This is the third in a series related to my cancer treatment. The first posting looked at blood and how its condition affects our mental state. The second, on patienthood, promised more reflection on the way being a patient changes your thinking about risk. So here goes…
At our first meeting, my surgeon said elegantly, ‘We don’t know what we’re really dealing with, until the lump is in the bucket’.
I can offer the following translation: ‘We have been treating you for months, with assumptions based on biopsies and imaging. But we won’t know anything for sure until we have physically removed and tested the tumour, and had a really good look around.’
Well, the lump went into the bucket and the news was good, as these things go. But there is a strict limit to certainty. As one of the specialist nurses put it, ‘Once you have had cancer, there is always some risk of it recurring. The point of treatment is to change this from being a higher risk to a lower risk.’
Of course, talking about risk is just another way of talking about death. You could fall under a bus tomorrow – someone, somewhere, has statistics on that probability – but most people do not go through the day thinking about it. This is partly because most people don’t think much about death, in general. But even those who are so inclined tend to do it in a hypothetical manner, to explore a personal anxiety, pursue an intellectual enquiry or delve into mythopoetics. A serious illness forces you into a much more instrumental reflection about death, and the uncertainties of life.
Oncologists use online tools, fed by research data from around the world, to calculate the benefit of various treatments on people in different categories. The main factors are age, rate of tumour growth (grade) and extent of cancer spread (stage). A breast cancer patient who is relatively young and healthy will get every type of possible treatment thrown at her, to maximise the chances of both overall survival (OS) and disease-free survival (DFS). For an older patient, or someone with health complications, the risks of treatment – which are very real – may outweigh the potential benefits.
The risk of dying from the specific new illness is measured against a baseline. Apparently, a woman in her 50s, currently in good health, is considered to have a general, all-purpose 10 percent chance of dying within 10 years from something or the other. Assume that the risk of dying from the newly diagnosed disease is a further 10 percent, you could think in terms of having ‘only’ a 10 percent extra chance of dying. Or you could think, ‘Shit, I’ve just doubled my chances’. Either way, a combined one-in-five chance does not feel very remote.
Medicine has become relatively successful in detecting and treating breast cancer. More women are surviving the disease, although more people are also getting it, in what doctors agree is now a western epidemic. The improvement has percolated into popular thinking. People often say, ‘Oh, I know someone who had that 5/10/15 years ago, and now she’s right as rain/never looking better/ playing 18 holes of golf.’ You feel like a party pooper if you point out that statistically, someone has to be in the percentile of people who die within a few years of diagnosis. The insurance world certainly has my number.
Most people make the link between risk and illness when they think about getting ill in the first place. The world is full of things that may be carcinogenic, and thus avoided. We try to control these influences, encouraged by a culture that sees ‘no risk’ as an achievable ideal, but who knows what triggers an individual case? Early on, I blamed personal factors such as stress, or the years spent subjecting my body to that giant experiment called IVF. But my case might be part of a more general trend, linked to diet or the environment.
You can think about risk without thinking about numbers – that is where most people start. We ask ourselves, what am I prepared to lose? A breast cancer patient will be more prepared to lose a breast than her life. The numbers then help make decisions: doctors may say that in a particular case, ‘breast conservation’ surgery plus radiotherapy is not more risky that mastectomy, and so she can keep both.
All the same, the patient usually has to travel a long distance to get to a place where numbers provide any help. Numbers are about long-term probabilities, and do not know us as individuals. Numbers are often misused, and have a problematic place in our society, where nothing counts unless you can count it. On their own merits, numbers can provide a fascinating extra way of evaluating the world. But from personal question to generic data, a translation is needed in both directions.
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