Michelle Ong has lived in the Lake Norman area for more than two decades, but it wasn’t until she traveled to an international medical conference hundreds of miles away that she learned about a suspected cancer cluster in her own backyard.
“I was stunned because I’m in Boston hearing about this, and no one in Lake Norman is talking about it,” said Ong, an internist who is board-certified in integrative medicine. “I think people are ignoring it, and doctors aren’t trained in it. But we’re getting there.”
Elected officials from Iredell County have criticized the state’s delay in analyzing data that ultimately revealed unusually high rates of thyroid cancer in the southern part of the county. Now, medical professionals are joining in the criticism because the state never informed them about the cancer cases, they say.
“There were no reports from the state,” said Ong.
Physician Joel H. Sugarman, owner of Lake Norman Dermatology in Cornelius, agreed. Instead of hearing about the suspected cluster from the state or medical community, he heard about it from a patient.
Doctors are required by law to report new cancer diagnoses to the N.C. Central Cancer Registry within six months. But the registry, a division of the N.C. Department of Health and Human Services, is two years behind in compiling and releasing that data. It also didn’t analyze data for years that pointed to Iredell’s abnormally high rates of thyroid cancer.
Since 1995, Mooresville ZIP codes 28117 and 28115 have experienced up to three times the average number of thyroid cancer cases compared to all of North Carolina.
Sugarman calls it “incomprehensible” that the data wasn’t analyzed until Mooresville resident Susan Wind demanded answers after her 16-year-old daughter, Taylor, was diagnosed with thyroid cancer.
“Why am I reporting these numbers to the state when no one is really looking at them?” said Sugarman, who added that the reporting process can be cumbersome – and expensive – for doctors.
“We have separate computer programs for reporting, and I pay nurses to input the data. We put all these resources toward getting this data to the state, and I have to rely on a patient to tell me about a 300 percent incidence rate of thyroid cancer here? That’s absolutely mind-blowing.”
Ong and Mooresville Mayor Miles Atkins are working to organize a meeting with medical professionals and local government leaders.
“(Doctors) at least need to be educated and pull together the data,” Ong said. “Everybody needs to take a deep breath and get the numbers ASAP. Shame on us for not doing it, and shame on the state for being behind.”
Wind said she shouldn’t have had to work so hard to find a physician willing to act on her concerns about Taylor’s health. She said people now contact her weekly, asking for local physician recommendations.
“They want to know which doctors are taking this seriously,” Wind said. “Cancer clusters are rare, but our numbers meet the criteria for a cluster on the Centers for Disease Control website. Even knowing this, some local doctors are telling their patients that ‘cancer is everywhere; there’s nothing to worry about and there’s no need to screen.’”
To screen – or not to screen
N.C. Sen. Vickie Sawyer, whose district includes the affected areas, recently ordered thyroid ultrasounds for her two daughters, ages 12 and 16.
The results revealed abnormalities on both girls’ thyroids, Sawyer said.
Such results are not unusual and are one reason ultrasound thyroid screenings on asymptomatic people are controversial and not recommended by the American Cancer Society (ACS) and the U.S. Preventative Services Task Force (USPSTF).
“Screening for thyroid cancer in a healthy population is not supported by scientific evidence, said Susan Gapstur, senior vice president for behavioral and epidemiology research at ACS.
However, Gapstur and USPSTF Chairwoman Sue Curry said the organizations’ recommendations are based on the general population – not on areas with suspected cancer clusters.
“The task force does not make individualized recommendations based on geographic locations,” said Curry. “We certainly encourage anyone who has concerns about their risk of thyroid cancer to discuss the benefits and harms of screening with their doctor.”
Taylor Wind’s endocrinologist and thyroid specialist, Brittany Bohinc Henderson, said ultrasounds are appropriate screening tools “when there is a proposed thyroid cancer cluster or known environmental risk.”
Henderson – who Susan Wind calls “The Good Doctor” – has a special certification based on what is considered the highest level of thyroid training in endocrinology. Henderson, former medical director of the thyroid tumor board at Duke University Hospital, is medical director of the thyroid clinics at the Comprehensive Cancer Center at Wake Forest Baptist Medical Center, a published author and owner/physician at the Charleston Thyroid Center, opening next month in Mount Pleasant, South Carolina.
