In-Person Consult Desired When Learning of Breast Cancer Risk

Newswise — If you were being told that you were at genetic risk of developing breast cancer, would you want to find out over the phone? New research findings by a team at The Cancer Institute of New Jersey (CINJ) and Fox Chase Cancer Center (FCCC) in Philadelphia, found that convenience played a large role in the findings to that question. The findings were recently presented at the annual San Antonio Breast Cancer Symposium. CINJ is a Center of Excellence of UMDNJ-Robert Wood Johnson Medical School.

In recent years, a blood test that identifies mutations in the breast cancer genes BRCA 1/2 has been used to screen for genetic predisposition to the disease. According to the National Cancer Institute, those found to have one of these mutations are three to seven times more likely to develop breast cancer and more likely to develop ovarian cancer than those who don't. As demand for genetic testing increases, delivering results by telephone, with or without a genetic counselor, rather than the traditional practice of in-person disclosure in the context of genetic counseling is occurring more frequently.

The pilot study of 27 women and three men, who underwent BRCA 1/2 cancer risk assessment at CINJ and FCCC, included 26 participants who already received their results in person. Ninety-percent of that group indicated they were satisfied with being notified by their genetic counselor face to face. However, when asked about receiving results by phone, 45 percent overall said if they had to do it again, they would be interested. Three out of the four who had not yet received their results also expressed interest in receiving their results in this fashion.

There were, however, differences among the group who had already received results based on individual outcomes of the test. Although interest in phone disclosure was high among those with negative results (55 percent) and those with uncertain results (62 percent), only 25 percent of participants who were found to have a BRCA1/2 mutation would have been interested in receiving that information over the phone.

Lead author Linda Patrick-Miller, PhD, director of the Division of Behavioral Sciences at CINJ and assistant professor of psychiatry at UMDNJ-Robert Wood Johnson Medical School, noted a related study of genetic counselors in which the CINJ team was involved. Although nearly all genetic counselors reported they sometimes disclose results by phone, about a third of those surveyed questioned that practice. Their most frequent concern was for patients who did not follow"up with an in-person appointment to learn how they can best manage their cancer risk.

Dr. Patrick-Miller stressed the latest findings by the CINJ team indicate further investigation is warranted on the advantages and disadvantages of receiving such information via phone call. "Those undergoing the testing are asked as early as three or four weeks in advance of receiving results how they would like to be notified. At that point, many may opt for convenience," she said. "But as the time draws nearer and they're preparing themselves for what potentially could be life-altering results, they may desire an in-person consult instead."

The CINJ and FCCC research team -- which includes Patrick-Miller and Angela Bradbury, MD, medical oncologist at FCCC -- is planning a follow-up study on the subject, in which patients who have received BRCA 1/2 results by either phone or in person, will be followed for one year to understand the impact of those procedures. This will include how individuals follow recommendations made by clinicians to prevent or reduce their risk of developing cancer.

About The Cancer Institute of New JerseyThe Cancer Institute of New Jersey (www.cinj.org) is the state's first and only National Cancer Institute-designated Comprehensive Cancer Center, and is dedicated to improving the prevention, detection, treatment and care of patients with cancer. CINJ's physician-scientists engage in translational research, transforming their laboratory discoveries into clinical practice quite literally bringing research to life. The Cancer Institute of New Jersey is a center of excellence of UMDNJ-Robert Wood Johnson Medical School. To support CINJ, please call the Cancer Institute of New Jersey Foundation at 1-888-333-CINJ.

The Cancer Institute of New Jersey Network is comprised of hospitals throughout the state and provides a mechanism to rapidly disseminate important discoveries into the community. Flagship Hospital: Robert Wood Johnson University Hospital. Affiliate Hospitals: Bayshore Community Hospital, Carol G. Simon Cancer Center at Morristown Memorial Hospital, Carol G. Simon Cancer Center at Overlook Hospital, CentraState Healthcare System, Cooper University Hospital*, Jersey Shore University Medical Center, JFK Medical Center, Raritan Bay Medical Center, Robert Wood Johnson University Hospital at Hamilton (CINJ at Hamilton), Saint Peter's University Hospital, Somerset Medical Center, Southern Ocean County Hospital, The University Hospital/UMDNJ-New Jersey Medical School*, and University Medical Center at Princeton. *Academic Affiliate