Cancer risk assessment in a hereditary cancer prevention clinic and its first year's experience

Abstract

BACKGROUND. Hereditary cancer accounts for 5-10% of the estimated 1.38 million cancer cases in 1997 and requires an approach to cancer prevention that is distinct from its sporadic counterpart based on its differing natural history. The laboratory advances in the molecular biology of hereditary cancer have recently resulted in the development of specialized hereditary cancer clinics with both broad and syndrome specific hereditary cancer assessment capabilities. A key question is how well these clinics can accomplish this new mission. METHODS. A total of 58 people underwent hereditary cancer risk assessment in the Creighton University Hereditary Cancer Prevention Clinic from September of 1995 to September of 1996. Assessment included construction of a detailed pedigree and a cancer-directed medical history and physical examination. Cancer education, genetic counseling, the option of DNA testing when appropriate, and cancer prevention recommendations based on cancer risk were provided. RESULTS. The 58 patients were comprised of 51 females (88%) and 7 males (12%) predominantly from the Omaha, Nebraska geographic region. Forty patients (69%) were cancer unaffected whereas 18 (31%) were cancer affected; patient age ranged from 6 to 70 years with a mean age of 40 years. Thirty (52%) of the patient families were diagnosed with a hereditary cancer syndrome, 24 (41%) were diagnosed with familial cancer risk, and 4 (7%) were diagnosed with sporadic cancer risk. Of the 30 families with hereditary cancer syndromes, only 4 (13%) individuals have so far undergone DNA testing due to a variety of emotional, financial, insurance, and technical barriers. CONCLUSIONS. The authors have successfully implemented a clinically applicable hereditary cancer prevention program based on their expertise in hereditary cancer risk assessment that offers DNA testing through a commercial laboratory to patients diagnosed with hereditary cancer syndromes. However, a number of barriers to DNA evaluations exist that will require discussion among the medical, legislative, insurance, and lay communities in addition to further research in hereditary cancer risk assessment, genetic counseling, and cancer prevention strategies.