis (eg, many people with myeloma) while others will have an apparently successful initial treatment and then a gap of months or years before diagnosis of metastases (eg, hormone responsive breast or prostate cancer). The medical treatments of those patient groups may be similar but their psychological needs may be quite different.

To add to the complexity, there is a great deal of variation even among patients with the same cancer type and stage at diagnosis as increasingly patients will have more than one chronic illness.

Incurable but treatable cancer often has an uncertain disease trajectory. People may live for several years with advanced cancer, but data are often not collected routinely on the time of first recurrence as it is usually through imaging and blood tests rather than biopsy and so not recorded through cancer registration. There is surprisingly little information in the literature on multiple recurrences over time. With our current level of knowledge it is difficult for a healthcare professional to predict an individual's prognosis and in particular to manage the change in emphasis from a focus on treatment to a focus on palliative care (box 1).

Box 1

Incurable but treatable case study

Julia Featherstone, 53, was diagnosed with ovarian cancer in February 2011. After treatment she was told that there was no further evidence of disease (NED) but three and a half years later in August 2014 she had a recurrence. Several cycles of chemotherapy have again meant that there is no evidence of disease but Julia remains on a three weekly maintenance check-up.

The experience has left her with post-traumatic stress disorder leading to depression and subsequently time off work. ‘This [depression] was hardly surprising,’ says Julia, ‘nearly five years in, something was going to give at some point.’

Transition points along the pathway can present significant challenges for patients and clinicians. When is anticancer treatment no longer appropriate or tolerated? When should end of life care be considered and discussed? Incurable but treatable cancer often involves multiple treatment decision points when treatments have stopped working and new treatments could be considered.

Before we explore the treatment decisions that need to be made and how these could be better supported, we need to consider which healthcare professionals will be involved in making these decisions with the patient. As a group, people with incurable but treatable cancer often have frequent appointments at clinic, and as a consequence place a high demand on health resources—often in secondary and tertiary care. We know, however, that secondary care is often not the only answer. Hospitals are well set up to provide acute anticancer treatment but are generally less well equipped to provide ongoing care and support for palliative symptom control, emotional issues and practical issues. Much of the palliative, practical and emotional support could be better provided through primary, community or social care working more effectively with specialist providers.

Traditionally primary care teams have not been involved in patient care if they are having active anticancer treatment under the care of hospital specialists. Consequently, it has been difficult for GPs to become experienced in the care of incurable but treatable cancer. Both patients and primary care teams may be confused as to the aims of treatment and may delay discussing what might happen as cancer treatment becomes less effective. Improved communication between primary, secondary and tertiary care is vital so that a patient can be more effectively managed.

Communication between clinicians and patients is central to the challenge of treatment decisions so that clinicians can have honest conversations at key moments. This means that patients have the earliest possible opportunity to consider the best course of action that will enable them to live as well as possible for as long as possible and have a dignified death in the place of their choice.

If this is to be achieved we need to consider new interventions that will enable patients and clinicians to do this. This means introducing the subject of palliative care, advance care planning and potentially also end of life care planning much earlier, when patients are stable. These conversations should become more urgent and detailed as the patient's condition deteriorates. While many people would naturally prefer to maintain a focus on living rather than dying, this should not be a reason for clinicians to opt out of important conversations, at the earliest appropriate opportunity. The main difficulty is to define when is the appropriate time for those conversations, as this is likely to vary between different cancer and between people with different personal circumstances.

A model of person-centred palliative care in the community implemented by a consultant-led multidisciplinary team (MDT) working closely with a primary care team can facilitate shared understanding, better communication and meaningful involvement of professionals from across care settings. Greater emphasis on early referral to such teams allows time to develop therapeutic relationships between the clinician and the individual, families and carers, ensuring that practical and emotional planning is considered. Such an approach both ensures good communication between the various clinicians involved and facilitates safe conversations about palliative and end of life care at an earlier stage—Macmillan Cancer Support's Specialist Care at Home programme is one example of this approach.

Self-management is another central element to improving experience and reducing demand on health resources from this group of patients. They need support to understand their illness, how to live with ongoing cancer, manage symptoms over time and balance the effects of ongoing treatment and the progression of the disease.

In ‘Defining chronic cancer: patient experiences and self-management needs’, Harley et al6 concluded that “For patients to do well in this cancer phase requires good self-management of symptoms plus taking an active role in accessing appropriate services as needed.” It is also important for the psychological implications of living with treatable but incurable cancer to be addressed, particularly those that arise from the uncertainty of their remaining life trajectory. People must be given the right emotional support to achieve the best quality of life.

While those working in cancer care are increasingly recognising people living with incurable but treatable cancer as a distinct group, wider society has not yet followed suit—living with cancer for several years while not being cured of it is not currently understood by many, whether it is other healthcare professionals, those involved in social care, or the general public.

However, as we become better at treating cancer and our understanding of trajectories in this group increases, we may end up in a situation where many people with certain advanced cancers such as metastatic breast and prostate end up dying with the cancer, rather than from it. It is not an unrealistic idea, albeit one that will present challenging personal choices between survival and quality of life.

As we move towards the concept of some cancers becoming a chronic condition that people live with for many months or years, we must also look at cancer within the wider picture of long-term conditions. Research commissioned by Macmillan and undertaken by Monitor Deloitte found that 70% of people living with cancer in the UK also have at least one other long-term condition.i Increasingly will we need to manage living with chronic cancer alongside other established long-term conditions, such as diabetes, cardiovascular disease and dementia?

The American surgeon and author Atul Gawande has argued that society and medicine are both presently too preoccupied with extending life at any cost, rather than focusing on achieving a good quality of life. Living well is vital for people at every stage of a cancer journey, including people with incurable cancer. Recognition of this distinct group provides a cue for us to rethink the way we approach their treatment and support to enable them to achieve this.



  • 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.