Follow-up of patients who did not prefer for genetic testing after hereditary breast and ovarian cancer syndrome pre-counseling

Abstract

　For breast cancer patients with suspected hereditary breast and ovarian cancer, our institution has established an outpatient genetic counseling clinic since 2015, where genetic counseling and testing are provided after pre-counseling. We encountered a patient who did not prefer to undergo genetic testing; however, showed a pathogenic variant in the results of a later genetic test. This experience reminded us of the importance of follow-up. Therefore, we examined the background and follow-up status of patients who did not prefer to undergo genetic testing and discussed recommended follow-up after pre-counseling. Eighty-eight percent of the patients did not wish to undergo genetic testing, and the top three most common reasons included psychological burden, impact on blood relatives, and financial burden, respectively. Nine patients were actually followed up. The trigger for follow-up was a prior appointment to confirm intent for genetic testing and a non-genetic related consultation. Based on our experiences, follow-up after pre-counseling should establish policies and standards at the facility. Additionally, it would be useful to have someone like the HTC who connects genetic medicine and breast cancer care to help facilitate collaboration within and outside the institution.