Summer Heath was home from college in the summer of 2013 when she told her mom about her headaches and blackouts, about how she’d been turning her head more and more to see so she could apply mascara on her right lashes. She didn’t realize it was because her vision in that eye had all but disappeared.

She resisted going to an eye doctor. It was July 1, and she planned to drive to the beach in Wilmington, North Carolina later that day. Migraines were common throughout her childhood, after all. But Summer’s mother, Jane Slusarick, insisted. She was working in one of Charlotte’s largest ophthalmology practices and squeezed Heath in at the last minute. 

“When they checked her vision, she couldn’t see the ‘big E,’” Slusarick said. “I knew it was a tumor.”

Within days, doctors confirmed it was ocular, or uveal, melanoma — cancer in the eye. Ocular melanoma is only diagnosed in 2,500 people each year across the U.S. About half of cases end up metastasized, and then the chance of survival is low. It’s a disease typically found in middle-aged men. Heath was 19.

She was whisked from her home in Huntersville, a growing middle-class town 20 miles north of Charlotte, to Philadelphia, where she was treated with radiation to neutralize the tumor. 

“The technician was so surprised at Summer’s young age,” Slusarick said.

And then, the tech told Heath something she didn’t expect. He had recently seen two other girls from her high school: Kenan Koll (née Colbert) and Merideth Legg.

They had graduated from Hopewell High School ahead of Heath and were diagnosed with the same cancer in 2009. Their families thought it was a fluke until they connected with Slusarick online. Soon, more people came out of the woodwork: a young woman who lived in a subdivision next to the school. Another who lived just down the road. There were 15 cases analyzed by the time Huntersville officials attempted to investigate possible causes in 2015. 

Slusarick grew more concerned. “It has to be a cluster,” she thought.

I grew up in Huntersville and graduated from Hopewell. This year, I traveled home to talk to families and officials about the growing concern of cancers in the area. As North Carolina and other states take action to shut down and clean up coal plants, suspicions have swarmed that historic pollution beneath Huntersville and neighboring towns could be related to energy development. But pinpointing a cause of disease, and who might be responsible, is difficult. Their search has left a trail of fragmented data points and unexplained diagnoses throughout the region.

Around the turn of the 20th century, Duke Energy (formerly Duke Power) started building dams along the Catawba River, which snakes through the Carolinas, to sell hydroelectric power to local industries. In 1963, the last of these projects filled a rural valley in the wooded farmland of central North Carolina, drowning two textile mills, homes, family cemeteries, and a Revolutionary War memorial. It created Lake Norman, the largest lake in the state.

Duke built a coal-fired steam station and a nuclear power plant along the lake’s shores soon after it was filled. Today, the utility maintains 75 power plant sites in the Carolinas, six of which are retired.

By 1977, more than 3,000 families had settled around Lake Norman, driven by the promise of a quiet suburban life and access to fishing and recreation. My family was one of those attracted to the area when my parents’ textile jobs moved us south from New England in 1994. I was five. I made a friend, Pete Colbert, soon after we arrived. His sister Kenan was later one of the town’s first diagnosed cases of ocular melanoma. 

When we were kids, open fields still covered much of the town. By 2003, my freshman year at Hopewell High, many of them had become parking lots and shopping centers. The population exploded; multi-million dollar homes and golf courses sprung up close to the lake. Huntersville is now a destination for large companies and commuters to Charlotte. 

Lake Norman represented adventure and mystery: rumors swirled that cars rested in murky graves; an abandoned house on an island was popular with boaters and high school students sneaking beer and cigarettes. After I left for college, more serious concerns took hold. People worried the industries that built our communities contributed to health risks. 

“You’ve had a lot of things that could have contributed to pollution,” said Owen Duckworth, a professor at North Carolina State University who studies how contaminants move through soil. “We don’t know. Unless somebody tests for it, we don’t know where anything is. That’s sort of the standard.”

Many sites around North Carolina, the South, and the U.S., like Superfund sites and industrial facilities, are required by federal and state governments to test for pollutants. But there are no unified standards for environmental testing when communities develop schools, neighborhoods, or commercial buildings. Data about the effects of contamination that occurred before federal clean air and water laws were enacted is lacking, and there’s little research on how environmental hazards could contribute to diseases like cancer. These gaps in information can influence decisions about whether to investigate health concerns.

Within a year of Heath’s diagnosis, Koll and Legg had died. Koll was 28. Legg was 26. Their parents dedicated themselves to researching possible explanations for their deaths, but they were denied access to construction records and told testing was not necessary at the school.

“It is possible that there is an environmental risk for cancer in the area,” the North Carolina Department of Health and Human Services wrote to Meredith’s father, Basil Legg, in 2013. “However, we do not see a higher occurrence of cancers in the populations usually associated with environmental factors at this time.”

The agency said there was no “consistent pattern of cases.” But North Carolina’s cancer registry didn’t include Koll or Legg since they were diagnosed outside of the state. Many health experts I spoke to said state cancer registries are often incomplete, which makes it difficult to catch higher concentrations of rare diseases.

