Objectives: The purpose of this work was to explore the views, expectations and experiences of the increasing number of women with a family history of breast cancer who present to their GP and are referred to secondary care. Methods: A prospective descriptive study was carried out with 193 women referred by their GP regarding a family history of breast cancer to a genetics clinic or breast clinic in Oxfordshire and Northamptonshire over a one-year period. Results: Women who presented to primary care about a family history of breast cancer wanted their GP to provide them with information (90%) and to discuss their risks of developing breast cancer (87%). Women often had unrealistic expectations of what they might expect from a referral to secondary care, especially with regards to being offered genetic testing. Within 1 month of attending the secondary care appointment, 11% of women had returned to see their GP regarding their family history and what had happened at the specialist clinic. Conclusions: Women want information and the opportunity to discuss their breast cancer family history concerns in a primary care setting. For women who are referred, information provision in primary care is important to ensure realistic expectations of the secondary care visit and to provide ongoing reassurance and support throughout the often lengthy referral process. For women who are not referred, information provision in primary care is even more important, as this may be their only source of information and advice.
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