June 9, 2000

Grant paves way for expansion of Family Cancer Risk Service

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Nancy Saturn, president of the Tennessee Breast Cancer Coalition (left), Dr. Hal Moses, Susan Caro and Dr. Al George cut the ribbon to officially inaugurate the Vanderbilt-Ingram Cancer Center's newly expanded Family Cancer Risk Service. (photo by Dana Johnson)

Grant paves way for expansion of Family Cancer Risk Service

As the information pool deepens when it comes to cancer risk — especially inherited risk — the confusion also grows for many people trying to figure out what that news means to them.

To help worried clients put their concerns about inherited cancer risk into proper perspective, and with the assistance of a grant from the Tennessee Breast Cancer Coalition, the Vanderbilt-Ingram Cancer Center is expanding its Family Cancer Risk Service.

The service began in 1993 as a component of the Vanderbilt Breast Center and was provided on a part-time basis by Susan Caro, RNC, MSN, with her mentor, Dr. David L. Page, professor of Pathology.

As discoveries in genetics brought inherited predisposition testing closer to reality, the service grew to include genetic counselor Melinda Cohen, MS, assistant in Pediatrics, and consultants Dr. John A. Phillips Jr., David T. Karzon Professor of Pediatrics, and Dr. Cindy Vnencak-Jones, associate professor of Pediatrics and Pathology.

Vanderbilt-Ingram's Cancer Risk Service is now staffed full-time by Caro, who has been named director of the service, and genetic counselor Jennifer Moore, MS, CGC, who joined the division of Genetic Medicine earlier this year. Drs. Roy A. Jensen, R. Daniel Beauchamp, Mark C. Kelley and Alfred L. George Jr. have also served as consultants.

To date, the service has counseled almost 100 clients about familial cancer risk.

"There is so much about cancer risk in the popular press, and many people need help interpreting what they read and hear," Caro said. "Usually, what they've heard is just a piece of the truth. This service is designed to help clarify their concerns, help them understand what 'risk' really means for them and help them interpret all that information for themselves."

As the region's National Cancer Institute-designated cancer center, the Vanderbilt-Ingram Cancer Center has a responsibility to educate patients, families and clinicians about inherited cancer risk and options to reduce that risk, said Dr. Harold L. Moses, director of the VICC and Benjamin F. Byrd Professor of Oncology.

"The explosion in information about the genetics that underlie cancer creates incredible opportunities for improving detection, treatment and prevention," Moses said.

"However, we know that for many, this is complicated and sensitive information. Individuals and families need facts, presented in a safe environment, where all their risks and options can be fully considered in a caring, compassionate way. The VICC is pleased to be able to expand its service in this increasingly important arena."

Genetic factors in cancer must be carefully weighed along with other considerations, including lifestyle, in order to develop an accurate assessment of individual risk. There are complex social, psychological, ethical and legal issues to be taken into account as well.

"For instance, doing a family history can be very emotional for some people," Moore said. "We want to empower our clients to make the best decisions for themselves and provide a supportive environment in which that can happen."

Since the service began in 1993, most of the clients have been women concerned about breast and/or ovarian cancer risk. The service will continue to provide counseling and assessment for those types of cancer as well as others including colorectal and thyroid cancers. The service will also expand to involve consultants from other medical specialties such as gynecologic oncology, endocrine surgery and gastroenterology.

Earlier this year, Cohen and Phillips, director of the division of Medical Genetics and founding fellow of the American College of Medical Genetics, also began offering a weekly clinic for cancer risk assessment. Clients can be assessed and receive counseling for a number of familial cancers and genetic disorders associated with cancer. In addition to breast, ovarian and colorectal cancer, these include among others familial adenomatous polyposis (a rare, inherited form of colon cancer), Wilms' tumor, retinoblastoma, Bloom syndrome, Cowden syndrome, and neurofibromatosis.

"With an ever-increasing number of DNA-based tests becoming available, we want to be a resource to patients and physicians to inform them about these disorders and to provide risk assessment and testing," Cohen said.

Counseling begins with a comprehensive assessment of risk perception and expectations. Clients are assisted in gathering of accurate family information including precise documentation of relatives' cancer diagnoses. And they are educated about genetics and genetic testing before an individualized risk assessment is made.

If genetic testing is appropriate, the benefits and risks are fully discussed before the client makes a decision.

In many cases, the counselors say, clients are relieved to learn that their risk for developing cancer is not as high as they perceived it to be — although they emphasize that no one is at zero risk of developing cancer.

In cases where a patient is found to be at increased risk of developing cancer because of family history and other factors, options are discussed and a plan is developed for appropriate surveillance, prevention and other measures. Psychosocial support is provided as clients deal emotionally with their own risk and think through complicated issues such whether to share the information with other family members.