Characteristics of young women enrolled in a high-risk breast cancer screening program

Abstract

1512 Background: Young women at higher risk for breast cancer may benefit from enrollment in a dedicated surveillance program to ensure that their unique needs for examination, imaging, and risk modification are met. Though these programs do exist, little information is known about their effectiveness. In this pilot study, we sought to characterize the patients enrolled in our high-risk screening program. Methods: The Special Surveillance Breast Program (SSBP) at the Memorial Sloan-Kettering Cancer Center (MSKCC) was initiated in 1992 and enrolls patients in four categories: known and probable genetic mutation carriers, atypia, LCIS, and positive family history. Data is collected prospectively in an IRB-approved database and reviewed retrospectively. Patients enrolled from 1992 to March 2008 were included. Inclusion criteria included age under 40 and at least one follow-up visit. Data was validated with the patients’ medical records. Results: Four hundred and thirteen patients met inclusion criteria. The median age at enrollment was 33. The median duration of enrollment was 41 months. Defining continued participation as having a follow up visit in 2008, 193 patients (48%) were retained. At enrollment, 247 patients (60%) had ever undergone screening breast imaging. Of these, 216 patients (52%) had undergone screening in the past 2 years. At the most recent visit, 394 patients (95%) had ever undergone screening breast imaging and 376 patients (91%) had undergone screening in the past 2 years. Of the patients who had not had any radiologic screening, 18 patients (78%) were under the age of 35 at the most recent visit. Two hundred and ninety one patients (70%) reported performing self-breast exams. Two patients were diagnosed with cancer during their participation. An additional six patients underwent prophylactic surgery at MSKCC. Conclusions: Enrollment in a high-risk screening program was associated in an increase in any utilization of radiologic screening from 60% to 95%. It is unknown how this would compare to similar high-risk populations not enrolled in any program. Considering their voluntary enrollment and return for follow-up, these women are likely highly motivated regarding their health care. Further prospectively collected survey data from patients, including those who did not return after their initial visit, is planned. No significant financial relationships to disclose.