While health organizations don’t recommend ultrasound scans for asymptomatic people, Iredell Health System’s Eva Imperial – a family practice specialist with Iredell Primary Care for Women – noted that most people with thyroid cancer do not have symptoms.
Others “may experience thyroid tenderness or enlargement, nodules, fatigue, heart palpitations or unintentional weight changes,” she added.
Though such symptoms don’t necessarily point to thyroid cancer, they should be discussed with a healthcare provider, Imperial said.
Rocco Tritico, a radiologist with Iredell Radiology Associates, said ultrasounds are “100 percent safe.”
Added Imperial: “There is no radiation risk, and ultrasound is a simple, non-invasive test that requires no prep, IV or sedation.”
However, she said, “As with any lab or test, there is always a risk and benefit.”
The primary risk associated with ultrasounds is discovering something that could lead to additional procedures, biopsies or surgeries, only to later find out that everything was benign or normal.
A simple way to avoid that, Henderson suggested, is to consult with an expert.
“There are endocrinologists that specialize in thyroid issues and are proficient in the use of ultrasound (and) identifying nodules that do or do not need to be biopsied,” she said.
She noted that there are two schools of thought on early detection of thyroid cancer. Some doctors think it’s crucial, while “others argue that finding a clinically insignificant micro-cancer within the thyroid may prompt unnecessary surgery and lifelong thyroid replacement medicine in someone where the small thyroid cancer would never have grown or spread,” and it might have been better to never have even known about it.
However, said Henderson, “Medical diagnostic technology has not progressed to the point where we can tell which thyroid cancers will behave more aggressively and which will remain indolent. Even micro-cancers can spread to lymph nodes and beyond. Therefore, it is reasonable to undergo screening ultrasound if you have one or more risk factors for thyroid cancer.”
Risk factors, in addition to living in an area of a suspected cancer cluster and/or around a known environmental risk, include:
» Personal history of radiation exposure for another cancer (particularly at a young age).
» A family history of thyroid cancer.
» A family history of Hashimoto's Disease.
» Discovery of a lump in the neck.
Doctors recommend self neck checks and thyroid exams at annual doctor visits.
Henderson said that even if a nodule is discovered, most are not cause for alarm. Nodules are “extremely common,” except in children, and about 95 percent are benign, she added.
Thyroid cancer –the fastest-growing cancer in women – has a low mortality rate, and some people can live with it for years.
“Most thyroid cancers are treatable, and the survival rate is excellent (near 100 percent) when diagnosed and treated early,” Imperial said.
If a nodule is discovered during a self-exam or annual evaluation, Imperial added, an ultrasound “can help determine the size and other characteristics of the thyroid that will be helpful in the evaluation of the nodule.”
While the public waits for results from Wind’s commissioned Duke University study, which is looking into possible environmental factors that could be contributing to the elevated thyroid cancer cases, Iredell Health System said it will keep the public informed about future thyroid ultrasound screenings.
“Iredell Health System believes in being a good community partner,” said Chief Operating Officer John Green. “Our goal is to work to answer the needs and requests of those we serve.”
Sawyer said she is relieved to have her daughters’ ultrasound results as a “baseline” to which she can compare annual thyroid evaluations in the future.
As a senator, she said she plans to push for answers as to “why our area has more thyroid cancer than anywhere in North Carolina.”
Citing the length of time it takes the state to compile and report new cancer diagnoses, she said she wants to take a closer look at the state’s technology and manpower.
Also on her to-do list: finding out if insurance coverage changes for people living in areas with a suspected cancer cluster. Most insurance doesn’t cover the cost of preventative ultrasound screenings.
“It just makes good business sense,” said Sawyer. “Wouldn’t you rather catch it early than have to treat it later?”
Instructions for doing a self-exam of the thyroid from Brittany Henderson, medical director of the thyroid clinics at the Comprehensive Cancer Center at Wake Forest Baptist Medical Center:
Feel the "V" shaped area right above the breast bone at the base of the neck. Place fingers on either side of the "V," and get a glass of water and a mirror. When swallowing the water, look and feel for a lump, or if you notice that one side protrudes more than the other. If so, tell a physician, who can order a screening ultrasound if needed. If the screening is positive, seek a thyroid specialist.