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Duke Cancer Institute
Durham, North Carolina
888.275.3853 (888.ASK.DUKE)
dukecancerinstitute.org

Genetic Counseling and Testing Service

Offers risk assessment and education to cancer patients and people with a family history of cancer or other cancer risk factors. Board-certified genetic counselors work closely with medical oncologists to provide each patient with information about their personal risk of inherited cancers, ways to reduce the chance of developing cancer, and ways to increase the chance of early detection.

The Hereditary Cancer Clinic tests for predisposition to breast, colon, and ovarian cancers, as well as for other common and rare cancers. The clinic monitors new developments in cancer genetics and continuously evaluates new testing procedures. Services are offered at Duke University Medical Center and Duke Raleigh Cancer Center, as well as via teleconferencing for patients in rural areas. (Federal law prevents health insurance companies from denyingcoverage or raising rates due to the results of genetic tests).

Location

Durham, North Carolina

Faculty and Staff

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.

Linda Farkas, MD, is a colorectal surgeon with expertise in hereditary colon cancer syndromes. She is a Fellow of the American College of Surgeons and the American Society of Colon and Rectal Surgeons. She graduated from Loyola University Chicago Stritch School of Medicine and trained at Cook County Hospital in Chicago.

Andrew Berchuck, MD, is a gynecological oncologist with expertise in hereditary ovarian and uterine cancer syndromes. He also leads a nationally recognized program in translational ovarian cancer research. Dr. Berchuck graduated from Case Western Reserve University School of Medicine and trained at Sloan-Kettering Cancer Center.

Andrew Wolf, MD, is a gastroenterologist with expertise in hereditary colon cancer syndromes. He graduated from Jefferson Medical College of Thomas Jefferson University and trained at Duke University Medical Center.

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.

Schedule an Appointment

Call 919.684.3181


Intake Process

Education-Physician and Community Awareness

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.

Identify Subjects Eligible for Genetic Testing

Individuals are typically referred by local physicians based on a family history of cancer and/or a personal history of cancer with hereditary features. 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 children, brothers and sisters, parents, aunts and uncles, cousins 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 members 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.

Pre-test Counseling

The consultation is an in-person meeting between the counselor and the patient, and the medical oncologist if needed. 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 submit a sample (blood or cheek swab) at the time of the appointment. 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.

Informed Consent Procedures

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.


Testing

Confidentiality Standards

Information discussed during consultations is entered into patients' Duke medical records. 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 and Federal laws. Information obtained on an individual or family may not be released without a signed release form.

Testing

Duke laboratory performs a limited amount of genetic testing.  Most genetic testing must be sent to laboratories outside of Duke. When possible, the Hereditary Cancer Clinic sends genetic tests to laboratories that process and accept patients' health insurance information.

Laboratory Quality Assurance

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

Test Result Interpretation

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


Cancer Risk Counseling and Follow-Up

Post-test Counseling

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.

Cancer Screening

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

Medical and Surgical Management

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. Referrals to other clinicians (e.g. surgeons, GYN oncologists) who can give expert guidance are facilitated as appropriate.

Psychological and Supportive Services

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

Research

The Hereditary Cancer Clinic is involved in many on-going cancer genetics research projects. Patients seen in the clinic will have the option to participate in research when it is appropriate. Current projects include:

The BRCA1/2 Adherence Study is examining what health behaviors are performed by women who have a BRCA1 or BRCA2 mutation but have not had cancer. Findings from this study will help determine whether such women are performing recommended behaviors and what the Hereditary Cancer Clinic can do to encourage women with mutations to take care of their health.

The Breast Wellness Clinic is for women at increased risk of breast cancer and is directed by Dr. Victoria Seewaldt in the Division of Medical Oncology. It collaborates with a multi-institutional program investigating cancer prevention strategies and also uses techniques like random fine needle aspiration of the breasts to assess breast cancer risks.

The Pancreatic Cancer Biomarkers Study is investigating whether certain proteins are useful for detecting pancreatic cancer early in individuals at increased risk of pancreatic cancer.

The Hereditary Cancer Clinic can also facilitate participation in several cancer gene discovery and screening studies at other institutions.