Chandrika Rao, PhD.
Director, North Carolina Central Cancer Registry
(NAACCR Communications Committee, NAACCR Narrative Production Editor)
The North Carolina Central Cancer Registry investigated the incidence of a rare form of cancer, ocular melanoma diagnosed among five young women ages 19-31 during 2008-2014. Three of these young women attended the same high school in Huntersville, North Carolina. Ocular melanoma diagnosed clinically and treated with minimal histologic confirmation, for it to strike outside of its usual demographics makes the push to see action so understandable. This ocular melanoma investigation has underscored the importance of our relationship with community physicians and their role in our case ascertainment efforts.
According to the Ocular Melanoma Foundation (http://www.ocularmelanoma.org/disease.htm), approximately 2,500 adults are diagnosed with ocular melanoma in the United States each year. The incidence is approximately 5 to 7.5 new cases per one million people per year. Males have an increased incidence compared to females, and incidence is highest among people with lighter skin and blue eyes. The incidence rate increases with age and peaks near age 70. Further, among those who develop metastatic ocular melanoma, 90% of patients also develop liver disease. Approximately 50% of ocular melanoma patients will develop metastatic disease within 15 years of the original diagnosis; currently there is no cure for metastatic ocular melanoma.
The CCR did not observe an excess of ocular melanoma cases, and the NC Occupational and Environmental Epidemiology Branch (OEEB) reported that there were no obvious environmental causes identified. Still, perhaps due to the atypical nature of these cases, the investigation was continued to identify potential underlying etiology.
This article details the process taken to ascertain the cases diagnosed and treated in another state. How the process of identifying and following up with physician offices, reviewing hundreds of records received to confirm the diagnosis of ocular melanoma was so time and resource-intensive.
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