I’ve had breast cancer. But I know some screening can do more harm than good | Fay Schopen

Approximately one in eight women in the UK will be diagnosed with breast cancer in their lifetime, and early screening can save lives – around 1,300 a year, according to the NHS. That’s one in every 200 women screened; all women aged between 50 and 70 are invited for a mammogram every three years.

But researchers at University College London have found that women who are at lower risk of breast cancer – about a third of the population – would be better off not being screened at all. Their research shows that screening according to risk would not substantially increase the number of women who are missed, but would reduce the number of women who are put through unnecessary tests and treatment for breast cancer.

This is called overdiagnosis – which sounds benign, an admin problem, but is nothing of the sort. Given the principle that what gets measured gets managed, some women who are screened are diagnosed and treated for breast cancer that would never otherwise have caused them harm. And three out of four women who receive an abnormal result and are called back for further, more invasive tests are found not to have cancer. The horrendous psychological toll cannot be measured as easily as taking an x-ray of a breast.

The UCL researchers, led by Dr Nora Pashayan, say that if genetic testing were used, each woman could be informed of her individual risk, which could result in just the 70% at highest risk being screened. This could also help solve the problem of the abstainers, the fearful, and the not-bothered – only 72% of those invited for screening actually go.

The idea is, of course, cost saving – and more power to it. The research doesn’t hide its intentions – the paper has the words “cost-effectiveness” in its title – so happy birthday NHS, and goodbye overdiagnosis.

But what of this genetic screening, so casually mentioned? That may not be so straightforward. I like to think of myself as rational. I was well aware that I was at high risk of developing breast cancer: my mother died of the disease when she was 35. It was hard work getting on to an early screening programme when I was 30, because the evidence amounted to “only one relative”. The consultant frowned, unsure of my right to have my breasts flattened and screwed between two glass plates (no one said mammograms were fun) – despite the fact that I also have Ashkenazi Jewish heritage – another risk factor. She would have liked to see a parade of female relatives, all stricken with cancer. Unfortunately these people did not exist. But once I was in the programme, the idea of genetic screening was mooted. I put it off. Sure, it sounds rational, it’s just fact-finding, after all – but in your own body, delving into the myriad dark and hidden ways your treacherous genes can and will betray you.

The prospect will be unpalatable to many; the stakes are extremely high. If you carry the BRCA1 or BRCA2 gene mutations your risk of developing certain cancers is greatly increased. Women with the BRCA1 gene, for example, have a lifetime risk of breast cancer of 60-90%; those with BRCA2, 45-85%. You can opt for extra screening, of course. You can diligently check yourself in the shower. But there are other, more drastic measures mooted for those hurtling towards an unpleasant genetic destiny. Preventative mastectomies, ovary removals. They too sound fine, just more admin – after all, you want to live don’t you? But the reality of having both breasts removed in your 30s; or of being plunged overnight into an instant menopause before you are remotely ready for one – these are not easy or enticing prospects.

When – and it’s likely to be when, not if – genetic screening becomes the norm, how are these unpleasant facts going to be communicated and managed? Counsellors, support groups, those awful “quiet rooms” containing boxes of tissues – the NHS will need more of those. Perhaps the researchers will have to recalculate those cost savings.

I was BRCA2. I was eventually tested after being diagnosed with aggressive and fast-growing breast cancer, aged 36. So all the statistics on earth cannot account for human nature. Even more bewildering is the fact that the year I was diagnosed, I hadn’t been for my annual mammogram – in fact, it was well overdue. Why? A mix of unscientific magical thinking that it pains me to think about now, and general life chaos. It became another item on my to do list that didn’t get done.

The idea of genetic screening, rather than blanket screening, is sound. But in reality it raises many more questions than answers. We must surely accept the notion of the greater good here – efficiency in terms of NHS spending, in terms of lives saved. But we are potentially swapping a smaller psychological toll for the many for a greater psychological toll for the few – and unpicking this is going to amount to more than some accountant-friendly statistics about costs and benefits.

Fay Schopen is a freelance journalist. She tweets at @fayschopen


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