Nigel Charles is a health services researcher at the University of Exeter Medical School. He also has Non-Hodgkin Lymphoma and draws on his experience of this to suggest a patient informed research study about using statistics to help patients deal with the emotional impact of cancer. (1,418 words)

I’m in a club no one wants to be in. The Cancer Club. This post is about a hunch I have about how to handle being a member of this club and the need for this to be researched. I’m also waving the flag for patients shaping the research agenda.

I was diagnosed with an aggressive variety of Non-Hodgkin Lymphoma—a type of blood cancer—in October 2016. (Indeed, I write this on the day of the anniversary of my first hospital admission which led to the diagnosis. Happy Birthday.) The haematologists who specialise in the treatment of NHL found a cricket ball sized tumour buried deep inside my abdomen. Surgery was needed to stop it blocking my bowel but subsequent chemotherapy hasn’t worked. We have yet to see if the next and last available option—radiotherapy—will.

I’ve called my tumour ‘Donald’ in honour of its more famous namesake on the other side of the Atlantic. Why? Donald is damaging; he has been resistant to all normal and reasonable means of control; and he may yet go on to cause even more grief. We know he’s there but we wish he wasn’t. But can Donald teach us anything useful? I think so and I say this by drawing on my experience of having Donald in my life. This experience is that knowing the statistical chances of Donald being eradicated by medical treatment has probably helped me cope emotionally while he’s been around. If other cancer patients have a similar experience, my hunch is that knowing the chances of treatment working helps patients deal with the psychological management of the uncertainty of cancer; not knowing these chances has the opposite effect. Let me tell you more about how my cancer treatment journey has led me to this hunch and why I think it needs to be researched.

The gist of my journey is that I have had three types of chemo over about eight months that ultimately haven’t cured my cancer and I’m about to start radiotherapy, the last available mainstream treatment. Before I was offered radiotherapy, I had been told that the most recent chemo that I had been given was the last available mainstream option. If that didn’t work ‘we’d be in trouble’, to quote one of my consultants. Since diagnosis I have known that chemo might not work, that the cancer could kill me. But I have surprised my friends and myself by being relaxed, sanguine and stoic throughout all but the most recent miles of my treatment journey. This equanimity felt effortless, it seemed to come naturally and, crucially for my hunch, I maintained it even when I believed that the most recent chemo was the last chance.

When I was recently told that my last chemo hadn’t worked, another mainstream option—radiotherapy—was pulled out of the hat. While there seems to be good reason for maintaining hope, my equanimity disappeared, to be replaced by deeply unpleasant anxiety about radiotherapy not working and the prospect of dying. This change of mood didn’t make much sense to me. Why should I feel OK when I thought that the last chemo I had was the last option left but then feel rubbish when later I was told that radiotherapy was actually the last option left? I went in search for an explanation and found a hunch. It’s a hunch that I think can be tested. Before I tell you about my hunch, I need to say something about my experience of being given estimates of whether treatment works.

Since diagnosis I have pestered my doctors for estimates of the effectiveness of chemotherapy. As a health services researcher, I knew very well that predicting my own chances of recovery wasn’t possible. Science hasn’t yet led us to the Holy Grail of knowing in advance whether any individual patient will respond to treatment. But I know about trial and other data—I wanted to know what this data could tell the doctors and what they could tell me. My doctors have consistently told me not to trust the estimates too much as they are based on old studies. But this hasn’t really mattered to me as I just needed to hear numbers from those who were credible, rather than necessarily know whether the numbers themselves were credible (although I have taken a sneaky look at a Cochrane review). I think this is somehow tied up with the trust and faith we place in the doctors about getting the diagnosis and treatment options right. I wanted the same faith and trust in the doctors about the stats.

So what were the numbers?

Very early on I was told that 80% of NHL patients given the first type of chemo I received (R-CHOP) have their cancer cured. And as my cancer was one third its original size about two months after chemo started, I was bound to be in the 80%, wasn’t I? Well no actually. Another two or so months later the tumour had started to grow which meant R-CHOP wasn’t working and it was abandoned. The next option was a stem cell transplant and BEAM chemo. But to qualify for this I was to be given RDGP chemo—aka salvage chemo, my tumour had to quickly reduce in size and the chances of this were 20%. So there was fat chance of that happening, eh? Wrong again. Salvage chemo made the tumour smaller which meant I became an inpatient for four weeks for BEAM chemo, the transplant and recovery. I was told that the chances of success for those with NHL were 50:50. I ended up falling into the wrong 50%. I’ve been told that radiotherapy really is the last chance. If this doesn’t work, I’ve more or less been told that the next stage is palliative care. But then I’ve really known this from before I got the results of the last chemo.

You’ll remember my equanimity was maintained even when I believed that my last chemo was my last chance but disappeared when I was given another last chance with radiotherapy. A key difference between chemo and radiotherapy is that there were quantifiable estimates for the success of chemo but in my type of case the success rate for radiotherapy is not known. My hunch about the shift in my mood is this:

A potentially distressing aspect of me having cancer is the uncertainty of whether treatment will stop cancer killing me. Knowing the success rate for treatment gave me the hope of living because I could quantify my hope. Quantification put a restraint on uncertainty. But without an estimate, I had nothing tangible on which to hang my hope; uncertainty was unchained. Hope and equanimity got beaten up by unrestrained uncertainty. So Mr Anxiety paid an unwelcome visit.

There might be other explanations for the change in mood: Perhaps failed chemo and the side effects of treatment had become too much. Or maybe it’s because we’re going into the dark days of winter soon. Or it’s possible that the prospect of Boris Johnson becoming Prime Minister became too depressing. Who knows? But I think my hunch merits further thought.

So this brings me back to my question about what Donald can teach us. At the moment my hunch is based on a personal experience and so is highly subjective and might be rare. On the other hand, many cancer patients might share my interest in success rates to the extent that they might benefit emotionally from knowing about them. But only research can test this. So my hunch needs to be turned into a theory and we want to test the theory by the design and conduct of good quality research. So here’s my theory:

Providing cancer patients with credible estimates of the chances of their treatment being effective helps them to emotionally cope with a cancer diagnosis and cancer treatment. Without these estimates, their emotional management of their diagnosis and treatment is undermined.

It may well be that others have already carried out studies that explore such a theory or ones similar. If the evidence supports the theory, doctors, nurses and those providing pastoral support such as Macmillan need to know about the findings to help these professionals use them in their work with patients. If the research has not been carried out, Iet’s hope we can find researchers to do it (and find those to fund it) who are receptive to research ideas generated by patients.

So is Donald useful? You decide.

—Nigel Charles, October 2017