A matter of life or death

As a cancer survivor, Sally Feldman has been a research object and participant

November 17, 2011

Not long ago, I discovered a new and distressing way to turn theory into practice. Like everyone else in my position, I’d been heavily involved in the inexorable build-up to the research excellence framework: conducting audits, encouraging bids, urging publication, monitoring partnerships and measuring outputs with increasingly relentless zeal. And I’d become so used to dealing in words such as “impact” and “collaborative” and “internationally recognised” and “evidence” that they’d started to lose much of their original meaning. Rather like a penitential Hail Mary, the language had degenerated into ritual.

But all that was to change when, just over a year ago, I was diagnosed with breast cancer. With brutal suddenness, I found that I had become an object of research myself. And that research mattered. Instead of being an abstract metric, it had become a matter of life or death. My life or death.

As I was tested and retested, all my casually thrown-around research terminology began to make new sense. At the breast care centre at Barts, every piece of advice, every part of the diagnosis and every suggested treatment was informed by the most recently published and peer-reviewed research. As for collaboration - there it was in full swing.

My diagnosis was made by a team of different specialists: a breast surgeon, a breast care nurse, a radiologist, an oncologist and a cytologist. It was, I was assured, the most effective way to avoid misdiagnosis or unnecessary treatment.

So no wonder I choked over my morning coffee last month when Radio 4’s Today programme announced that there was going to be a review of the UK breast cancer screening programme conducted by Sir Mike Richards, the national cancer director in the Department of Health. He had been prompted to launch it in response to suggestions from some scientists that the procedure might be doing more harm than good. While the NHS claims that screening saves 1,400 lives each year, fears had been raised that not enough attention was being paid to the risks of the process and the distress caused by overdiagnosis and by unnecessary mutilating surgery.

As I listened, I realised that I was no longer simply a research subject. I was now an active and rather angry participant. It was all very well, I told my radio noisily, to present new research showing the dangers that can arise from the misinterpretation of symptoms, but this couldn’t refute evidence showing the benefits.

And another thing, I muttered to myself as I made yet another attempt to get the frizz out of my newly returned hair. Shouldn’t the subjects themselves have rather more say in the matter? After all, it was their lives that were on the line.

A week later, Marianna, my breast nurse from Barts, rang to ask me to take part in the launch of a new venture that would be concentrated entirely on the experiences of breast cancer patients.

I learned that like other units across the country, Barts has joined with the charity Breakthrough Breast Cancer to develop a Service Pledge to its patients. This sets out a clear, reassuring guide to what every patient can expect from each stage of treatment. Marianna wanted to know if I would be prepared to attend the launch to describe my own experiences of being a “survivor”. I jumped at the chance. Now I wasn’t even just a subject of research. I was a contributor to it.

I’m not sure how many of my useful tips are going to be included next time, but one of my research colleagues assured me that they amount to a fine example of ethnographic methodology. If you don’t want to look like a cancer victim, I advised, invest in a good eyebrow pencil. When visiting Disneyland, make sure you don’t wear your wig on Big Thunder Mountain. Zumba class is great therapy after surgery, but if you’ve had a reconstruction, don’t attempt to shimmy. You could put somebody’s eye out.

But that’s not the only research I’ve been involved in. In the space of a year, I’ve taken part in three separate trials examining different aspects of breast cancer. Evidence-based? Naturally, since thousands of women like me are the evidence. International? Certainly. One of the programmes, for example, is establishing a huge tissue bank that will enable detailed analysis of different factors, and will be available internationally.

As for collaboration - for all major cancer research projects, interdisciplinary work is essential.

At the University of Westminster, a project funded by the charity Against Breast Cancer is looking not at the cause of the disease but at its likely recurrence. And, once again, collaboration is key. “One of our strengths”, explained the project’s leader, Miriam Dwek, “is having excellent access to protein biochemistry, cell biology, immunology, nutrition and epidemiology all within our School of Life Sciences.”

Using the experiences of more than 3,300 breast cancer patients, the research combines biochemical analysis of tumours and of patient response to various proteins with much wider research into diet and lifestyle. But what could persuade all those women, during such an incredibly anxious period in their lives, to fill in questionnaires, write daily logs, supply yet more blood and urine samples? Probably, like me, they’re so grateful to have had their lives saved that they passionately want to help conquer this cruel, invasive and horribly common disease.

And that won’t happen without projects such as this one. Its modest aims are: to prevent the recurrence of breast cancer, to develop a blood test for breast cancer recurrence and also, finally, to develop a vaccine against breast cancer.

Now that’s what I call impact.

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