Mapping cancer cases in a small town (Part 2)
All this week we're bringing you a special series on cancer and the environment.
Cancer is a scary enough word, and cancer cluster can sound even scarier. That term describes a place where more people have cancer than you’d expect to find in the rest of the population. But finding out if a cluster really exists and then getting something done about it is hard, really hard.
Claire Schlaff doesn’t know if there’s a cancer cluster in her small resort community around White Lake, Michigan on the western side of the state. She says she just wanted to know more about what might have caused her son, Doug to get cancer and die three years ago.
“He went to two major medical facilities and was even in a clinical trial. They were focused on treatment. They weren’t about doing research into what causes Ewing’s Sarcoma.”
Claire’s daughter-in-law Polly was also looking for answers to what had caused the disease. She’s Doug’s widow and the mother of his three boys.
“He was diagnosed when he was 33 and he passed away when he was 35. We were high school sweethearts. He was a high school counselor; he was a high school basketball coach. He was an athlete.”
Polly started a Facebook group called Cancer in White Lake to gather stories of people around the lake affected by cancer. She and Claire had a hunch there was more cancer around White Lake than in other places. They collected more than a hundred stories from people with lots of different cancers. Claire and Polly thought it might have something to do with past pollution. This is Claire again:
“In 1985 we were listed as one of the Great Lakes Areas of Concern because of contamination from Hooker chemical, the tannery, DuPont and maybe some others.”
White Lake has been cleaned up. It’s expected to come off the list of polluted places this year. The local health department doesn’t have any data to show there’s more cancer around White Lake than anyplace else.
Claire and Polly and some dedicated volunteers want to get the health department more data. The state keeps track of cancer rates by county, but not by town. And there are lots of types of cancers they don’t keep track of.
So Claire and Polly turned their Facebook group into something else.
“It’s a voluntary, self-reporting mapping project.”
They’re trying to map all the people in their community who’ve had cancer in hope of getting their health department interested in looking into this. They’re finding, then calling and surveying about 1,000 people.
Terry Nordbrock runs the nonprofit National Disease Cluster Alliance. She says regular people are not usually successful in discovering a cancer cluster.
“There’s hundreds and hundreds of times where people have a concern-they’re observing harmful effects in their community and they can’t get anyone to listen to them. So that is actually the more common outcome: massive frustration for all involved.”
Terry Nordbrock says cancer clusters just don’t get enough attention from the government. She says that’s why people like Claire and Polly Schlaff often have to do the work themselves if they want to see it done.
“Communities deserve to have confidence that their concerns will be adequately addressed. We’re not there yet.”
Claire Schlaff says she doesn’t expect answers about what caused her son’s cancer.
“I don’t think we’ll ever figure out what caused Doug’s cancer. I feel like we might figure out why somebody got cancer.”
They do hope their work is useful and can provide answers for somebody, some day.
Our cancer and environment series continues tomorrow. We’ll hear about a confirmed cancer cluster in St. Clair County, where a number of young children have been diagnosed with a rare kidney cancer.