'More positive about mammography' – reactions of women to a false positive recall: a qualitative study of women at risk of familial breast cancer

Annual mammographic screening from the age of 40 is recommended for women in the UK whose family history places them at a lifetime risk of developing breast cancer of ≥ 1:6 [1]. While the clinical benefits of screening younger women at increased risk are not established, emerging evidence suggests screening may lead to increased survival [2]. However, little is understood of the emotional impact of screening on women with a family history. This is particularly important in view of the increased likelihood of recall for further tests in women under 50 years old compared with those over 50 years old [3]. A recent questionnaire study of the psychological impact of mammographic screening on women under 50 years old with a family history of breast cancer showed that, contrary to expectations, women who were recalled for further tests prior to an all-clear result reported significantly more positive feelings post result about screening than women not recalled [4]. This complementary qualitative study explored the value women placed on having joined a programme of regular screening, and sought to understand the reactions of women who had received an initial all-clear result and who had received an all-clear result following further tests.

In-depth interviews were performed with 58 women, aged 35 to 50, undergoing mammographic surveillance due to their family history of breast cancer, and who had taken part in the questionnaire survey. Women with initial all-clear results (36 women) and women with all-clear results after further testing (22 women) were recruited. Interview topic areas included experiences of breast cancer within the family, motivations for joining the programme, likelihood of developing breast cancer, views of mammography, emotional responses to the screening process and results, and views about the overall value of participating in the programme. All interviews were transcribed verbatim and analysed thematically.

Participating in the programme reflected a strong desire within the women to be proactive about their risk of breast cancer, particularly if delay in diagnosis was a factor in their relatives' disease. Regardless of their individual experiences of cancer within the family, faith in the ability of mammography to detect a cancer at an early stage gave reassurance that a cancer diagnosis could lead to a positive outcome. Many women placed a much greater faith in mammography than in their own ability to detect an abnormality, particularly at the very early stages of a symptom developing. A high degree of reassurance and relief was described by women receiving an initial all-clear result, although for a small number this relief was slightly tempered by doubts about the accuracy of their result. Of the women recalled for further tests, most experienced immediate distress; for some, this remained throughout the process of further testing. The subsequent all-clear result was often followed by an increased feeling of security and reassurance, and the women appeared to place an even greater faith in screening than those receiving an initial clear result. Far from being a negative component of screening, recall was interpreted as proof that mammography worked. Recall for a nonmalignant symptom, or for an unclear mammogram, enhanced belief in the detection of any future malignancy. Women's concerns about being at risk of developing breast cancer appear to be alleviated by participating in an annual surveillance programme. Irrespective of their screening result, their stories demonstrated the significance of mammography in enabling them to establish a sense of being in control of their family history.

These findings highlight the emotional benefits to many women of participating in a family history screening programme. Counselling women prior to joining could include detailed discussions of the effectiveness of mammography, which may need to be reiterated with screening results. The importance of remaining breast aware between screens should be reinforced. These findings are important in the context of the introduction of a national screening programme for women under 50 years old with a family history of breast cancer, and the increased likelihood of recall in this group compared with women over the age of 50.

Research funding from Cancer Research UK. *PIMMS Study Management Group Stephen Duffy, Wolfson College of Preventive Medicine, London; Gareth Evans, Department of Clinical Genetics, St Mary's Hospital, Manchester; Hilary Fielder, Screening Services, Velindre NHS Trust, Wales; Jonathon Gray, Institute of Medical Genetics, University Hospital Wales; James Mackay, Institute of Child Health, London; and Douglas Macmillan, Professorial Unit of Surgery, University of Nottingham.

Affiliations

1. Cancer Research UK Primary Care Education Research Group, University of Oxford, UK

   • A Clements
   • , S Tyndel
   •  & J Austoker

2. Institute of Medical & Social Care Research, Bangor, UK

   • B Henderson

3. Institute of Medical Genetics, University of Wales College of Medicine, UK

   • K Brain

4. Oxford Brookes University, Oxford, UK

   • E Watson

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