Last week, sitting at my desk at work, I clicked on a newly arrived PDF with considerably more trepidation than usual. The draft expanded to fill my screen, and I nervously scrolled down past a list of authors’ names into a soup of acronyms and jargon. Is she in there? I wondered, my breath quickening.
As part of a global effort to diagnose and treat cancer more effectively, every year researchers analyse millions of patient samples in different ways. Cancer’s inner secrets, and its inherently destructive nature, are being laid out in increasing detail. New avenues open up, new vulnerabilities are exposed. Consequently, step by step, survival stats creep ever upwards.
These efforts lead to thousands of academic publications, each packed with data and punctuated with images, tables and graphs.
For more than a decade my inbox – like those of all my colleagues in the Cancer Research UK communications department – has filled up with these scholarly works. Almost every day we choose discoveries to share with the public to show the impact of our supporters’ generosity and to contextualise the unfolding progress for the wider public.
But this time it was different. Almost three years ago, out of the blue, my fiancee Zarah’s “persistent urinary tract infection” turned out to be bladder cancer – an often aggressive and surprisingly overlooked form of the disease. “It’s stage 4,” her oncologist had told us, gently. “We’ll be trying to contain the disease, not cure it.” I still remember minor details – a windowless, brightly lit ground-floor office in London’s Westmoreland Street hospital, a scrap of paper wedged under a foot of her chair, streaks of mascara running down her cheeks.
Days earlier, Zarah had undergone an operation to remove as much of the tumour as possible. But the surgeon discovered that it had grown into the wall of her bladder, and from there into her lymph nodes. Chemotherapy would buy some time, but just how much was unknowable. The average, I accidentally discovered through late-night Googling, was about nine months. But we felt we’d do much better than that: Zarah was just 37, far younger than an average patient. This gave us hope.
We drew further hope from the fact that, thanks to a call to an academic I’d come to know well, samples of her tumour would be sent off to the UCL Cancer Institute and the Francis Crick Institute, where they’d be scrutinised alongside monthly blood and urine samples for molecular weak spots that might open up experimental options down the line.
There were none. After six months of chemotherapy, and a few months more of what, in retrospect, is best described as an ever-accelerating decline, she died peacefully in my arms in a hospice near our London flat. Nine months. Probably the only average thing about her.
Now, two years later, I’m staring through blurry eyes at a paper authored by the researchers who had analysed Zarah’s samples. Their discovery is not, in media terms, a “breakthrough” – it is, however, a small, important step forward. Thanks to a series of bladder cancer patients who donated urine samples during their illness, the research team has found that the white blood cells floating in patients’ urine contain important information about how the disease might respond to treatment – information that could normally only be obtained with a full-tissue biopsy. It’s the sort of insight that will help others – perhaps profoundly – in the future. And it’s characteristic of Zarah, a Quaker with a burning sense of justice and charity, that she’s still helping others, even now, after her death.
Being able to contribute to research was vitally important to Zarah and has, in turn, helped me and her family come to terms with things, too. This is not surprising. The vast majority of patients say they want to be able to help others by sharing data or samples, and want to know about subsequent findings. Yet according to the 2017 cancer patient experience survey, only a third of patients report having had a conversation about doing so.
When thinking about research, most people imagine drug trials, which can have strict eligibility criteria. Yet, as Zarah’s story shows, there are so many more ways people can take part. There’s a constant need for tissue, urine, blood and other biological material – linked to medical records – to advance our knowledge. And yet far too few patients get the chance to contribute. In a relatively centralised healthcare system such as the NHS, this is a huge missed opportunity.
What’s standing in the way? For a start, researchers may need to think bigger – small, local sample projects are all very well, but larger, nationally coordinated, collaborative studies would be much better. Clinicians working in a cash-strapped, target-driven NHS can struggle to keep abreast of programmes their patients might take part in, and to find time to have sensitive discussions – let alone train to become future researchers. Finally, there needs to be greater public awareness of existing opportunities for patients to take part in research in this way. The UCL team tell me that to take their work further, they need to recruit many more people.
So much, rightly, is made of the need to improve waiting times, and increase staffing levels and funding. But there is a bigger prize: an NHS in which everyone is able to contribute to improving things for those who will inevitably come after them, just like Zarah did.
Henry is part of the communications department at Cancer Research UK
This article originally appeared in The Guardian
Read the research
Wong, et al. (2018). Urine-derived lymphocytes as a non-invasive measure of the bladder tumor immune microenvironment. JEM. DOI: 10.1084/jem.20181003