Causes of cancer clusters are hard to find

It has taken health investigators two years of research to designate Clyde, Ohio, a cancer cluster.

Their inquiry started soon after Donna and Dave Hisey's 13-year-old daughter was diagnosed with acute myelogenous leukemia.
While the Hiseys awaited the study results, disaster struck again. Their middle child, Tanner, developed lumps on his neck, and in August, he was diagnosed with a totally different form of leukemia, acute lymphoblastic T-cell leukemia. The cluster confirmation came in May, as Tanner underwent chemotherapy.

Now, says Donna Hisey, she checks her youngest child, Siera, every day for signs of illness. The sense of fear is ever-present. The need to know what caused the cancer is overwhelming. It has taken over their lives.

"Any time anybody gets sick, people freak out. Is it minor?" said Hisey, a line worker at the nearby Whirlpool plant. "We just want to know what caused this so nobody else gets sick."

It is not yet known whether The Acreage is a cancer cluster. The state is studying the possibility.

But as families anxiously await results of the state's study here, they're convinced the cluster exists and are deeply hungry to find out what is behind the illnesses in their community.

Could it have been something that leached into the groundwater from the nearby Pratt & Whitney plant decades ago? Something toxic or radioactive in the soil brought in to raise their houses above the marsh? Some solvent illegally dumped and buried? Or the pesticides used in the nearby orange groves and sugar cane fields?

A look at cancer cluster investigations elsewhere in the United States suggests that definitive answers will be difficult - but not impossible - to come by. In the process of searching though, communities like Clyde, Ohio, and The Acreage are learning truths about themselves and their surroundings that can be deeply unsettling.

According to one Acreage resident's unscientific tally, there have been at least eight cases of a brain tumor called glioblastoma multiforme between 2004 and 2009; five cases of a sometimes benign brain tumor called meningioma since 2003; and 17 other assorted brain and nervous system tumors since 1998 - all within the patch of 50,000 rural homes.

The exact case count is hard to say. State health officials are analyzing data from the national cancer registry over 12 years, data that's compiled whenever there is a cancer diagnosis. They will calculate the rate of the cancers they find in the local population, then compare it to national cancer rates. Results may take several weeks.

Meanwhile, state environmental officials are beginning to sample wells, while county leaders analyze soil at two schools.

"It's in the water. I know it's in the water. I really believe it," said Mack Purifoy, 58, who retired to his dream home in The Acreage four years ago with his wife and nephew. The home he paid $400,000 for has a Jacuzzi, an attractive new façade, and well water. And it's sitting empty. He refuses to live there. The former owner, he was told, died of cancer.

A year after moving in, his nephew developed lymphoma. A few months ago, doctors discovered a growth in his brain. They don't know yet if it's a cyst or a tumor, Purifoy said, only that it's growing. He's losing his sense of balance, and having trouble with his vision.

"I drank that water," he says, his voice tinged with anger.

Purifoy is dubious that investigators will ever really identify the source of the illnesses.

Once a cancer cluster is identified, under protocols from the U.S. Centers for Disease Control and Prevention, environmental investigators begin considering possible causes: sources of radiation, pesticides, fungicides, solvents, other chemicals.

Sometimes they find a cause. Often they don't. Frequently, politics trumps science.

In Cameron, Mo., last fall Missouri state officials told residents that the 70 brain cancer cases they identified in a four-county area over 12 years did not represent a cancer cluster.

Several months later, a lawsuit alleged that a leather tannery had been dumping highly dangerous chromium 6, the subject of the film Erin Brockovich, into waste sludge that was spread on farm fields in the region since the 1980s, The Kansas City Star reported. Subsequent sampling of farm fields did find low levels of the hazardous chromium 6, a proven carcinogen.

In eastern Pennsylvania, a single type of rare blood cancer, polycythemia vera, was found in dozens of people. A $5.5 million study is under way, and is considering seven waste coal power plants in the area and seven Superfund sites. At a congressional hearing in March, Democratic lawmakers blasted the Agency for Toxic Substances and Disease Registry, a sister agency to the CDC, for its shoddy review of the cancer cluster.

A report by the congressional committee's staff called the agency's handling of such cases a "clear and present danger" to public health.

"Time and time again ATSDR appears to avoid clearly and directly confronting the most obvious toxic culprits that harm the health of local communities throughout the nation," said the report by the Majority Staff of the Subcommittee on Investigations and Oversight of the Committee on Science and Technology. "Instead, they deny, delay, minimize, trivialize or ignore legitimate concerns and health considerations of local communities and well respected scientists and medical professionals."

In Clyde, Ohio, the investigation is being handled by the state, with input from federal officials, said Robert Indian, chief of comprehensive cancer control for the Ohio Department of Health.

They are broadening their research to study birth defects and miscarriages, he said. There have been 20 children with brain tumors in the area. The nature of the cancers, leukemias and brain tumors, suggests ionizing radiation, Indian said, although everything is being considered.

Not far from Clyde, Waste Management, Inc. operates a deep-well-injection site that has been collecting liquid pesticides and other hazardous chemical waste from throughout the nation. Called Vickery Environmental, the firm injects the waste 3,000 feet into a rock formation deep below farm fields, the company says.

Donna Hisey can't help but wonder if that's the source of the cancers. But she's been told the chemicals have not migrated. She wonders if it's true.

Her best advice to people in The Acreage is to stay involved, ask questions, and keep digging.

Purifoy is asking those questions, but he despairs that he will get an answer in his lifetime.

"We're all going to be dead by the time you all figure out what's going on," he told state environmental leaders at an emotionally charged community meeting on Thursday. "They are going to sweep it under the rug, and a lot of people are going to die, and that's just the way it is."

Hisey said she wants to trust the people who are investigating the Clyde, Ohio, cluster. She needs to be able to trust them. She prays about it often. Ultimately, she said, it's in God's hands.

"I don't know if they are ever going to find out what caused it or not. I would love for them to tell us an answer," Hisey said. "But if they put their best effort into it and they can't find it, then we will have to accept it. But at least we will know they tried."