Cluster of rare eye cancer cases concerning residents in Huntersville
HUNTERSVILLE, NC (WBTV) - Twelve families in Huntersville now know the effects of a rare eye cancer called ocular melanoma. It's so rare that statistics show only five out of a million people typically get it.
People in Huntersville are trying to understand why their neighbors are coming down with the cancer.
There are treatments, but the scary part of the disease is the cancer can spread from the eye. It has shown up in people's livers, which can be deadly. Doctors don't know why it spreads or what causes it.
Vicki Kerecman is one of the 12 people who lived in Huntersville and was diagnosed with ocular melanoma.
"Thankfully, as of my last checkup, my tumor has flattened out, fluid has gone away from my retina, things look good in my eye," Kerecman said. "I can't see out of my eye, but I'm happy to have my eye. I'm happy to be healthy and here today."
Kerecman listened Friday as the Lake Norman Chamber of Commerce held a forum about the disease. The chamber invited Dr. Kathleen Gordon, Medical Director of the Department of Ophthalmology at UNC-Chapel Hill, to talk about ocular melanoma.
Gordon explained it's a cancer that appears in the eye, sometimes appearing as a brown freckle, that grows into a tumor. She said they are interested in meeting the people in Huntersville with the disease, and the families of those who have died from the disease so they can try to understand what causes it.
Dr. Gordon encouraged families to register with the UNC Health Registry and Cancer Survivorship Cohort so researchers can learn from this rare group of families. Gordon said UNC doctors say the number of Huntersville cases are weird, and that they are struck by the number of young patients.
Kenan Colbert Koll died in 2014. Her parents, Kenny and Sue Colbert, discovered that there were four women in Huntersville who were 30 or younger who had ocular melanoma. Kenny Colbert told the audience at the forum that the women either graduated or lived near Hopewell High School. Since Kenan was diagnosed in 2009, the Colberts have found 12 cases in Huntersville.
"I have no idea what Kenan would want, but we just think she would want to say 'mom and dad, something is not right. You dig into this,'" Kenny Colbert said.
"Statistically, what is happening is impossible, and we're seeing chamber members, were seeing businesses, we're seeing families impacted by this and we have to get down to the root cause. What is causing ocular melanoma in these young ladies?" Bill Russell, the President of the Lake Norman Chamber of Commerce said.
"Something is wrong, or this is just off the charts of freakiness. What are the odds of something like this happening?" Colbert said.
The Colberts have bonded with the other families and they are committed to figuring out the cause.
"It is a movement. They're not going to be stopped, the parents are not going to be stopped. We're going to get down to the root cause of this and we're going to stop it," Russell said.
Colbert said he has been trying to get someone to test the soil and the air near Hopewell High School since 2014.
"Mecklenburg County knew there was a problem and admitted there was a problem. They, in essence, said the school has to initiate the action. And then you go to the school and they say the county has to initiate," Colbert said. "So, everybody was passing the buck."
But last month, Kenny Colbert received some good news.
"Finally, in the last couple of weeks CMS has jumped up and said 'we will allow you to come on site, and we will in fact even pay for the testing.' That's huge," Colbert said.
Huntersville commissioner Rob Kidwell said testing should begin in a couple of weeks. He warns it's possible they might not find a smoking gun. Things like soil, air, and building materials are going to be tested.
Kerecman said she realizes it won't be easy.
"I hope they figure out the testing they need to do," Kerecman said. "It's kind of hard to test for something that you don't know what the cause is."
Eye doctors are also helping graduates of Hopewell High School who want to test for the rare disease. There is an ocular screening line provided by Horizon's in Huntersville, 704-341-7360. Colbert thinks the program will give people peace of mind.
"You got a lot of people running around here 18 to 30 years old who've never been to an eye doctor, and they need to have their eyes dilated and an ophthalmologist to look at them," Colbert said.
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