Feature

From private shame to public campaign

The medical profession and the pharmaceutical industry have between them created a ‘breast cancer industry’ which neglects the needs of women themselves, argue Laura Potts and Mary Twomey

Two recently published books, Patient No More: The Politics Of Breast Cancer by Sharon Batt (Scarlet Press) and Preventing Breast Cancer: The Politics of an Epidemic by Cathy Read (Pandora), highlight the political contexts in which women experience breast cancer - the social, economic and environmental issues too often ignored within the dominating medical paradigm which emphasises detection and treatment.

Both books challenge the way the burden of the threat of breast cancer rests on women, as ‘powerless victims’: the unremitting rise in its incidence in the UK (currently 25,000 new cases and 15,000 deaths each year), and the failure of treatments to improve survival rates significantly over the last 100 years. But their analyses lay open questions of responsibility for that threat, exposing the vested interests of the breast cancer industry. The status and careers of surgeons (male) have been fortified by the introduction of new procedures; the development of chemotherapy follows the tides of innovation in defence technology; multinational companies like Kodak and General Electric make fat profits from their investment in mammography, and the pharmaceutical companies stand to gain from the widespread use of hormonal prophylactic drugs for women at ‘high risk’ of developing the disease.

As Batt says, ‘If each woman with breast cancer understood medicine’s limited ability to control the disease, our reliance on physicians, tests and medical interventions would be enormously reduced. The power of these institutions would dwindle accordingly.’ It is this critical and reflective approach which sets these books apart from other breast cancer literature, such as books which explain the disease and its treatment, or which are personal accounts of women with cancer.

Although Read’s motivation to write her book is not made explicit, Batt’s is quite clear. She starts from the personal — her breast cancer story — broadening the focus of her concern to make sense of her own experience through the ever-expanding network of contacts she establishes with other women with the disease, and the research and reading she relates. Her own move from the private to the public domain is reflected in the growing politicisation of breast cancer in North America, which she describes.

She recounts the pressures on women to hide their experience of the disease, the scarring it leaves physically and emotionally, and the normalisation and invisibility which are expected of them. Batt meets an oncologist who tells how she kept her breast cancer secret from her colleagues, in order to be able to continue to be regarded as herself; a Reach to Recovery volunteer (a US charitable programme offering women newly diagnosed with the disease home visits from women who have been through the same experience) tells how the organisation advised her she must give up visiting women if she would not wear a prosthesis and ‘look normal’. And she retells Audré Lorde’s passionate account of her refusal to wear a prosthesis for the comfort of others, and her conviction that what is important ‘must be spoken, made verbal and shared’.

In Britain, Jo Spence’s photographs and writings have broken the silence and helped to make women with breast cancer more visible, but to date there has been little organised, collective and public challenge to established norms and received ‘wisdom’. In April this year the Women’s Environmental Network co-ordinated the launch of a national petition calling for ‘the establishment of a national action plan to combat (sic) breast cancer in Britain... and the formation of a National Breast Cancer Coalition’.

The medical profession’s failure to control the disease technologically, and the inadequacy of individuals’ ‘lifestyle’ responses which imply women might control cancer by living more ‘naturally’ — having a late menarche, children by their early twenties who are breastfed for years, and so on — suggest the need for a public health-oriented approach to breast cancer, as to other major health problems.

Both authors identify possible environmental causes of breast cancer, and this research is a valuable and welcome resource. In the mid-1970s Israel had rates of breast cancer in young women that were twice as high as those of other countries with comparable levels of dairy and animal fat intake (which are associated with the disease’s incidence). The mortality rate fell by 34 per cent in premenopausal women between 1976 and 1986, and both Batt and Read cite research linking this with the banning in 1978 of the use of lindane, DDT, and benzene hexachloride; Read notes that before 1978 concentrations of these pesticides in the breast milk of Israeli women were up to 800 times those of American women. The decline in mortality is more rapid than might be expected, but the association has not been convincingly dismissed, and certainly has implications for other research and campaigns.

Neither author mentions the continued use of lindane in the UK, which is understandable from the Canadian Batt, but disappointing from Read who perhaps emphasises the US experience at the expense of British issues.

British women have the highest incidence of breast cancer in the world; women living in South Lincolnshire have rates considerably higher than the national average. A recent Dispatches programme on Channel 4 considered the use of lindane on the local sugar beet crop, and stated that residues can be found in cattle feed containing beet. The breakdown of lindane results in a carcinogen which binds to fat in milk. Since most milk is bought from supermarkets and national dairies, there is no way to trace its origin.

Individual or collective control of exposure to potential carcinogens is limited, and while we may, through concerted struggle, be able to influence what is done to our land and our food in the future, we cannot change the effects of damaging practices of the past. This is illustrated by evidence of the very high incidence of breast cancer on Long Island in the US, and its likely association with the intensive use of pesticides there which has led to heavily contaminated ground water. Although the use of DDT is now banned, it still appears in the drinking water supply and of course, is stored for long periods in the body.

Research into the primary prevention of breast cancer, through attention to its possible causes, is neglected at the expense of screening and prophylaxis. Both mammography and the trial use of the hormonal drug tamoxifen on ‘high risk’ women are recent developments. Interestingly, both shift breast cancer from the privacy of individual experience into a more public dimension, involving large numbers of healthy women in mass programmes, and both have, in the main, been welcomed uncritically. Batt and Read offer strong critiques of these initiatives, contributing to a much needed public debate as to whose interests they serve, and emphasising that neither confronts the causes of breast cancer.

There is still controversy regarding mammography: the identification and over-treatment of abnormalities which may not develop into breast cancer; uncertainties about the effects of even small doses of radiation and the compression of breast tissue; the optimal interval between mammograms and their financial costs; and the limited reduction in mortality which even the best projections indicate (30 per cent in women aged 50-64). Is this really the most appropriate way to address a public health problem? The trial of tamoxifen prophylactically for ‘high risk’ women similarly reinforces professional control of women’s health, as Batt states, keeping them ‘hooked into the medical system’.

The potential benefits for the population are very small, and the potential dangers of playing hormonal games with women’s bodies, in the context of evidence of the drug’s association with endometrial cancer and of the continuing debate about other hormonal influences in breast cancer, are so considerable that, at the least, we should be cautious.

Participants in these experiments are expected to comply unquestioningly with the programmes’ protocols; both authors describe active campaign groups in North America which have succeeded in getting women involved in research trial committees and as significant participants in symposia. Such authentication of women’s knowledge and roles has long been promoted by the women’s health movement, but it remains hard going to gain lay representation on ethical committees and clinical audit groups in Britain, even through the auspices of community health councils.

These two books do much to inspire new vigour in thinking about breast cancer and in challenging what Batt calls the ‘scientific philosophy geared to domination, control and financial profit’.