Some of the most critical comments have come from breast cancer consumer advocates – overtones, perhaps, of how prostate cancer consumer groups have sometimes reacted to evidence about the potential harms of prostate cancer screening.
Now Hazel Thornton, an independent advocate for quality in research and health care in the UK, and an Honorary Visiting Fellow, Department of Health Sciences, University of Leicester, gives us another perspective. Thornton describes herself as having being “given the breast cancer label” as the result of undergoing mammographic screening in 1991.
“It is unsurprising that women find it hard to accept the facts from papers such as that by Stephen Morell and colleagues from the University of Sydney, and from robust systematic reviews of screening by mammography, or of breast self-examination.
Twenty years of being told what to do in paternalistic promotional literature extolling the benefits of ‘finding it early’, and being frightened by being told that ‘it could save your life’, are difficult to reverse.
As we see, many women’s support and information groups are still encouraging women to disbelieve good evidence of over-diagnosis and over-treatment. They assert that it is acceptable to accept unnecessary lumpectomies, mastectomies, radiotherapy, chemotherapy and hormonal treatments “just in case”.
Promotion and arguing that this utilitarian ethic is acceptable by those in authority is unethical and harmful: it denies those women who trust them proper respect and the right to be properly helped to make up their own minds by neutral presentation of balanced facts. For more information, see the English version leaflet that can be downloaded here.
For too long ‘The Facts’ that women have been provided, e.g. by the UK NHS Breast Screening Programme, have been short on fact, short on evidence-based data, but full of persuasion, estimates, promise of benefit – but silent about harms.
Until this year, that is, when they at last capitulated to exposure by a letter in The Times 19th February 2009 signed by 23 international experts, stating that their invitation leaflet was short on the truth and totally inadequate for the purpose of enabling women to make an informed decision about whether to attend.
Many women were and still are unaware that they have any choice in the matter – and, as Iona Heath entitled her paper in the BMJ: “It`s not wrong to say no!” (abstract is here)
Strenuous objection had repeatedly been made to informing invited women about pre-invasive cancers such as DCIS.
Yet, in the UK, on Sunday 1st November 2009 it was reported in The Sunday Times that “The Government has been forced to rewrite its advice on breast cancer screening after research showed that thousands of women have been misled into having unnecessary surgery.”
Joan Austoker (who is leading the revision of the invitation leaflet) “had admitted it had been a mistake to withhold information about unnecessary treatment for DCIS”. It was also reported that they “want to make sure that all the risks of breast screening are referred to in appropriate detail.”
Only this week, 17th November 2009, the US Preventive Task Force has published guidelines with the following recommendations: “The USPSTF recommends against routine screening mammography in women aged 40 to 49 years. The decision to start regular, biennial screening mammography before the age of 50 years should be an individual one and take into account patient context, including the patient’s values regarding specific benefits and harms. (Grade C recommendation)” .
Quite a turnaround!
This month in the UK, Sense about Science, addressing poor public understanding about what screening can and cannot do, launched a booklet: “Making Sense of Screening”.
Little by little, reason is beginning to prevail over blind belief!”