CLINTON — People are getting cancer more in this part of Central Illinois than almost anywhere else in the state — and no one knows exactly why.
DeWitt and Macon counties have the second- and third-highest rates of cancer in Illinois, topped only by rural Franklin County in the southern part of the state, according to the most recent available data from the National Cancer Institute. Nearby counties of Sangamon, Cass, Logan, Scott, Morgan and Christian ranked in the top 20.
Out of every 100,000 people across the country, 441 are diagnosed with cancer, according to the national average. In each of the Central Illinois counties, the rate is higher than 500. In DeWitt and Macon counties, it’s over 540.
Why here? Doctors and healthcare leaders stress that there is no clear-cut explanation, pointing instead to an amalgam of contributing factors.
Health statistics tell one story. But they don't answer crucial questions for people like Susan Bishop, who was diagnosed with the disease in May 2009 and underwent a year of treatment.
"You worry, 'Did I contribute to this?’” said Bishop, of Decatur. “‘Was stress part of this? Was how I ate part of this?’"
Higher cancer rates in Central Illinois are not a recent trend, according to the state cancer registry, which includes data back to the 1990s.
"It's been a concern for a long time," said Dr. James Wade, medical oncologist and founder of Cancer Care Specialists of Illinois, a network of cancer-related medical services and physicians with 20 downstate locations. "I've been in Decatur for 34 years, and this question has always been in the background."
No clear answers
Cancer causes some cells to multiply without stopping and spread into surrounding tissue. It can start almost anywhere in the body, and there are more than 100 types, according to the National Cancer Institute.
Sometimes, a high number of cases in one area can be explained. For instance, women who painted watch dials in the 20th century developed bone cancer because of radium in paint. The 2000 film "Erin Brockovich" drew attention to the true story of Hinkley, California, where residents developed high rates of cancer because of a harmful chemical in groundwater.
There is no such obvious explanation in Central Illinois.
"Patients have asked about the environment, particularly being from an industrial base," Wade said. "But I think if that really was a cause, there'd be a much greater discrepancy between our county and our surrounding counties."
Any combination of hard-to-track genetic, environmental and behavioral factors could be at work, said Kyle Garner, a cancer epidemiologist for the Illinois Department of Public Health. The age and income level of the population, their access to medical care and lifestyle factors such as smoking and diet all could play a role.
Drill down into specific types of cancer and it gets even harder to find a common thread.
"In terms of what is it specifically that's driving the differences in these particular cancers, it could be a host of different things," Garner said.
It's also difficult to ascribe any correlation between cancer rates and the region’s heavily agricultural economy. Just look at Champaign County, another agriculture-rich area to the east of DeWitt and Macon counties. It has some of the lowest cancer incidence rates in the state, on par with the collar counties near Chicago.
Wade pointed to stark differences in the population of Champaign County, which includes the University of Illinois.
"There's a higher median income, higher white-collar versus blue-collar employment, so there may be lower smoking rates,” he said. “I think that there may be behavioral differences on average.”
Age likely plays a role. While the causes of cancer can develop over time throughout life, most cases are detected after the age of 40, according to National Cancer Institute Data.
In Macon, Christian and DeWitt counties, about 19 percent are over 65, roughly 5 points higher than the state. By comparison, that age group makes up 11 percent of the population in Champaign County, according to Census data.
"If you have more folks that are older, it'll be reflected in the higher statistics," Garner said. "Even though this data is somewhat age-adjusted, they don't capture it all that well."
Data also show these counties profile as less healthy in general than the state overall, which officials and doctors say is an important indicator. Research shows cancer is more common in people with other chronic health problems, like obesity, poor nutrition, sexually transmitted infections, heart disease and diabetes.
The Robert Wood Johnson Foundation, a philanthropy group that studies health in the United States, ranks Macon County 88th in overall health of Illinois' 102 counties, and DeWitt is 77th. Sangamon, Logan and Christian counties all place in the bottom 50 on the list that factors in metrics like prevalence of smokers, obesity rates, access to healthy foods and substance abuse.
Champaign County ranks 41st. Adjacent Piatt County, which shares its health department with DeWitt County, placed 11th in the most recent rankings.
"It's not reflective of the quality of hospitals or anything like that,” said David Remmert, public health administrator of the DeWitt-Piatt Health Department. “It's reflective of the socioeconomic status of the population." Social and economic factors, like income, education level, violent crime rates, obesity and lifestyle, are the best predictors of health outcome as a whole, he said.
State survey data taken in 2012 found higher rates of smoking and obesity in Central Illinois. Just over a quarter respondents in Sangamon County reported being obese, compared to at least 35 percent in DeWitt, Christian and Macon. The state average is 31 percent.
