Susan Wind had a reason to press state officials about a possible cancer cluster near Lake Norman. Her daughter had the disease.

The lump started small and hid behind her ear. Harmless, the doctor said, nothing to worry about.

So Taylor Wind, then 14, went about her business, attending high school, hanging out with friends and enjoying life in her neighborhood on the shores of Lake Norman in Iredell County.

But even though Taylor’s blood work was consistently normal, the lump never disappeared. In fact, a year ago, when Taylor was 16, the lump had grown larger, and no longer was the innocuous pea behind her ear. 

The state’s Central Cancer Registry statistics show that for the past 22 years Iredell County has reported statistically higher incidences of thyroid cancer than the state average — even double or three times greater.  But only this week, after Policy Watch obtained a document that previously had not been made public, was it revealed that in May state and county health officials designated two zip codes near Lake Norman — 28115 and 28117 — as suspected cancer clusters. Taylor and her family live in 28117.

Now the state Department of Health and Human Services, the Central Cancer Registry and the Iredell County Department of Public Health are delving deeper into the data to determine who is developing thyroid cancer and where they live. Once the cancer registry notified the state health department of the anomaly, said Jessica Rinksy of the Occupational and Environmental Epidemiology Branch, it began an investigation. The public had not been notified of the possible cancer cluster, Rinsky said, because the investigation is in its early stages. The cancer registry could not be reached to explain why it had not flagged the thyroid cancer trend until now.

One reason for the sudden interest could be Taylor’s mother, Susan Wind. She has stepped in where the state legislature, federal government and even public relations teams have failed. She has gathered stories of people with thyroid cancer and passed those along to scientists and state officials. And because there is insufficient funding for thyroid cancer research or for state agencies to routinely conduct this work, Wind decided to raise her own funds for a study. Through social media and fundraising events, she collected about $110,000 — enough to hire an independent scientist from Duke University to sample the air, drinking water, even house dust to determine if the uptick in thyroid cancers is caused by environmental exposures. 

“Through the years, there’s been a lot of cancer here,” said Susan, whose family has lived on Lake Norman since 2012. “It’s been in the back of my mind.”

If the state does determine these zip codes constitute a cancer cluster, it would be the first one officially identified in North Carolina. “Proving cancer clusters is quite challenging,” said Rinsky, especially for relatively common cancers such as those involving the thyroid.

Thyroid cancer usually strikes women in their 40s and 50s, or occasionally, men in their 60s. Risk factors include genetics, lifestyle and environmental factors, including exposures to fluorinated compounds in flame retardants and radiation. But at least three teenage girls in the affected zip codes have been diagnosed with thyroid cancer. Until now, in these areas in southwest-central North Carolina, thyroid cancer has not been considered a disease of the young.

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A year ago, Taylor, by then 16, had noticed the lump had grown. After seven weeks’ of testing at Wake Forest Baptist Hospital, she sat in a specialist’s office on a summer’s day in June, waiting for the results. The doctor entered the room. Cancer. Not just a single tumor, but more than a dozen throughout her neck.

“I was more shocked than anything because I did not feel like I had cancer,” Taylor said. “I just thought I had something that was not as big of a deal.”

Soon Taylor underwent an eight-hour surgery, which entailed a full neck resection to excise all of the tumors and to remove her thyroid and parathyroid glands. Taylor was lucky. The cancer had not spread beyond her neck.

Taylor continued treatment, which included a low-iodine diet and doses of radiation. Because she was temporarily radioactive, Taylor had to be quarantined for several days in a separate room and fed meals on paper plates and using plastic utensils. A high school senior, she attended classes online.

“I asked, ‘How did this happen?’” Susan recalled. “The doctors told me they were seeing more cases of thyroid cancer, which are most likely environmentally linked. The doctors said, ‘We’re seeing so many cases coming out of your area.’”

[Tweet ” Why has it taken so long to figure something out?”]

