Cancer in Iowa: What you need to know about Iowa’s soaring cancer rates

By Brittney J. Miller, The Gazette

At 7 months old, Devyn Kaas started to get fevers. A doctor reassured her parents — Scott and Brooke — that it was likely due to teething. But they knew something was seriously wrong when she couldn’t move one of her legs without pain.

They took Devyn to another doctor, who saw her pale skin and immediately ordered blood tests and X-rays. After the appointment, the family hadn’t even been home for 15 minutes when they got the call: They needed to bring Devyn to the 11th floor of the University of Iowa Stead Family Children’s Hospital — the pediatric oncology unit.

Staff Physician Dr. Mike Halyko listens to Devyn Kaas’, age 14 months, heartbeat during an appointment at the Stead Family Children’s Hospital in Iowa City, Iowa on Friday, March 1, 2024. (Nick Rohlman/The Gazette)

It was there that doctors told the family that Devyn had acute myeloid leukemia, an aggressive cancer of the blood and bone marrow.

Over the next 6 months, Devyn spent 153 days in the hospital as she received five rounds of chemotherapy, enduring needle changes, blood infusions and a weakened immune system. In January, she battled an infection that nearly took her life.

“It’s unbelievably difficult,” said father Scott Kaas of Cedar Rapids, a systems engineer for a networking company. “We’re sitting there torturing our kid day after day after day to cure them. And it’s just — it’s just awful.”

Devyn was one of 20,800 Iowans the Iowa Cancer Registry estimated would be diagnosed with cancer last year. This year, another 21,000 new cases may join the crowd — and 6,100 may die from the disease.

Brooke Kaas sits with her daughter, Devyn Kaas, as they await blood test results during an appointment at the Stead Family Children’s Hospital in Iowa City, Iowa on Friday, March 1, 2024. (Nick Rohlman/The Gazette)

Iowa currently has the second-highest cancer rate in the country for the second year in a row, according to the 2024 “Cancer in Iowa” report, and has the fastest growing rate of new cancers. Two in five Iowa residents will be diagnosed with cancer. Four types of cancers are disproportionately common in the state, University of Iowa researchers have found. But the state is still digging to uncover why.

In this series, The Gazette will explore what we know — and don’t know — about Iowa’s cancer rates. We’ll probe the role agriculture may play, and we’ll examine how cancer clusters are investigated in the state. And, amid the dire diagnoses, we’ll highlight efforts that Iowans — from lawmakers to individuals — are making to combat the deadly disease.

What cancers are most common?

Among its Midwestern cohort, Iowa is the clear leader in rates of new cancer cases, said Mary Charlton, University of Iowa epidemiology professor and director of the Iowa Cancer Registry.

Minnesota and Nebraska — the states with the next-highest rates — both face increasing incidence of cancer but at lower numbers than Iowa. Cancer rates are declining in Wisconsin, Illinois, Kansas and Missouri.

Charlton and her team of UI researchers analyzed which cancers are popping up more frequently in Iowa compared to the rest of the country.

They found that the state has one of the fastest growing rates of breast cancer nationwide, even though mammogram rates aren’t increasing. Most of the cases are early stage. They’re most frequently found in urban areas, including around Des Moines, Cedar Rapids and Iowa City.

Breast cancer is estimated to comprise the biggest portion of overall new cancer cases in Iowa this year. Researchers are projecting around 2,900 new cases, which would make up 14 percent of all new cancer cases, according to the 2024 “Cancer in Iowa” report. Just under 400 residents are expected to die from the disease this year. Breast cancer survivors make up 22 percent of all cancer survivors in Iowa.

Prostate cancer is also prevalent in the state, researchers have found, particularly in the northwest and western regions of the state.

Mary Charlton, professor of epidemiology and director of the Iowa Cancer Registry, kicks off the press conference at the University of Iowa during the “Cancer in Iowa” report press conference on Monday, Feb. 19, 2024, in Cedar Rapids, Iowa. (Geoff Stellfox/The Gazette)

Estimates say 2,850 new cases of prostate cancer may arise in Iowa this year alone — a count trailing just behind breast cancer. Around 18 percent of Iowa’s cancer survivors battled with prostate cancer.

