Metaphors for malignancies

 

Published in 20-27 August BMJ

How does the biggest trial unit in Europe balance the individual needs of hundreds of patient volunteers with the demands of participation in studies of treatment? Stephen Ginn reflects on a two part radio documentary

Of all maladies, few so occupy human fears and efforts as cancer. This is not without justification because many of us will eventually receive this diagnosis. For an individual, cancer brings uncertainty about the future and places strains on close relationships. In many cases the disease will progress and be accompanied by failing health and prolonged treatment. Western societies, which venerate youth and are on uneasy terms with death and decay, provide little preparation for a terminal diagnosis.

The complexity of the disease is perhaps why cancer and its treatments are imbued with metaphor. Although many nuanced concepts are understood in more familiar terms, cancer is unusually well suited to be described in this way. The martial metaphor is the most common. A patient (a soldier) fights cancer (the enemy) with chemical, biological, and nuclear “weapons.” Another metaphor is that of a journey. This is more applicable when thinking of cancer as a chronic disease, where the trajectory through life is diverted, leading to new goals and redefined definitions of progress.

Responses to cancer are the subject of Behind the Scenes at the Christie, a two part BBC Radio 5 documentary. Based in Manchester, the Christie is the largest cancer treatment centre in Europe, treating 40 000 patients a year. It is also the largest early phase clinical trials unit in the world, and at any one time 200 treatment trials are taking place.

In the programme, presenter Geoff Bird interviews the patients, doctors, and nurses who take part in the Christie’s trials. Although there is a lot of interesting factual content, the exploration is primarily emotional as Bird focuses on the motivations and challenges that face the patient volunteers and staff. What emerges is a portrait of an institution with a clear sense of mission, and touching emotional portrayals of patients.

It is a remarkable thing to take part in an early clinical trial of a cancer treatment. The sacrifice is substantial because participants undertake to spend a substantial slice of their remaining life span in clinics, and to be given potentially harmful treatments from which they are unlikely to benefit. Yet their contribution is essential; all cancer drugs currently in use have started life as trial treatments.

The challenge for the Christie’s staff is to ensure that patients feel valued while maintaining the rigour of their trials. Managing patient expectations is also vital because there are no “magic bullet” treatments (another metaphor). A common complaint from trial participants is that they dislike the possibility of being placed in a study control arm. I was interested to learn that different types of cancer bring their own challenges. Patients with lung cancer experience a lack of sympathy as a result of the perception that they are responsible for their own condition. Progress in breast cancer is slow because current treatments are fairly effective, and ethical approval for a trial is hard to obtain. Brain research has a lack of funding; patients with this cancer are often too disabled to fundraise.

Bird’s style is gentle and empathic, and the interviews that result are moving. His discussions with his patient subjects rarely venture far beyond their condition and relationship with the Christie, yet we also learn much about their lives and families. It is clear how much cancer becomes part of patients’ lives and how vital family support is to their recovery.

The motivation for a patient to take part in a trial with such a low chance of success is not what you might immediately expect. Some patients are holding out for a cure, but the narrative that Bird elicits is that participation in the Christie’s trials has lent them renewed purpose. In many cases trial inclusion affords them the opportunity to redirect the narrative of their lives from that of victim to pioneer.

Which metaphor best suits the Christie and its trials as portrayed in these programmes? With the martial metaphor the Christie could be an “experimental weapons division.” Bird may agree with this because he describes one patient as acting with “a quiet heroism.” Finding new sources of strength and purpose is more consistent with cancer as a journey. One story of transformation after treatment at the Christie is almost magical. Richard Jackson’s metastatic melanoma, which was advancing rapidly, disappeared after treatment with ipilimumab.

The approach of thinking about cancer in terms of metaphors has its limitations, and likewise this documentary leaves some stories untold. Patients for whom trials hold no appeal are mentioned only in passing. Similarly, the programme only occasionally profiles patients for whom treatments have failed. Bird’s interviewees are largely positive in their outlook, despite their prognosis, no doubt in part because of the practicalities of recruitment of interviewees and the requirement for reasonably upbeat radio, I wonder to what extent they feel obliged to behave in this way, a situation recently criticised by Barbara Ehrenreich in her book Smile or Die.

Of course no two hours of radio can do justice to a subject as complex as cancer treatment, and omissions are inevitable. These quibbles aside, Behind the Scenes at the Christie intelligently covers essential and unsung sacrifice.

BBC page

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