While nine ocular melanoma cases were expected in Huntersville and the neighboring town of Cornelius between 2000 and 2013, a 2015 report only found seven. Occurrences were too low to warrant status as a “cluster,” a definition that usually requires that cases are proven to be linked.

After two years of pressure led by Hopewell parents, the school district conducted an internal investigation, hiring local analysts to look into Hopewell’s construction records. The firm found no evidence that workers encountered suspicious material and decided not to take water or soil samples.

In 2016, North Carolina state Sen. Jeff Tarte, a Republican, secured $100,000 in the state budget to investigate, and the town established a committee to decide how it would be spent. The families demanded soil and water testing, but the committee chair decided against it, saying testing is already so sparse in the region that anything they might find has no baseline to compare to. 

Robin Smith, an environmental attorney who worked for North Carolina’s environment and natural resources department from the late 1980s to 2012, said soil and water testing outside of state or federally permitted sites isn’t required in many states, including North Carolina. Sampling is usually only required if there’s a known issue like a documented spill, and agencies lack the resources to exhaustively test everywhere. States are often wary of imposing too many regulations.

“You’re always balancing what is a reasonable requirement for every development project, and that’s a hard thing to do,” she said. “No state has managed to do that perfectly.”

Instead of environmental testing, the committee hired Columbia University researchers to study patients’ tumor tissue. It also financed an analysis that cross-referenced 15 patient interviews with local and federal environmental data, which was largely inconclusive. But it pointed to the presence of PCBs and other industrial pollution like tritium, a radioactive isotope released into the area’s drinking water supply from Duke Energy’s nuclear plant on Lake Norman in 2007, which was measured below federal standards.

Huntersville’s ocular melanoma committee asked the analysts, Hart & Hickman, for a follow-up environmental study with sampling. The company declined, saying they didn’t know where to test or what to look for. Thousands of chemicals could be present. 

“If you really wanted to test, where do you start?” Hart & Hickman’s principal engineer, Matt Bramblett, told the families during a meeting in February. “It’s tough.”

Taylor Wind, a 16-year-old living just 20 miles north of Huntersville in Mooresville, a small town located along Lake Norman in neighboring Iredell County, was diagnosed with papillary thyroid cancer in 2017. Within days, her mother Susan Farah-Wind said people were knocking on her door saying they, or their kids, had also been diagnosed. She wanted to know why.

“There’s hardly any research,” an endocrinologist at Wake Forest University told her. “And, she said, ‘There’s no money.’”

Within six months, Farah-Wind held a 5K race and raised more than $100,000 to finance environmental research by researchers from Duke University. 

Dr. Heather Stapleton, an expert on thyroid cancer who works on the study, said this is not the first time she’s seen researchers hired with private funds. It’s difficult to pursue environmental studies since research money is often dedicated to patient care. 

“I just find it unfortunate that communities have to raise the money to do this,” she said. “In my opinion, it should be funded by federal agencies.”

Thyroid cancer’s causes are not clear, though it has been tied to radiation exposure. Women are about three times more likely than men to develop it, and people are typically diagnosed in their 40s. While thyroid cancer rates are rising across the nation, Stapleton’s team found that they were significantly elevated in Iredell County. A January 2019 report from the North Carolina state epidemiologist confirmed this, saying thyroid cancer was diagnosed as much as three times more than state averages in parts of the county between 2010 and 2016.

“Certainly we need more science here. Just look at the fact that we know smoking causes lung cancer,” Stapleton said. “To me, it makes sense that other chemical exposures that occur in our daily lives, through normal behavior, could also lead to it. It’s just a matter of understanding what those exposures are over time.”

Stapleton’s team is currently taking soil samples across Iredell County to test for radioactive material, heavy metals, and disinfection byproducts like chlorine that have been associated with cancer. Their work is focused on local industrial activity, including a plastics facility that produces chemical byproducts, pesticides used around the lake, and a Duke Energy coal plant on Lake Norman, the Marshall Steam Station.

Like many Southern states reliant on coal-fired power generation, North Carolina is debating how to clean up coal ash — a byproduct of coal combustion that contains heavy metals like mercury, arsenic, and cadmium — and what potential health risks are associated with it. 

Nearly every river system in North Carolina has an ash impoundment on its banks, said Frank Holleman, an attorney with the Southern Environmental Law Center, which has sued Duke Energy in multiple states. In 2014, about 39,000 tons of coal ash from a Duke facility spilled into North Carolina’s Dan River. Soon after, state lawmakers designated the Riverbend Steam Station, a retired coal-fired power plant built on Mountain Island Lake near Hopewell High and downstream from Lake Norman, as a priority cleanup site since it sits next to a major drinking water source for Charlotte.

According to a recent report by environmental groups, 91% of coal plants have unsafe levels of one or more coal ash constituents in groundwater directly beneath its coal ash basins. Some of the highest levels were found at Duke’s Allen Station, west of Charlotte. Bill Norton, a Duke spokesperson, disputes this report and said the data has been “cherry-picked” to push environmentalists’ agendas.

