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Zarah Harrison Photo: Yellow Bird Photography

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

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MR AL BAKER November 4, 2018

Its great to see theirs people like Zarah who help in medical way to furthering the understanding of Cancer It would be nice if more would help. I’m a Cancer sufferer/ serviver to, I presented in November 2007 by time I was diagnosed I’d become an advanced aggressive type stage 4 Spinal Seminoma with secondary bone cancer started as testicular cancer Matastersised through my lymphatic system. Oncologist said “We need to do now!” “Or they’ll be little to no point in continuing!” Presented as a back issue my GP felt I’d pulled muscle slipped disc, wouldn’t send me for at least an xray which would of court much earlier with a not so grave prognosis. But all said and done once the local A & E Consultant put me through the MRI, 3 days later I started Chemo at such a high dosages that’s been refind by Cancer Research teams through the decades, downfall for me I’m allergic to Sisplatin, so my Oncologist made me a new cocktail to work almost as well as sisplatin but without me having anopholaxic shock, without Cancer Research I definitely wouldn’t be here now my timeframe was at the very best without treatment just weeks, with chemo could be 18 months maybe more no promises. Almost 11 yrs later I still here, because of Cancer Research. So my thankyou to all the teams involved in my Oncology and on going care due to some complications and side effects of chemo. I’ve donated my body to the medical sciences of the nearest medical training uni that’s licenced for dealing with human tissues full body donation. To the research traing purposes, to train med students, surgeons medical sciences and associated departments. On average around 700 people in the UK will donate their body to medical sciences. Please help improve this by helping the end result is better kinder treatment, earlier diagnosis higher success rates higher number of Cancers will become more treatable or even a cure for types of, wouldn’t that be something special how proud would your family be of you by donating to medical sciences Human tissues to assist in the training, treatment and research of Cancer! What better legacy is their than to be remembered as part of the few donor’s aiding medical sciences curing the many varied Cancers!

Mike Thursby November 3, 2018

I was diagnosed with metastatic prostrate cancer in May 2015 and am being treated with hormone therapy. I refused Chemotherapy and the hormone injections are ongoing. I would be pleased to know how I can contribute to research, now and/or when I pass.