Penn and FORCE Establish First Peer-Support Helpline For People Concerned About Hereditary Breast and Ovarian Cancer

University of Pennsylvania School of Medicine
Monday, 24 November 2003

Facing Our Risk of Cancer Empowered (FORCE), a national advocacy group for women concerned about hereditary breast and ovarian cancer, has joined with the Abramson Cancer Center of the University of Pennsylvania and Penn's Department of Psychiatry to establish the nation's first peer-support helpline for women with a hereditary risk of developing breast and/or ovarian cancer. All volunteers who answer the phones will have undergone genetic counseling. The toll-free helpline will begin operations on Tuesday, December 2, and can be reached by calling: 1-866-824-RISK (7475).

"Confronting real fears about illness – such as breast and ovarian cancer – is as important in treating a patient as dealing with the illness itself," says James Coyne, PhD, a Professor of Psychiatry (Psychology) at the Abramson Cancer Center of the University of Pennsylvania. "This helpline is part of a continuum of cancer care that stretches from early prevention through to treatment."

Women, or men, who call into the helpline have direct access to any one of 20 volunteers located across the country. Aside from direct contact and emotional support, helpline volunteers are equipped with a 72-page resource guide for offering referrals and information to more than 200 key information sources about hereditary risk and genetic counseling. Volunteers can also direct callers to centers for genetic counseling, and essentially offer direct, one-on-one contact with a woman whose experience more closely resembles the caller's – by age, marital and family status, and by choice of action – some women choose surgery as an option, others do not. Medical questions will not be answered by helpline volunteers. Instead, callers will be referred to the nearest sources of clinical expertise, including services available at the Abramson Cancer Center.

"Increasing numbers of women are finding out about their family history of breast and ovarian cancer, seeking genetic counseling and, depending on many factors, getting screened for their genetic risk of developing the disease," says Sue Friedman, executive director of FORCE. Friedman, a breast cancer survivor and carrier of BRCA2 mutation, founded FORCE in 1999. "This helpline meets the growing need for more personal and informed support – beyond what is available through other telephone lines and websites – by offering direct help from people who have experienced that same unknown fear of what may – or may not – lie ahead."

Funding for this project is provided through a research grant from the US Department of Defense Breast Cancer Research Program. Satisfaction surveys will serve as the formal evaluation of the effectiveness of the hereditary breast and ovarian cancer helpline for providing risk-management information and support to the high-risk community.

Statistics show that up to 10 percent of breast and ovarian cancers are hereditary. Not all hereditary breast and ovarian cancers are caused by a BRCA mutation. The decision to be tested is a highly personal one that should be discussed with a doctor who is trained in counseling patients about genetic testing.

For more information, or to contact University of Pennsylvania School of Medicine, see their website at: www.med.upenn.edu/