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

 

Thank you!

Thank you for your tremendous feedback to this blog since it went live earlier this week. A lot of people have dropped a note to say they like the interview with Lesley Fallowfield. Here is a great response from a leading oncologist:

Lesley Fallowfield’s influence has been profound, and formal teaching of communication skills is very much more widespread now than it was when I was a trainee. But still the emphasis is on oncologists, cancer surgeons, specialist nurses – that is, cancer specialists. We still hear horror stories from patients about how they first hear of their diagnosis, from non-cancer specialties like general medicine. Too many clinicians fear breaking bad news (new diagnosis, relapse and so on) – I’m not saying it is something to be relished, but doing this difficult job well can be just as much a rewarding challenge as many other professional activities we regularly perform.

This is a topic I will return to in future posts.

Meanwhile, it has been a busy week for cancer news. I pay tribute to Nicola Mendelsohn, head of Facebook in Europe, for coming out with the fact that she has incurable blood cancer:

https://www.standard.co.uk/news/uk/outpouring-of-support-for-facebook-europe-boss-after-revealing-cancer-diagnosis-a3758011.html

Nicola has been put on the “watch and wait” regime which means that the doctors won’t do anything about her disease until, and if, progresses. Having “been there, done that,” with almost but not quite exactly the same diagnosis, I have to commend her courage and to wish her well as the years go by.

There was good news for Nicola, me and others with blood cancers: superb results from new trials. See http://www.bbc.co.uk/news/stories-42920045

The other “c-word” in cancer is of course cure, and there seems to be a real hope that some diseases can be kicked into touch for long enough to be classified as cured.

 

Professor Dame Lesley Fallowfield: the science and art of cancer communication

There is something scary-sounding about Professor Dame Lesley Fallowfield’s job: she is a psycho-oncologist.

We all know what an oncologist is, but the word psycho conjures up the image of the shower scene in Alfred Hitchcock’s film of that name…but in the flesh, Lesley Fallowfield is not at all frightening.

Lesley has the reassuring but firm manner of the nurse that she once was, coupled with the authority that goes with being a pioneer in studying the emotional and psychological aspects of the cancer experience.

Now professor of Psycho-Oncology at the University of Sussex, she has personally trained many hundreds of leading oncologists in how to communicate better with their patients, and is thus the ideal first person to be interviewed for this new blog.

Dame Lesley

Sitting in the basement of the elegant Royal Society of Medicine in London’s West End, she explained to me how she found her way into this professional niche. After she had completed her training as a nurse, she studied for a BsC in experimental psychology and neuroscience, and then a PhD. The defining moment in her early career came when she visited a friend at the Royal Marsden hospital in London. The friend was suffering the after-effects of an early bone-marrow transplant, and was very poorly indeed.

Continue reading “Professor Dame Lesley Fallowfield: the science and art of cancer communication”

Why communications makes the cancer experience less awful

Years after the diagnosis, I was sitting in a clammy hospital chair, at last undergoing the tedious process of chemotherapy, poisonous goo dripping into my bloodstream. It wasn’t anything like as bad as the doctor had predicted: I barely felt sick and my hair didn’t even fall out.

I found myself reflecting on the connection between my day job – advising companies and individuals on how to communicate, often during times of crisis – and what I was going through. How should people talk to you when they know you have cancer, and how should you talk to them?

The first rule of professional corporate communications is to divide your audience into stakeholders: categories of people who matter to you in different ways. For a big company, these would include your shareholders, employees, customers, regulators, the media, all requiring a subtly different but fundamentally consistent message.

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Alive with cancer – why more of us are

However uniquely awful it is to be told you have cancer, the experience is one that many millions of us will have to go through.

The latest research shows that in the UK alone, some 50 per cent of the population alive in 2025 will get the disease. Count in their friends and relatives, and that means everybody is going to be touched by cancer, either directly or indirectly.

This is on the face of it very bad news: the incidence of this horrible disease is going up, for all sorts of reasons, and literally everybody will be affected as a result.

My mother remembers hearing her own mother and grandmother whispering in the back of a taxi in Manchester. That was the 1950s and they’d just visited a friend in hospital. My Mum, a child at the time, worked out that the friend had cancer. The word was unmentionable, a sure precursor of death, and sure enough the friend soon died.

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Hearing the Worst

“You are going to have a horrible time,” the doctor said, “a really horrible time.”

I had turned up for what I thought was a routine appointment with the consultant. He looked at his notes, then at me, before leaning over his desk and telling me that the test had come back positive.

I did not feel any physical pain, but a numbing sense of shock. His words were well meant, but not reassuring as I found myself going into battle with cancer.

After the diagnosis, I had a million questions, ranging from – can I be cured, how are you going to treat me and – the most pertinent question of all – how long have I got? Like millions of others, I suffered an agony of uncertainty and anxiety.

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