Zachary Hall, Duke’s director of environmental science, said groundwater on Duke’s properties has been contaminated, but the utility is required to rigorously test water around ash impoundments and its plants’ air emissions. That data, he said, “consistently demonstrated that there’s been no offsite impact.”

This year, North Carolina environmental regulators ordered Duke to excavate all of its remaining ash impoundments in the state, a ruling Duke has contested. But this only regulates ash pits around power plants. More of the material lies beneath towns as structural fill, used under airport runways and as a binding agent in concrete roads. 

Last year, soil containing 40,000 tons of coal ash was accidentally uncovered at a construction site adjacent to Lake Norman High School, where Taylor Wind was a student when she was diagnosed. North Carolina regulators have records of 17 sites around Iredell County where ash was used as fill, and one site in Huntersville. But records for the area only date back to the early 1990s, decades after the two nearby power plants opened.

Smith, the attorney and former regulator, said historic contamination is a problem in North Carolina. “Nobody finds the contamination until the area gets redeveloped for houses,” she said. “You have to find them to clean them up. You have to know about them, and that’s the challenge.”

Norton, the Duke spokesperson, said any unknown historic fill is out of the utility’s purview  — the state and landowners are responsible. Still, some Lake Norman communities have focused on Duke’s coal plants.

In February, I attended an ocular melanoma meeting at Huntersville’s town hall, where Duke addressed the ocular melanoma group and concerned parents for the first time. 

“You’ll hear many stories and local concerns, but directly connecting particular peoples’ illness to a particular substance coming from a particular site is something that requires years and years of study at great expense,” said Hall, Duke’s director of environmental science. “I’m not aware of anybody that has done that.”

But there are some correlations between coal ash and negative health effects, including health and sleep problems in children living near ash impoundments. Many workers who cleaned up the nation’s largest coal ash spill in Kingston, Tennessee in 2008 have gotten sick or died from cancer and other diseases.

At the February meeting, Hall was asked about ash potentially buried nearby without record. “That’s an emerging issue. We’re getting our arms wrapped around it,” he told the group. “Have we done testing around it? No, we have not.”

The cancer cases have caused divisions in the North Carolina towns where many still hold energy industry jobs. Alison Adams, a sociologist at the University of Florida, said she’s seen this play out in Southern communities trying to address diseases and hold companies accountable for pollution. It takes years, if not decades, to see cases through. 

“There’s still a lot of disagreement and it’s very difficult to make the connections,” Adams said. But, she added, “it really is possible for citizens to come together and find a solution and push for people to take responsibility.”

Some landowners don’t want to know if issues exist on their properties. Andrew George, a policy specialist at UNC Chapel Hill who tested well water in Iredell County and across the state with researchers from Virginia Tech, said results showed “patterns of contamination” that deserve more attention, but many people were hesitant to have their wells checked.

“They’re worried it’s going to go public and then it’s going to affect their property value,” he said. 

Huntersville residents say they’ve met people who decided not to move there after reading about ocular melanoma. Some with the means have left Lake Norman’s shores. Now that Taylor Wind’s thyroid cancer has been managed successfully, her family is moving away from the lake.

The pressure by local families has led to small steps forward. Another $100,000 grant to investigate ocular melanoma has been included in the state’s budget, though negotiations to approve the plan have yet to be resolved. Many residents say they hope it will be used for environmental testing. In July, a bill to assemble a cancer cluster research group at UNC Chapel Hill passed North Carolina’s legislature. It was introduced by state Sen. Vicki Sawyer, a Republican representing Iredell County who learned about thyroid cancer in her district when she met Farah-Wind. Sawyer said the state lacks any “bedrock” of “infallible” information that would allow legislators to take specific action.

“Everyone is looking at the coal ash thing,” she said, adding that officials need to be sure before they pursue anything because getting it wrong not only means losing credibility, it could also put lives at risk.

“The real truth of it all is it’s immature to point a finger at anybody,” she said. “I don’t just want to land a punch. I want to win the fight.”

In April, I visited Summer Heath, who is now 25, in Raleigh while she finished a clinical immunotherapy trial at Duke University’s Cancer Institute. Her cancer metastasized two years ago. After a long road, the treatment seemed to be working. A month later, she and her mom announced through joyful tears that stage four tumors in her liver, lungs, spine and breasts had shrunk or completely disappeared. 

“We won the battle right now, but this is never going to be behind us,” Slusarick said. “We’ll always be fighting for testing and answers, because nobody should have to go through this. We need to know what’s causing all this. It’s not right.”

Editor’s note: We are saddened to have to update the story with news that Summer Heath’s cancer has spread, and she is seeking more treatment in Philidelphia.

Top photo: Power lines stretch over the Cowan’s Ford Wildlife Refuge in Huntersville, North Carolina. Credit: Kevin J. Beaty

Kevin Beaty is a photojournalist and reporter for Denverite, Colorado Public Radio’s hyper-local online publication. He grew up in Huntersville, North Carolina. Follow him on Twitter.

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