Cancer — the uncertainty factor

What are my chances?

From the moment you are diagnosed with cancer, you are plunged into a world of uncertainty.

In the first hours and days after the diagnosis, you may have no idea how advanced or aggressive your cancer is. In due course, typically over a period of weeks, your disease is tested and evaluated, “staged” according to the jargon.

This is typically a period of torturous uncertainty, when you have to wait for your test results for what feels like an eternity, not knowing how bad things are, and imagining the worst.

Layer on the experience of dealing with a big bureaucracy like the NHS, and it is no wonder that the patient often feels lost and alone.

Once the doctors put a label on it, saying you have this or that kind of cancer, and it is at stage one, two, three or four, you will be told what your treatment options are. For solid cancers, this could include surgery followed by chemotherapy; for blood cancers, you might go straight to chemo or be put on a “watch and wait” regimen.

A view from Prof Arnie Purushotham of King’s College

At this point, according to veteran breast cancer expert Prof Arnie Purushotham of King’s College, London, the patient typically says, “thank you, what are my chances?”

There is no easy answer to that question.

“You can look at the trials out there and you can extrapolate from a mass of data and say well, you know, you have an eight or eighty per cent chance of being alive in ten years.”

But the reality is that this kind of information doesn’t tell you what is going to happen to you.

Patients are not statistical data, but rather living, breathing individuals, with hopes and fears as well as bloodcounts and tumour markers – and however much you might want to study the alarming charts on the internet showing survival rates, the advice from Prof Purushotham is – don’t give way to the temptation.

Arnie Purushotham

These data are useful to the specialist, but terrifying and unhelpful for the individual patient.

Not knowing is the worst thing.

Not knowing is the worst thing. Once you have an idea what your treatment is going to be, no matter how invasive, the patient often comes to terms with it.

There may well be a rollercoaster ahead, but at least you are in the system, with a plan of action and a timetable, and you are surrounded by people who are there to look after you.

But, even if you are cured or told you are in remission, for the rest of your days you will live in fear that the cancer will come back.

With every year that goes by, you will be tempted to open a more and more expensive bottle of champagne. But a voice inside will always be saying: not so fast. With time, the chances of recurrence go down, but no doctor is going to give you an absolute reassurance.

How can the system help patients deal with this?

Doctors can do more to eliminate uncertainties that arise because of the medical process. At many clinics now, for example, there is a big effort to get tests done and results communicated on the same day.

That may be a very bruising experience for the patient, but at least the terrible waiting is removed.

Straightforward communication from doctor to patient is also key. Honest reassurance, when it can be given, is always welcome, together with the recognition that whatever confusion, anger and distress you might be feeling, is entirely normal.

There is some consolation in realising that you are not the first to go through that gamut of emotions. In fact, millions of people have been on the same journey.

Thanks to Prof Arnie Purushotham, professor of breast cancer at King’s College London, for his valuable time. See his full CV here:

https://kclpure.kcl.ac.uk/portal/arnie.purushotham.html

https://www.guysandstthomas.nhs.uk/our-services/consultant-profiles/cancer/arnie-purushotham.aspx#na

 

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