This past February at a Monticello City Council meeting, resident Caitlin McClain spoke about her father-in-law who died of brain cancer in 2022.
“My father-in-law was a smart, strong, witty man,” McClain said. “He couldn’t talk at all. In fact, the only thing that he could say was ‘I love you’ to his 4-year-old granddaughter, and she was the last person to hear his voice.”
McClain said her father-in-law, a lifelong resident of Monticello, had glioblastoma, a brain cancer that affects up to 5 in 100,000 persons annually and primarily occurs in older men according to the National Library of Medicine. There is no known cure and patients have a median of 14 months to live post-diagnosis.
Since her father-in-law’s death, McClain said she has identified 26 people in Monticello who have been diagnosed with glioblastoma since 2006. Of these people, 24 have died and two are undergoing treatment, she said.
McClain, who works in the health field, collected the information through obituary searches and contacts from residents who have family or friends who’ve died of the cancer.
She said all of the people, except for one, lived in southeast Monticello, south of Lone Beech Road and east of North Market Street. All the cases on her list are in Piatt County, where Monticello is located.
McClain said the data indicates there may be a cancer cluster in Monticello and wondered if tainted water with high nitrate rates might play a role in the cases because nitrates have been linked to higher cancer rates in farming communities.
After her appearance at the council meeting, the city said it had city water tested in the area and it showed a much lower rate of nitrates than average.
McClain said she had contacted federal and state health and environmental officials about the possible cancer cluster. State officials did not respond to CU-CitizenAccess, but they did write a letter to a state senator, in which they said their data did not show an unusually high rate of glioblastoma. However, state data only goes through 2020.
A cancer cluster occurs when there is a larger than expected number of cases of a specific, and often rare, type of cancer in a defined geographic area according to the American Cancer Society. However, health experts caution that the closeness of cancer cases does not necessarily indicate that a cluster has one cause.
Glioblastoma typically only occurs in men in their 60s, per the National Library of Medicine, but three of the cases McClain found were men in their 40s when the cancer was discovered, McClain said.
The American Cancer Society also reported that oftentimes in cancer clusters, people younger than the median age of diagnosis fall ill.
Two of the people with glioblastoma are siblings, McClain said. Though glioblastoma has a genetic basis, the siblings were tested and both did not have the gene linked to the cancer.
The National Cancer Institute publishes an incident rate for brain cancer by county in Illinois. However, the data is suppressed for Piatt County due to insufficient counts and to protect confidentiality. In rural areas, it can be difficult for people to report cancer diagnoses to authorities. See map below.
In an email statement to CU-CitizenAccess, Monticello City Administrator Terry Summers said the city council reviewed research documents provided by McClain after the city council meeting on Feb. 26 this year.
One document was a research paper written by Mary H. Ward and published in 2008. It said “the primary route of human exposure to nitrogen fertilizers is through ingestion of contaminated drinking water.”
More recently, University of Nebraska Medical Center researchers found a link between nitrates used by farmers in corn fields and brain cancer.
Summers said the city council was concerned about high levels of nitrates or nitrites in the drinking water.
“Of the reported potential causes of this cancer, drinking water is the one mentioned possible cause that is directly under our control, as we own and operate our water treatment plant and the water distribution system,” Summers said in the statement.
The city council hired Pace Analytical Services, LLC, a company that provides lab testing services across the U.S. and has three labs in Illinois, to test Monticello water samples on March 8.
On April 22, the city council shared in a meeting that the nitrate level in drinking water was 0.05 mg per liter, well below the maximum allowable limit of 10 mg per liter.
The nitrite levels were almost undetectable, showing less than 0.02 mg per liter for the maximum allowed 1 mg per liter.
But McClain said she’s concerned it could be another contaminant the city council hasn’t tested for.
“It is also possible that there’s some other chemical that I have not identified that’s causing this, and I don’t have a laboratory that I can use, and I am not a scientist, and I do not work for the EPA,” McClain said.
McClain said she has been in contact with federal and state agencies. She said she alerted the Illinois Department of Public Health and the Illinois State Cancer Registry about her findings and asked for an investigation to take place.
But she said they denied her request. Those departments did not respond to requests for information by CU-CitizenAccess.
“I’ve called every department — they’ve passed me along from soil to land, to air to water to water conservation — and they sort of said ‘that’s really concerning, but my department doesn’t handle that,’” McClain said.
In an email sent on Feb. 27 to McClain, Kyle Garner, a cancer epidemiologist for the Illinois State Cancer Registry, said the Illinois Department of Public Health would not be conducting a cancer study in Monticello.
“We don’t know why glioblastoma starts and have very little, if any, information on risk factors for the disease,” Garner said in the email. “We are in a situation where, right now, we don’t have enough information about what causes the disease, or what contributes to it growing … Interventions must have clear evidence to guide them. Without that evidence/guidance, interventions could very well be ineffective, a waste of resources, and worse yet possibly do more harm than good.”
When McClain asked how many cases of glioblastoma would be sufficient cause to open an investigation, she said she was not given a direct answer. Garner could not be reached for comment.
When speaking with Lori Koch, the director of the Illinois State Cancer Registry, McClain said Koch told her clusters “just happen.” After multiple attempts to contact Koch, she could not be reached for comment.
“I told her that this seemed very unusual,” McClain said. “And [Koch] said, ‘well, sometimes these things just happen.’ And I said, ‘Well, cancer clusters don’t just happen.’ And [Koch] said, ‘well, if you had studied epidemiology, you would know that sometimes these things just happen.’”
McClain said Koch also told her that cancers don’t typically cluster. However, the American Cancer Society reported about 1,000 suspected cancer clusters are reported to state health departments every year.
Additionally, the state public health department has only collected glioblastoma case data for Piatt County from 1995 to 2020. In an email statement sent by the department to Renee Martin, the chief of staff for Sen. Sally Turner, the department said that data did not indicate a cancer cluster.
“Our review of Piatt County glioblastoma case counts found 19 cases over 26 years and we did not see any statistically significant elevation during the 26-year period, nor did we see clear evidence of increasing case counts,” the department said in the email statement.
Martin said she has requested a meeting amongst Senator Rose, Senator Turner, the IDPH and McClain to discuss the concern in more depth.
In the meantime, McClain said she felt she had a moral obligation to warn farmers in her community about the danger nitrates pose to a person’s health, so she reached out to farmers she knew in Monticello.
“Most of them had no idea that this was an issue,” McClain said. “Some of them were very alarmed … I don’t think that it’s anyone’s fault, I want to be very clear about that … I just don’t want people to lose their family, the way I lost my father-in-law.”
McClain is continuing to track cases of glioblastoma in Monticello and has provided a form for people to report cases.