“Both breast cancer and prostate cancer are increasing in the country,” Charlton said. “They’re just increasing faster and at a greater rate in Iowa.”

Lung cancer rates are declining across the U.S. as a whole. But in Iowa, they’re declining much slower. In fact, Iowa has shown the least progress of all states in reducing lung cancer incidence over the last few decades, Charlton said.

This year, 2,700 new cases of lung cancer are expected in Iowa. It may be the most fatal cancer in the state. An estimated 23 percent of those who die from cancer this year were diagnosed with lung cancer. The cancer is more common in southern Iowa.

Melanoma — the most serious skin cancer — rounds out the top four cancers that set Iowa apart from national cancer rates.

The state has one of the fastest-increasing rates of melanoma in the country. It is estimated to comprise about 7 percent of the new cancer cases this year. The cancer is more common in northern Iowa, UI researchers have found.

“Once you subtract those four (cancers) from our rates, then we start to look a lot more like the rest of the country,” Charlton said.

Why is Iowa rife with cancers?

Iowa is one of a handful of states where cancer incidence rates are rising. The question is: Why?

That’s what the Iowa Cancer Consortium is trying to figure out, said Charlton, its president.

The nonprofit leads the Iowa Cancer Plan, an evidence-based guide to help Iowa communities prevent, detect and treat cancer. It also gathers around 650 researchers, public officials and other stakeholders together to work toward reducing cancer burdens statewide. Different work groups focus on topics like cancer-related policies, screening and prevention, and rural cancer.

“Our superpower is that we are able to build relationships within the coalition that then are ready for activity and engagement when it’s time,” said Kelly Sittig, executive director of the Iowa Cancer Consortium. “The coalition exists so that the people and organizations who are members can do their work bigger, better and more collaboratively.”

The Iowa Cancer Plan includes a focus on risk factors for cancer. Some — like age and genetics — are unpreventable. But others revolve around lifestyle and behavior choices. An estimated four out of every 10 cancer cases are associated with preventable risk factors, according to the American Association for Cancer Research.

Smoking and tobacco use, for instance, account for the vast majority of lung cancer cases in Iowa, Charlton said. Chemicals in cigarette smoke and tobacco smoke weaken the body’s immune system and damage cells, allowing cancer cells to grow unchecked. At least a quarter of Iowa adults currently use tobacco products, and more than a fifth of high school students currently smoke cigarettes or use vaping devices.

Physical activity levels and daily diets also play roles in cancer risk. The Centers for Disease Control and Prevention associate at least 13 cancers — 40 percent of all cancers diagnosed in the U.S. each year — with overweight and obesity. Just under half of Iowans achieve the recommended levels of physical activity, according to the Iowa Cancer Plan. About every one in 13 Iowans faces food insecurity, which is a barrier to accessing healthy and nutritious food.

Alcohol consumption is another cancer risk factor that’s disproportionately high in Iowa, as the Iowa Cancer Registry focused on in its 2024 “Cancer in Iowa” Report. The human body breaks down alcohol into a chemical that damages DNA, allowing cancers to grow. Alcohol can also manipulate hormones and mouth and throat cells, which increase cancer risks.

Iowa has the fourth-highest incidence of alcohol-related cancers in the country — and the highest in the Midwest — which include cancers like oral cavity, pharynx, larynx, colorectal, liver and breast cancer. The state’s adult binge drinking rate surpasses that of every other Midwestern state and is fourth-highest in the country.

“It’s hard to say that alcohol in and of itself causes very many cancers, but it interacts with other risk factors and it certainly increases your risk for cancer,” Charlton said. “It’s one that breast cancer is associated with … and we know that that’s a big area of concern in Iowa.”

Other cancer risk factors include excessive ultraviolet radiation from the sun or tanning beds, which can damage skin cells and lead to skin cancer. Untreated hepatitis C, a liver infection with no vaccine, can inflame the liver and eventually lead to cancer. Receiving certain vaccines, like those for HPV and hepatitis B, can decrease cancer risks.

