Asymptote: answering the dreadful question

Working in a specialty that is almost overwhelmed by ‘2 week wait’ referrals (patients who are sent by their GPs with a suspicion of cancer), I am often asked, ‘How long?’ For some patients, inevitably, are found to have incurable disease. It is the job of me and my colleagues to provide an answer.

Frequently, it is our first meeting. Their scan may have been requested by another doctor, or they may have gone ‘straight to test’ in order to speed up the diagnostic process. The meeting is therefore an intense one; daunting for the doctor certainly, but that is nothing compared to the distance the patient must travel in the ensuing 20 or 30 minutes.

They were referred with a ‘suspicion’ of cancer. A condition of being on the 2-week wait pathway is that the referring doctor should have told them that cancer was on the cards. There is a box on the referral form that must be ticked, confirming that this conversation has taken place. Nevertheless, it still comes as a shock (indeed, in one survey of 160 patients, 49% did not realise that cancer was the primary concern [1]). Sometimes, it seems to me, the ease with which patients enter the pathway, the very large numbers, diminishes its significance.

If you go to a GP with new gastric, oesophageal, bowel, chest or bladder symptoms, there is a good chance that you will be referred on the 2-week pathway. It guarantees a rapid appointment. Any scans or endoscopies that need to be performed will be prioritised; the request will go to the top of the pile. Within 2 weeks there should be an indication if the problem is cancer, or something less serious… or nothing at all. For the fact is, cancer is still an unlikely cause of the symptoms, statistically. So when it is found, it comes as a surprise. A horrible surprise.

The point of the 2-week wait system is to find cancer before it has spread or grown too large to operate on. Sadly, it is still often too far gone. In these situations, one of the first questions a patient or their relative/partner may ask is, ‘How long?’

They mean, of course, ‘How long have I got?’

There are many ways to respond. As a doctor sitting before a patient whose whole life has just collapsed, I want to give a truthful, accurate answer. But I cannot. I am honest about this. I might say, ‘If I give you a number, in months, maybe years, I will probably be wrong.’ That is the truth. But I have already put the units out there – months. ‘I have been proved wrong so often,’ I say, to emphasise that this is no science. There are so many factors in the equation – the tumour’s ‘biology’ (is it ‘aggressive’? – well presumably, but this is our first meeting, I do not know how long it took to reach this stage); response to chemotherapy, should they choose to have it, if it is offered by the oncologist; their vital spirit (if that is really a thing). An optimal combination of these factors may sustain the patient for one, two, three years. Alternatively, the tumour may race ahead, suppress the appetite, steal the muscles to reveal the bones below, and cause death within 8 weeks. I just do not know.

It is okay not to know. It is reasonable to admit it. But it does not help them. They need some sort of orientation. There are matters to see to, family members to inform. How can I leave them with nothing, with no facts at all?

There are facts. For most cancers the data has been analysed. The trouble is the favoured metric is ‘five year survival’. For example, look at the Cancer Research UK website for pancreatic cancer. It has a table showing survival at 1, 5 and 10 years. The numbers are 20%, 3% and 1% respectively. What does that tell you, as a recently diagnosed patient? Or, from my point of view as a doctor, what message do these numbers give that I can communicate to the patient? Well, the 10 year number, 1%, appears irrelevant; no point mentioning it at all. The 5 year stat is 3%. That’s basically the same as the 10 year stat – i.e. no-one really makes it that far. 3%. 3 in a hundred. Less that 1 in 20. Is that me? Unlikely. Who’s going to make plans on that figure? So what about a single year? 20%. A tangible number at least. To be in this group one needs to be lucky, one presumes. Non-aggressive, a response to chemo, a positive attitude. But… how long? 1 and 5 year survival rates don’t tell you that.

The truth is, you must wait and see. Wait until you see the oncologist. Wait until the first scan after chemo – is it bigger, smaller, or the same? Now is too soon. I’m sorry, I cannot make a prediction.

Understanding is asymptotic to reality. The gap between the estimate and the truth gradually diminishes as time passes, but even near the end, when the harsh reality becomes clear, there is no absolute certainty. When the lines do touch, when the timeline is ultimately severed, the patient is longer conscious. Only then, in the realm of the infinite or its opposite, is there certainty.

Not before.

 

Reference:

[1] Cummings R, Vincent M. Two-week cancer referrals: what do you tell the patient?. Br J Gen Pract. 2010;60(578):689-90.

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