Rare form of eye cancer afflicts 5 people in 1 million. Why 12 cases in Huntersville?

Kenan Colbert Koll, who died of ocular melanoma in 2014.
Kenan Colbert Koll, who died of ocular melanoma in 2014.

For years, Huntersville residents have wondered: Why has a rare form of eye cancer afflicted so many people in their pleasant town near Lake Norman?

Ocular melanoma is diagnosed in about 2,500 adults a year, or 5 to 7.5 new cases in 1 million people. Victims are most often men, and odds of getting it increase with age. Huntersville, oddly, flips those statistics.

Nine of the 12 victims who had lived, worked or often visited the town before their diagnoses were female. Six were younger than 30 when diagnosed. Three patients had attended Hopewell High School. Four people have died.

State officials have said the number of cases isn’t unusually high for Huntersville, which has a population of 52,000, or for Mecklenburg County as a whole. But town officials, backed by local legislators, this week commissioned more research.

A 2015 state report said most of the victims reported high exposure to ultraviolet light, such as through sunburns or tanning beds, which has been associated with the disease. Some health experts dispute the link to UV light.

Beyond that, health officials are stumped. Ocular melanoma has no known environmental cause.

The state’s inconclusive findings seemed only to stir a need for answers among families of the cancer patients.

Sue Colbert’s daughter, Kenan Colbert Koll, died in 2014. Colbert said her husband, Kenny, got mad when the couple then learned the town’s incidence of the cancer was “off the charts,” particularly at Hopewell, where their daughter had been a student.

That Colbert herself had worked at the school for seven years as a guidance counselor only prompted more questions. “Why not me?” she asked. “I was there longer.”

She credits town officials for acting on the families’ concerns. Last year local legislators secured a $100,000 state grant for more research.

“My goal is lofty,” Colbert said. “I would love for this research to help us find a cause, a reason that there are 12 cases of this cancer in Huntersville, and out of finding a cause, hopefully our doctors will find a cure.”

On Monday night, Huntersville commissioners approved a $14,600 contract for mapping that will essentially reconstruct the victims’ lives, by time and geography, to seek common denominators.

A second contract, for up to $59,000, will pay for genetic testing to learn whether a predisposition for the cancer is passed through families and for tissue tests to learn why cells turned malignant.

Huntersville town commissioner Rob Kidwell said he got involved two years ago, when the state produced a report he found incomplete and unacceptable. The new studies might lead to other work, such as soil tests in the area.

“There is no magic bullet,” Kidwell said. “We’re not going to find a cause, but we will look at the data and see where it leads.”

Dr. Michael Brennan, a retired ophthalmologist in Burlington, has worked to convene medical experts – including specialists from UNC, Duke University and Philadelphia – to help guide the Huntersville work.

Brennan was also struck by the number of cases of ocular melanoma in one town. He estimates he saw no more than 10 such cases in 40 years of practice.

Brennan doesn’t fault the state’s work in the Huntersville cases. But he said some cancer cluster studies overlook key data, such as by using the cities where patients are diagnosed instead of where they lived or worked.

“All I’m trying to do is get the smart people to talk to each other,” he said. “What we want to do is make this a personal investigation, as well as professional. The intent is to bring the consortium back to Huntersville and sit with families and patients and say, here’s what we know and don’t know.”

Bruce Henderson: 704-358-5051, @bhender