Why our living with and beyond cancer research initiative matters – Ceinwen Giles’s story

Over the last year, I’ve been delighted to be involved with the NCRI’s Living with and Beyond Cancer Research Initiative to identify the priorities for researchers and research funders. As I wrote in an earlier blog, I was diagnosed with Stage 4 diffuse large b-cell lymphoma eight years ago. My life was saved by research; I spent a tough six months in hospital enrolled in a phase two clinical trial of a relatively new high-dose chemotherapy regimen. While treatment put me into remission, no one warned me that life would be different once I was released from hospital. I spent most of my time in the hospital hoping that I’d one day “get back to normal”.  What I’ve learned personally – as well as through my work at Shine Cancer Support – is that “getting back to normal” is often impossible.

Living with and beyond cancer has a nice ring to it but it hides a multitude of difficult issues, many of which are never talked about – in large part because they aren’t considered priorities. Your life may be saved by cancer treatment, or you may be able to live a long time with cancer, but too often this also means living with other significant health problems, both mental and physical, as well as the loss of everything from your career to your family and friends.

The Priority Setting Partnerships of the James Lind Alliance were set up to ensure that patients have a say in setting the research agenda and, in developing this Top 10 list, the voices of patients were key. The Steering Committee was comprised of patient-facing professionals and funders but also many patients representing different cancer types and stages, as well as the different groups affected (Shine, for example, represented those patients in their 20s, 30s and 40s). If future research is to be of use to patients, it’s vitally important that patients can say what would be of use to them.

Identifying a Top 10 list of research priorities was, however, never going to be easy. This was brought home to all of us on the Steering Committee early on when the initial survey identified thousands of questions that people want answers to. Categorising and prioritising these was a mammoth task that took months, as well as lengthy and often complex discussions. Did everyone who had questions about “late effects” understand what late effects actually are? Or did they mean “long-term side effects” instead? Do we currently know enough about the impact of diet on cancer and the extent to which it influences the chances of cancer recurring? And how do you decide what is considered “enough”?

Reading through our top ten list I’m struck by the breadth of it; I’m sure there aren’t easy answers to many of these questions but I’m glad they are finally being asked. As a cancer patient myself, I’d love to know more about what causes fatigue and the best way to manage it; it’s something that I’ve struggled with for years and there is nothing more frustrating (or boring) than waking up tired. I would particularly like greater evidence about fatigue management for younger cancer patients who very often struggle with fatigue while still needing to work full-time and manage busy social lives. I also look forward to learning more about how we can improve long-term cancer care; life post-treatment is often full of anxiety for people who are unsure how to manage a fear of recurrence with the side-effects of treatment, as well as those issues which may occur many years later.

I hope that our top 10 list helps to shape the research agenda for years to come and, with one in two people predicted to develop cancer in their lifetime, it seems more urgent than ever to have patient-led priorities articulated and shared. More than anything though, I hope that our list highlights to researchers and research funders that it’s not only whether you live or die from cancer that’s important; how you live with cancer can matter just as much.