Overview

Our knowledge of hereditary cancer genetics is rapidly advancing, as new information is being discovered at an accelerated pace. Consulting with an expert who is knowledgeable in cancer genetics is the best way to ensure information received is up-to-date and credible.

Some facilities, including those listed below, have specific high-risk clinics or programs that are devoted to risk assessment and risk management. In addition to geneticists and genetic counselors, these programs offer access to oncologists trained in management of hereditary cancer risks.

Finding a cancer genetics specialist
Cancer genetic counselors, geneticists, and risk assessment counselors are health care providers who are specialists in hereditary diseases. They can help individuals more clearly understand their risk for hereditary cancer. Geneticists are physicians with specialized expertise in hereditary diseases. Certified genetic counselors are health care professionals who have had specialized training and have earned a Masters degree in genetic counseling. The National Society of Genetic Counselor website offers a lookup tool for finding a certified genetic counselor by state and specialty (to find a genetic counselor who specializes in cancer genetics, choose “cancer” under the options “Area of Practice/Specialization”). Some healthcare facilities do not have genetic counselors on staff and for some people traveling to another facility is not possible. There is a company that provides genetic counseling consultations by telephone with board-certified genetic counselors.

Other health care providers such as nurses or oncologists may offer genetic counseling and testing. The amount of training these health care providers have received in the area of cancer genetics may vary; consequently their ability to provide comprehensive genetic counseling and interpretation of test results may also vary. It is important to know the qualifications of the person providing your genetic counseling. The National Cancer Institution has a lookup tool for health care providers offering genetic counseling and testing. This tool also provides information on the certification of the health care providers listed.

Finding a gynecologic specialist
Although an experienced gynecologist can manage the gynecologic care of most women, those who are at high risk for ovarian cancer need a gynecologic specialist familiar with specific diagnostic, screening or prevention protocols for high-risk women. Many facilities refer high-risk women to specialists known as gynecologic-oncologists: although these specialists often treat ovarian cancer, they are also trained in screening for ovarian cancer, spotting abnormalities that might indicate cancer, are familiar with the high-risk protocol which should be followed for prophylactic surgery and can perform full staging if a cancer is found. You can find a gynecologic-oncologist near you through the website for the Society of Gynecologic Oncologists.

Finding a breast specialist
Breast surgeons, radiologists, and medical breast oncologists are specialists trained in the screening, diagnosis and treatment of breast cancer. Radiologists are responsible for the screening aspects of risk management, including breast ultrasound, mammograms, MRIs, and guided biopsies of abnormal findings. Breast surgeons are involved in the clinical breast exam, surgical biopsies of abnormalities, lumpectomies, and mastectomies, either for breast cancer treatment or as risk-reducing surgery. Medical breast oncologists manage chemotherapy for breast cancer treatment and chemo-prevention for high-risk patients. At some facilities it is the breast medical oncologist and not the breast surgeon who performs the clinical breast exam.

Special clinics for high-risk women
Many high-risk clinics, such as those listed below, have a “multi-disciplinary” approach to managing high-risk patients: the radiologist, breast surgeon, breast oncologist, and gynecologic-oncologist consult together in one facility to determine the best care for their high-risk patients.