Susan called the Central Cancer Registry, but it had cancer data only through 2014. (It has since been updated to 2016, although those figures would not include Taylor’s diagnosis.) The problem with the Central Cancer Registry is that not all cases are reported. While oncologists obviously would notify the registry, other specialists might not.

Meanwhile Susan, who works as a cybercrime consultant, took to social media to find other people with thyroid cancers or disorders that the registry might have missed. “The list grew and it was all over the zip code,” she said. “It was not just on my street.”

Macenzie Myers, 21, lived on Lake Norman for 10 years. She was diagnosed with thyroid cancer three years ago, as a college freshman. She said her thyroid was so larger that her neck was swollen to the extent “you could not see my left collarbone.” Surgeons removed her thyroid and 10 to 12 lymph nodes. Like Taylor, she tested positive for a genetic mutation, known as BRAF for short, that is linked to several cancers, including those of the thyroid. It is unclear what causes that mutation, although environmental exposures are among the possibilities.

“It’s frustrating that more people my age are going through this,” said Myers, who now lives in Salisbury. “I’m not the only one in the area. Why has it taken so long to figure something out?”

[Tweet ” I was sad to live among all this cancer. “]

Earlier this month, when the state health department validated her suspicions, Susan said, “It was a big day. I was in tears. It was a mixed feeling. I was sad to live among all this cancer. But all the work was accurate. Now, what is the state going to do about it?”

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At 50 square miles, Lake Norman is the largest man-made inland water body in North Carolina. It was built in the 1960s by Duke Power, now Duke Energy. The Marshall Steam Station, a coal-fired power plant, lies on the west-central side of the lake, directly across from the city of Mooresville. On the southern end, Duke Energy operates the McGuire Nuclear Power Plant.

Although it would be premature to assign any cause to the suspected thyroid cancer cluster, the fact is, Lake Norman is polluted. It is fed by the Catawba River, which is contaminated by runoff from poultry and cattle farms. Much of the lake itself, from Lyle Creek on the northern end, to the dam, near the south, is under a fish consumption advisory for PCB contamination, according to state environmental records. The manufacture of PCBs is banned in the United States, but the compounds persists in the environment worldwide.

Groundwater monitoring at the Marshall plant indicated three of 63 samples tested high for radium; one of those samples was more than twice the drinking water standard.  (The Catawba Riverkeepers sample Lake Norman and the river, but primarily for bacteria.)

[Tweet ” I am confident that I will be okay.”]

Heather Stapleton, an associate professor at Duke University and chairwoman of its Ecotoxicology & Environmental Health Program, learned of the spike in thyroid cancer cases from an endocrinologist at Wake Forest Baptist Hospital whom she knew from Duke University. Once the statistics were confirmed, Stapleton sampled air, soil, house dust and drinking water. Several utilities serve the Lake Norman neighborhoods, with some drawing from groundwater in aquifers and others from the lake itself. Other homes are on private drinking water wells. (The Wind family installed a reverse osmosis system at their home, as did more than 80 other neighbors.)

Stapleton is also interested in studying other areas bordering Lake Norman, including communities in Cabarrus and Rowan counties. “What are the hot spots?” she said.

Stapleton has asked the cancer registry to also analyze the average age at diagnosis. “Thyroid cancer rates are growing nationwide, not just in North Carolina,” she said. “There’s not a lot of research. We want to know if it’s affected a younger population. I’m hoping we can provide answers and make recommendations on how to reduce exposures.”

Taylor graduated from high school earlier this month, summa cum laude and ahead of schedule. Today, she and her mother are traveling to Orlando, where she’ll attend the University of Central Florida. She hopes to become a nurse anesthetist.

Nonetheless, Taylor will have to be monitored for several years. “It is a little nerve-racking knowing I am not 100 percent in the clear,”  she said. “But at the same time, I do everything the doctors tell me to do, so I am confident that I will be okay.”

“Her whole life has changed,” Susan said. “But mentally, she’s fine. She is now able to say, ‘I had cancer.'”