Diagnosed with breast cancer whilst on a family history screening programme: an exploratory qualitative study

Early mammographic screening (under the age of 50) is offered to many women in the UK who are at moderate or high risk of developing breast cancer because of their family history of the disease [1]. While studies are underway to establish the clinical effectiveness of early mammographic screening [2], relatively little is understood about the impact of early and regular surveillance on the psychological wellbeing of women [3], and even less about the impact of being diagnosed with breast cancer while on a screening programme. This qualitative study explores the emotional effect that the diagnosis of breast cancer had on women, and the value they placed on having joined the family history screening programme, both pre and post diagnosis.

In-depth interviews were undertaken with 12 women in the UK, aged 35 to 50, diagnosed with a screen-detected breast cancer while on a mammographic surveillance programme because of their family history of breast cancer. The interviews include explorations of women's motivations for joining the early screening programme, their views about the value of mammography, and the process of and their reactions to their cancer detection.

The interviews revealed different convictions of the likelihood of developing breast cancer, but all women gained a strong sense of reassurance from the possibility of the early detection of a cancer through undergoing regular mammography. A number of women relied solely on mammography to detect abnormalities, often reluctant to examine their breasts due to the fear of finding a symptom. Reactions to the diagnosis of a cancer ranged from relief to intense shock. While all women were very positive about having undergone mammography, not all wanted to continue with screening. For some, prophylactic mastectomy was preferable, to reduce future cancer risk, and to alleviate anxieties about the detection of another cancer at each subsequent screen. Our study shows that for this group of women, detection of their cancer was ultimately a positive experience. They perceived surveillance to have achieved its goal of detecting a cancer at a stage when treatment was likely to be effective, and the future described was often one free of the fear of cancer that they had carried with them for many years.

Not all women diagnosed with breast cancer will have a pronounced negative reaction to their diagnosis; the period during which they are under threat of developing the disease may be a time of psychological preparation, thus enabling an easier adjustment to the diagnosis. Women may seek bilateral mastectomy as their treatment of choice, although their cancer my warrant a less radical approach. Surgeons need to be aware of the fears associated with future screening. Identification of women who are averse to self-examination may allow the development of strategies to overcome this avoidance. Women who have experienced the process of diagnosis and treatment may be in an ideal position to provide a mentoring system to women on the family history screening programme who are very distressed at the possibility of being diagnosed with breast cancer. Their perceptions of being able to cope should a breast cancer be detected may be improved through such contact.

Research funding from Cancer Research UK. *Management Group Stephen Duffy, Wolfson College of Preventive Medicine, London; 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. Department of Clinical Genetics, St Mary's Hospital, Manchester, UK

   • G Evans

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

   • K Brain

5. Oxford Brookes University, Oxford, UK

   • E Watson

Consortia

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