Iowa’s mortality rate from cancer is only slightly above the national average — a silver lining among the state’s otherwise grimly high rankings. But treating and surviving cancer still leaves lifelong scars, ailments and trauma for survivors and their loved ones.

“People are still going through really awful treatments and really devastating times in their life with cancer,” Charlton said. “We’re Iowa. We ought to be able to address this better. We take care of each other.”

Can our environment contribute to cancer risk?

When Maria Steele couldn’t shake a cough and a heaviness in her chest in December 2019, she feared it was her heart.

“I used to work in the ER as a nurse,” said Steele, 66, of Adel. “A woman comes in with chest pain, you always think heart or stroke. Those are the biggies.”

But after multiple tests, doctors gave Steele — a trim, non-smoking former athlete — a different diagnosis: They told her she had stage 3 lung cancer that had metastasized to her brain and bones.

Shocked, Steele tested her home for radon, a radioactive, odorless and invisible gas that escapes from mineral deposits that glaciers left behind in Iowa soil. She found levels double the rate at which the EPA recommends remediation.

“I had heard of radon, but I didn’t know how prevalent it was,” Steele said. She had a radon mitigation system installed in her home for about $1,200 and now undergoes targeted treatment for her cancer while advocating for preventive steps, including radon testing. “When you’re in nursing, it’s all about patient education — doing things that are healthy instead of treating disease.”

Maria Steele, of Adel, Iowa, was diagnosed with lung cancer in 2019 after not smoking and not being exposed to second-hand smoke. She now advocates for cancer-related legislation, including a bill to require new single-family homes to have radon mitigation. She is pictured at the Iowa State Capitol in Des Moines in March 2024. (Erin Jordan/The Gazette)

Radon breaks down into radioactive elements that, when inhaled, damages DNA in the body. It’s the No. 1 cause of lung cancer among nonsmokers and the No. 2 cause of lung cancer overall, according to the U.S. Environmental Protection Agency. Iowa is the only state entirely in high-risk areas for radon, which stretch across the northern U.S.

Radon is one of several naturally occurring carcinogens found in Iowa’s environment, including arsenic and uranium. Other environmental contaminants linked to cancer — like nitrate, pesticides and per- and polyfluoroalkyl substances, or PFAS — come from human activities. Residents can be exposed through the water they drink, the air they breathe, the food they eat and the products they use.

In July, the Iowa Cancer Consortium created what it calls its Task Force — a new work group focused on learning more about environmental carcinogens in Iowa. The partnership has since swollen to around 50 members, spanning from cancer researchers to cancer survivors and state senators to agronomists, with dozens more joining educational seminars about the topic.

The task force doesn’t currently convene on a regular basis, nor does it have any long-term goals other than continued conversations between stakeholders, Sittig said.

“I think it’s very new,” she said about the push to investigate environmental factors in cancer rates. “What I see our task force doing is getting the right players in the right place at the right time.”

The Iowa Cancer Plan advocates for increased education and research about environmental carcinogens and their cancer risks, specifically PFAS, arsenic, pesticides and nitrate. It emphasizes the importance of proper waste management, diligent water testing, safe home siting, and air and water pollution reduction. The plan also aims to reduce exposures for at-risk workforces, including firefighters and agricultural workers, and for high-risk groups like children, pregnant people and communities of color.

Tying cancer to its cause is tricky at its best and impossible at its worst. It’s unlikely that any one exposure is going to cause cancer, researchers stressed. More likely, it’s a complex combination of factors. Still, investigating potential environmental contributors is an important piece of that puzzle.

“I don’t believe there’s one source or a couple of sources that are causing these very different types of cancers because the distribution is different for all of them,” Charlton said. “I just caution anybody in any role about jumping to conclusions that are not evidence-based. That shuts down conversations instead of starts them.”

Gazette reporter Erin Jordan contributed to this report.

Brittney J. Miller is the Energy & Environment Reporter for The Gazette and a corps member with Report for America, a national service program that places journalists in local newsrooms to report on under-covered issues.

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