Factors affecting genetic testing and decisions about prophylactic surgery

Both of the articles reviewed here as well as the references, suggest that very little is actually known about the impact of many aspects of genetic testing. How decision are made about genetic testing in people who do not have cancer, how the results of testing are used used to guide care, and ultimately how people adjust to prophylactic surgery, which is the most effective form of prevention currently available to those who do have a mutation are not completely clear. This has many implications for practice in general. Oncology nurses who build relationships with those diagnosed with cancer and their families may be one of the best groups of professionals to provide the education and counseling individuals and families need prior to making any decision about genetic testing. Just as many responses to cancer exist, so do many responses to finding out the results of mutation status. Oncology nurses are challenged to help facilitate adjustment to learning that one carries a mutation that significantly increases risk of developing cancer. More nursing research needs to be conducted on how to facilitate this adjustment. Dealing with the unknown can be a frightening experience. Little is known about the long-term effectiveness of prophylactic mastectomy and oophorectomy in unaffected mutation-positive individuals. Most of what is known is based on retrospective review. Nurses are challenged to interpret this information, along with its inherent strengths and weaknesses, to individuals so they can make the best possible decisions. The psychosocial needs of those who undergo prophylactic surgery are not clearly understood. Surgery can have many psychological outcomes, and how individuals adjust to these changes is not clear. More nursing research is needed not only to understand these needs but also to design interventions to facilitate and improve adjustment to not only the information that one is mutation positive but also to prophylactic surgery. People who do not have cancer but have a high risk for cancer because of their genetic background need comprehensive and consistent care by knowledgeable healthcare providers. Although these individuals have not been diagnosed with cancer, they have complex psychosocial needs related to their family history and the decisions being made about prevention strategies. Oncology nurses can help fill this gap in care and provide the necessary support these individuals need.