Deciding on breast cancer risk reduction: The role of counseling in individual decision-making – A qualitative study

•Risk counseling in breast cancer is an on-going process.•Decision-making is continuous in breast cancer risk treatment.•Personal experiences determine one’s decision-making.•One’s risk evaluated along similarities and differences to other’s with disease. The presentation of risks and benefits in clinical practice is common particularly in situations in which treatment recommendations involve trade-offs. The treatment of breast cancer risk with selective estrogen receptor modulators (SERMs) is such a decision. We investigated the influence of health care provider (HCP) counseling on women’s decision-making. Thirty breast cancer risk counseling sessions were recorded from April 2012–August 2013 at a comprehensive cancer center and at a safety-net, community hospital in the US. Participating women and HCPs were interviewed. A cross-case synthesis was used for analysis. Of 30 participants 21 received a SERM-recommendation, 11 decided to take SERMs. Counseling impacted decision-making, but did not determine it. Three categories emerged: 1.) ability to change the decision anytime, 2.) perceptions on medications, and 3.) proximity of cancer. Decision-making under conditions of a risk diagnosis such as increased breast cancer risk is a continuous process in which risk information is transformed into practical and experiential considerations. Individuals’ health care decision-making is only marginally dependent on the interactions in the clinic. Accepting patients’ experiences and beliefs in their own right and letting them guide the discussion may be important for a satisfying decision-making process.