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Women with a BRCA1 or BRCA2 mutation have a 40-74% breast cancer risk and 11-46% ovarian cancer risk by age 70. Due to this elevated risk, it is recommended that mutation carriers have increased breast screening and a risk-reducing salpingo-oophorectomy. They are also given the option to have a risk-reducing mastectomy. The process of deciding if and when to undergo prophylactic surgery has been found to be a complex and difficult process for many carriers. To evaluate the decision-making process, recorded interviews were conducted with 20 BRCA1 and BRCA2 mutation carriers. Information about the cancer risk management decision-making process was analyzed using grounded theory. Factors involved in decision-making, ease of decision-making, and individuals involved in the decision-making process emerged as major themes. Mutation carriers who have not had breast cancer (previvors) were found to have a more difficult time coming to a cancer risk management decision than women with a breast cancer history. Physicians were often discussed as being an integral part of the decision-making process by providing support and management recommendations. Family members and other mutation carriers filled a similar role during the decision-making process by providing decisional and emotional support for carriers. Genetic counselors were short-term providers of risk information and management recommendations for this study population. If a carrier was not receiving the information or support she needed from one of these groups, she often turned to another party, most commonly a healthcare provider. Thus, data from this study suggests that previvors or mutation carriers struggling with the risk management decision-making process may need additional support and information to assist them during this process. It is important that healthcare providers are educated about risk-management strategies for HBOC and work together to best help mutation carriers through the decision-making process. In summary, this study revealed that women with BRCA1 and BRCA2 mutations utilize physicians, genetic counselors, family members, and other mutation carriers in the cancer risk management decision-making process. The support and assistance from these individuals can impact the decision-making process. |
