More women than ever are surviving breast cancer, and that’s often credited to the national breast screening programme. The programme, which offers checks every three years to all women aged from 50 to 70, is thought to prevent 1,300 deaths a year from the disease. Yet women are questioning whether genuine cases are being uncovered at too high a cost to the many more wrongly told they have life-threatening tumours.
Over the past few years, a number of studies have identified the potential harms of breast screening. These findings were echoed by research early last year from the NHS Sloane Project, a body set up to monitor cases of a slow-growing type of cancer, ductal carcinoma in situ (DCIS), which is contained in the milk ducts and is routinely picked up by screening.
The researchers found that hundreds of women a year who have DCIS are subjected to unnecessary and mutilating surgery including mastectomy, even when they are at greater risk from the complications of surgery than cancer.
Experts such as Michael Baum, emeritus professor of surgery at University College London, who helped set up the screening programme, are questioning the evidence that more lives are saved through screening than when cancer is detected by other means, such as the appearance of lumps. They also highlight risks – exposure to harmful radiotherapy and toxic chemotherapy drugs, not to mention the psychological impact of being wrongly given a potential death sentence. Professor Baum says the benefits of universal screening are exaggerated. ‘I lost faith within a few years of it starting in 1990 because, as a breast surgeon, I was dealing with the heartbreak of large numbers of patients wrongly told they were dying from the disease,’ he says.
Now women are beginning to rebel against the screening programme. Among them is Sue Warman, 69, who was found to have DCIS in November 2012. Sue says her peace of mind has been shattered as a result of her experience of breast screening. Instead of a contented retirement after years as vice-principal of a further education college, she faces an endless round of monitoring, with a legacy of scars from the removal of tissue samples.
Sue, a happily married mother of two, grandmother of five and a biochemist by training, had gone for routine breast screening at an NHS clinic in Hertfordshire. ‘I’d been a number of times before and, ironically at 67, it was probably almost the last one I’d have had anyway,’ she says. ‘I wasn’t even worried when I got a letter saying I needed to come back. Though the letter said my husband or a friend should come with me, I didn’t bother. As far as I was concerned, I was healthy.’
But where the screening system was concerned, however, Sue was anything but healthy. She was subjected to four hours of tests, including more than a dozen biopsies, where under local anaesthetic a needle is guided deep into the breast to remove cells for testing. She was left bleeding profusely and trembling with stress. ‘There was certainly no informed consent to what was done to me,’ she says. ‘I didn’t sign anything and all my questions about what they were looking for were ignored or met with patronising answers.
‘Eventually I was told by a nurse that they were looking for microcalcifications. I discovered these are areas of calcium deposits found in lots of women, but if they’re clustered together they may be associated with cancer.’
DCIS affects 4,800 women a year and is becoming more common because it is readily diagnosed by breast screening. It is sometimes referred to as ‘pre-cancer’ because in a minority of cases it can develop into invasive disease. But doctors do not know which DCIS cases will be dangerous and which will not.
When Sue and her retired engineer husband Geoff, 67, who live near Bristol, went to get the results of the tests, they were told she had an area of microcalcification 8.5cm (3.3in) long from the nipple to the chest wall. She refused a mastectomy. ‘There was no lump in my breast or pain. I did see an NHS surgeon who was the first sensible person I spoke to,’ explains Sue. ‘She admitted no one could predict if this microcalcification would become invasive. I would be losing a year of my life, undergoing the risk of surgery and the harm from chemotherapy and radiotherapy, for no good reason.’
Instead she is being monitored to see if the growths get bigger. So far they haven’t.
Sue has looked at the research on screening and feels confident she made the right decision. ‘I know that at least four times as many otherwise healthy women are being needlessly subjected to mastectomy, radiotherapy and toxic drugs, for every genuine diagnosis attributed to screening. ‘I also know the screening centres have annual NHS quality assurance targets for the number of cancers they have to diagnose, which I find utterly shocking.’
Of the two million women screened in Britain every year, around 80,000 are recalled for further treatment. A small proportion of these will go on to have invasive cancer, which develops into an expanding tumour. The statistics are complicated, but Cancer Research UK says if 1,000 women who did not have breast screening were monitored for 20 years, 21 would die from breast cancer, compared with 16 breast cancer deaths in a group who underwent screening. It’s estimated 30 per cent of women never go for screening.
Risk of breast cancer rises with age, but Sue argues the statistics show that even if an unscreened 75-year-old discovers a cancerous lump, she still has a life expectancy of ten years, so will die at about 85 – the same age as those who have screening and treatment. ‘I am not opposed to all screening, but it should not be a blanket programme,’ she says. ‘It should be offered to people who want it on the basis of informed choice.’
Though a number of senior female doctors admit privately they do not have screening, Iona Heath, 64, a former president of the Royal College of General Practitioners, is one of only a few to go public. ‘I have seen enough women die from breast cancer to know what a terrible disease it can be and to understand the motivation to promote early diagnosis and curative treatment. And yet I have cheerfully declined NHS invitations to attend my own screening mammography,’ she says.
‘My worry is that I have made this decision on the basis of information that is not readily available to my patients. Evidence shows the percentage of unscreened women still alive ten years later is 90.2 per cent. If they are screened, it is 90.25 per cent. Is this enough difference to risk the possibility of significant harm? For me, it is not.’
Last year, a parliamentary science and technology committee investigation heard evidence from a number of women damaged by breast screening. Among them was Miriam Pryke, 60, a former teacher and mother of two, from Marlow, Bucks, who felt ‘railroaded’ into unnecessary breast removal following DCIS.
Two years ago, the breast screening information leaflets were revised to make it clear screening was not compulsory but a choice. It states: ‘Overall, for every woman who has her life saved, about three women are diagnosed with a cancer that would never have become life-threatening.’
In October, the parliamentary committee acknowledged lessons had been learned in giving women information to help them make an informed decision. But it also suggested the accuracy of the statistics used should be reviewed. ‘It is vital that uncertainties are acknowledged . . . and expressed in a clear, accessible way,’ it says. Public Health England, which administers the breast screening programme, told the Mail: ‘The view is that we do need to have a national screening programme. There is always an issue of overtreatment; it’s a debate that will run and run.’