Dispute over Missouri Cancer Cluster

File photo. iStock/Thinkstock(NEW YORK) — Coldwater Creek in Missouri is not officially the home of a cancer cluster, but Jennifer Smith begs to differ.

At 41, Smith has already been through a host of medical problems. She had endometriosis as a teen, suffered four miscarriages in her 20s and needed to undergo a complete hysterectomy by age 29. Four years later, she was diagnosed with incurable chronic myelogenous leukemia.

Like many others who grew up in North St. Louis County, Mo., Smith suspects her medical bad luck wasn’t luck at all; she thinks it’s the result of growing up along a creek contaminated by radioactive material — the result of uranium processing during World War II. The creek frequently flooded, bringing its contents into her family’s vegetable garden and flooding her basement bedroom.

“It was nothing to me to go out in the garden and pick tomatoes if I played outside,” she said. “I don’t want to be fear-mongering to people, but the word’s got to get out. People have got to know.”

Although the Missouri health department acknowledges that the radioactive waste is real, and the military acknowledges that an environmental clean-up is still under way, officials still say there’s not enough proof to say it’s caused a rise in cancer cases.

The Missouri Department of Health and Senior Services conducted a study of cancer cases in the region from 1996 through 2004 and determined that leukemia and thyroid cancer cases weren’t statistically higher than expected — and cancers that were more prevalent couldn’t be linked to environmental factors. The researchers suggested that “promoting healthy eating, regular physical activity, and tobacco control” would help, according to the study.

“These things are very hard to prove,” said Dr. Reginal Santella, who co-leads the Cancer Epidemiology program at the Herbert Irving Comprehensive Cancer Center with Columbia University and did not work on the Missouri study. “One in three of us is going to get cancer.”

Santella said cancer clusters are hard to prove because there are so many variables involved. What was the environmental carcinogen? How was the individual exposed? How long did it take to cause cancer?

“So few — a fraction of a fraction of a fraction — of these are valid,” she said. “It’s just wastes enormous amounts of money.”

Despite funding from the National Cancer Institute, for instance, the Long Island Breast Cancer Study Project, which was tasked with investigating purportedly elevated cancer cases on Long Island, hasn’t concluded whether it is indeed a cancer cluster, even though researchers have been working since 1993.

A successful lawsuit, the movie Erin Brockovich, and the Environmental Protection Agency’s conclusion that hexavalent chromium causes cancer wasn’t enough to convince the California state epidemiologist that Hinkley, Calif., is the home of a cancer cluster.

For those who lived along Coldwater Creek, the state’s study wasn’t good enough for a group of residents who connected on Facebook.

At the helm of the group is Janelle Wright, 43, who realized in 2011 that a lot of her childhood friends were dying. The music teacher died of leukemia, she recalled. Her grade school crush had thyroid cancer.

“There were four cases of brain cancer in a six-house radius,” Wright said. “That was really weird.”

So she started to make a list. Then one day she came across a Facebook group started by another old neighbor called “Coldwater Creek — Just the Facts.” Its handful of members seemed to have the same hunch Wright had — that something was odd about the cancer cases. She and about 20 other people joined it right away. The group now has more than 9,000 members.

“Those 20 people immediately had a sixth sense that something was not right,” Wright said, remembering how everyone seemed to be fine at their 20th high school reunion just a few years earlier. “How could things go wrong so fast?”

Then someone learned the Army Corps of Engineers was already tasked with cleaning up radioactive waste that had been there since the 1940s connected with the Manhattan Project. Not only was the government removing contaminated soil, it was dredging the creek for contaminated sediment, according to an official military fact sheet about the cleanup.

Wright had no idea, but radioactivity seemed to explain why it took so long for the cancer cases to crop up. Radiation exposure tends to have delayed health effects. It also explained why they were seeing second generation problems, she said.

“They’re killing 50,000 people in Hiroshima with this stuff,” she said. “What do you think it’s going to do with us?”

The list snowballed, but the state’s investigation didn’t provide the results they wanted, in part because it missed many of her peers who moved away but lived in the area for several decades and got cancer, Wright said.

So Wright and her group started their own investigation, finding people who’d moved away using social media and asking them to participate in a survey. Ultimately, they found thousands of cases of cancer.

They found 3,300 instances of cancer in all, including 95 brain cancers and 37 appendix cancers, which are considered rare.

The state health department told ABC News that it isn’t commenting on their survey, however.

Smith, whose house backed up to the creek, said she will be on oral chemotherapy for the rest of her life because of her leukemia. She wasn’t included in the study because she moved away before 1996, and says she hopes state researchers will reconsider their study findings.

“I’m willing to fight the battle,” she said. “It’s worth fighting.”

Copyright 2014 ABC News Radio