National Comprehensive Cancer Network

Durham, North Carolina

P. Kelly Marcom, MD, directs the Hereditary Cancer Clinic. He is a board certified Medical Oncologist trained at Duke University Medical Center. He graduated from Baylor College of Medicine.

Robin H. King, MS, is a Board Certified Genetic Counselor who specializes in cancer risk assessment and education. She graduated with a Master's degree in Genetic Counseling from Mount Sinai School of Medicine in 2002.

Tracey P. Leedom, MS, is a Board Certified Genetic Counselor who also specializes in cancer risk assessment and education. She graduated with a Master's degree in Genetic Counseling from UNC-Greensboro in 2003.

Adam H. Buchanan, MS, MPH, is a Board Certified Genetic Counselor who provides cancer genetic counseling to patients at Duke and several outlying community hospitals, including Duke Raleigh Hospital. He is also involved in research on improving access to cancer genetic counseling among underserved populations. Mr. Buchanan graduated from the Genetic Counseling program at UNC-Greensboro in 2004 and from the School of Public Health at UNC-Chapel Hill in 2000.

Call 919.684.3181

Periodic lectures to health care providers and community groups help to educate and raise awareness of cancer genetics issues. The clinic has close interaction with the Cancer Prevention, Detection, and Control Program, as well.

Individuals are referred by local physicians based on a family history of cancer and/or a personal history of early-onset cancer. Once the referral has been made, the individual will be contacted to set up an appointment and begin the cancer risk assessment.

The first step is a telephone call to gather a brief personal medical history and history of cancer in the family. This call allows genetic counselors to perform cancer risk assessment prior to a consultation. Patients will be asked about their brothers and sisters, parents, aunts and uncles, and grandparents. Important information includes ages of relatives (both those with cancer and those without), and type of cancer and age at cancer diagnosis in affected relatives. This information is used to draw a pedigree, or family tree, for the patient. We encourage individuals to talk to their family member to get as much information as possible, and to estimate ages when necessary. Personal risk factors assessed include ages at which a woman has her first period and first child. Generally, the family history collection takes about 10-15 minutes on the telephone.

The consultation is an in-person meeting between the counselor, the medical oncologist, and the patient. We encourage individuals to bring a friend or family member as a support person. We discuss three main areas: cancer risk assessment, hereditary risk assessment, and options for medical management.

The consultation usually lasts about one hour. It typically begins by the counselor addressing any concerns or questions the individual may have. Medical and personal histories are elicited, and the family history is reviewed. The genetic counselor then discusses hereditary cancers (cancers that run in families). If family and personal medical histories show that genetic testing is appropriate, we discuss how testing is done, its benefits and limitations, and implications of possible results. We present options for medical management based on personal and family history of cancer. Patients who choose to pursue testing can have their blood drawn at the time of the appointment and sent for testing. If testing is not appropriate, we will discuss cancer risks based on the patient's personal and/or family history of cancer, as well as options for methods of early detection, risk reduction and/or prevention.

If genetic testing is initiated, information concerning the test is thoroughly discussed during the counseling session. This includes the type of test available; its purpose, cost, and potential benefits and limitations; possible test results (positive, negative, and inconclusive) and their implications; and cancer risk management options. Written consent is obtained before a sample is drawn.

Information discussed during consultations is entered into patients' Duke medical records, unless the patient requests for it not to be. Having this information in the medical records can help patients' other healthcare providers give them more personalized care and cancer risk management. Patients' genetic counseling information in the medical records, just like all medical record information, is protected from unauthorized access by HIPAA. It is also protected from discrimination in health insurance and employment by North Carolina laws. Information obtained on an individual or family may not be released without a signed release form.

No hereditary cancer genetic tests are performed at Duke. When possible, the Hereditary Cancer Clinic sends genetic tests to laboratories that process patients' health insurance information.

CAP/CLIA accreditation is current at all testing laboratories that Duke Comprehensive Cancer Center uses.

The test result is interpreted by the physician and genetic counselor based on the findings of the laboratory, published information about the mutation and condition, and the patient's personal and family history. A letter summarizing the details of our consultation and our recommendations is sent to the patient for their records.

Results of genetic testing are discussed by phone and/or via in-person consultation with the genetic counselor, medical oncologist, and the patient, depending on test result and patient preference. Again, individuals are encouraged to have a support person present. The test results are interpreted for them, and follow-up management is discussed. If testing of additional family members is appropriate, their access to genetic testing is facilitated.

Screening recommendations are made from published recommendations and expert opinion based on the individual's family and medical history.

Chemoprevention and prophylactic surgery options are discussed with individuals in detail by the medical oncologist. Guidance is provided to help make one's decision regarding these options.

Individuals in need of psychological or supportive services are referred to Duke's Cancer Patient Support Program.