It's numbers like that that are cause for concern among public health and medical professionals, who in recent years have focused more of their attention examining the lifestyle factors that can lead to severe, acute health problems later in life.
"You'll hear (public health professionals) talk a lot about 'social determinants of health,'" said Julie Brilley, chief planning and development officer at Crossing Healthcare, a federally qualified health clinic in Decatur. "That's anything from, 'Do you have access to go to the doctor? Do you have access to fresh fruits and vegetables? What's going on at home, are you living in a rental that's not being well taken care of? Do you have a (negligent) landlord?'"
Data like health rankings and smoking rates paint a broad, unsettling picture. But health leaders say they’re just pieces of the puzzle to understanding cancer. Every individual is different.
"The one thing you cannot do is you can't take the results of your analysis of counties (and claim) an individual that lives in 'County A' is more likely to get cancer than 'County B,' because you're not talking about individuals," Garner said.
Bishop, the Decatur woman who was diagnosed with cancer nine years ago, eventually learned that her breast cancer had little or nothing to do with environmental factors. Doctors ordered an analysis of her DNA and found a known gene mutation that can lead to aggressive, rapid-developing breast cancer.
That revelation led family members to take a genetic test. Bishop's sister, Andrea Sheffer, elected to have preventative surgery to mitigate the risk of ever developing breast cancer after her results came back positive.
Sheffer is a nurse, something she said informed her decision, and her story serves as an example of how education and know-how can affect both cancer incidence and especially mortality rates.
Researchers have investigated for years whether living farther away from hospitals and health care facilities influences outcomes in their health. Rural counties like DeWitt, which has one hospital, rank relatively low in Robert Wood Johnson's county health rankings. But it still ranked higher than Macon County, which has two hospitals and primary care for many low-income people provided by Crossing Healthcare.
Rural residents often need to drive longer distances to make doctors' appointments, and sometimes even farther away to see specialists who are often tied to major hospitals and medical campuses. Those could be in a population center miles or hours away.
Christian County Public Health Administrator Nancy Martin said access to health care is an ongoing issue there. "We do have a lot of transportation issues, because we're rural," she said. "People have issues getting around to the services that they need."
It’s not clear whether having access to more doctors and hospitals keeps people from getting cancer. But health officials say it could mean that those diagnosed with cancer live longer as a result.
The reason? If it’s hard to go to the doctor, people may put it off until they know something is wrong. By then, it may be too late.
"Unfortunately, sometimes we'll see people who don't have good access to primary care ... often don't show up until they have symptoms or more advanced cancers," said said Dr. Renata Moore, a radiation oncologist who sees patients at both HSHS St. Mary's Cancer Care Center and the DMH Cancer Care Institute.
Malory Alvarez, who is heavily involved with the DeWitt County Relay for Life that raises money for the American Cancer Society, became passionate about fundraising for cancer research and awareness after her sister was diagnosed with colon cancer five years ago.
At 30, Andrea Staley was unusually young to develop the disease, Alvarez said. Staley, of Washington, was diagnosed after visiting the doctor with abdominal pain. She died in April after a five-year battle with the disease.
Alvarez plans to stay involved with the American Cancer Society to honor her sister’s memory and fight for others. She encourages people to take advantage of early cancer screenings whenever possible, and not to put off visiting a doctor.
“I know me and a lot of people in my family, we’re not ones to go to the doctor for a regular checkup,” said Alvarez, who lives in Bloomington but grew up in Clinton and returns often. “We only go when we really have to.
“I think that’s just a mindset of a lot of people in the area: ‘I don’t want to go to the doctor until I know something’s broken or I can’t take the pain anymore.’”
In DeWitt County, Warner Hospital & Health Services CEO Paul Skowron said the patient population has historically had less access to preventative screenings such as for lung cancer.
"It's a population that is sometimes challenged to have the transportation to get to higher levels of care," he said. "We have to educate the public that those screenings are available (at Warner Hospital, which is in Clinton), sometimes they don't know that, so that they can have the care close to home."
About 15 years ago, Wade said, Macon County ranked low in the percentage of people getting screened for colorectal cancer. In response, the American Cancer Society and Decatur Memorial Hospital put together a major initiative for colon cancer screening, he said. More people got screened, and colon cancer was detected earlier.
Medical research and technological advances continue to build. Bishop said one pillar of support during her treatment for cancer was her sister-in-law, who underwent a similar experience six years prior.
"What I found was in just six years things had changed," she said. "Our experiences were somewhat similar, but different — medicine had improved.”
To know that people are having an easier time going through the process than the generation before, Bishop said, "That's all very encouraging."