The 2025 Cancer in Iowa report focuses on cancer survivorship in the state. (Photo courtesy of the University of Iowa Holden Comprehensive Cancer Center)
Des Moines resident Katie McKenzie told media and medical experts Tuesday that when living with a blood cancer with no cure, there are times where cancer is in the driver’s seat of her life.
McKenzie was diagnosed with Multiple Myeloma in 2019 and received a stem cell transplant in January 2020, released from the hospital just before the COVID-19 pandemic began. She said she’s relapsed once since the transplant and has been on her current treatment for two years.
Before her diagnosis, McKenzie said she was juggling work, family and volunteering, among other things. When she realized after her treatment she wouldn’t be able to step back into things like she could before, she found survivorship programs that helped her financially, physically and socially.
“Through these groups, through the opportunities, (I’ve been) learning new strategies to kick that cancer to the back seat — it’s always going to be hanging out, but it’s not going to be driving,” McKenzie said. “I’ve been able to develop the skills to live a more mindful life.”
The Iowa Cancer Registry released the 2025 Cancer in Iowa report Tuesday, focused on the changing metrics of cancer survivorship in the state while detailing Iowa’s continued trend of high, and fast-growing, rate of new cancer diagnoses. Iowa still has the second-highest age-adjusted rate of cancers in the U.S. and the fastest-growing rate of new cancers, according to the report, and is one of only two states with rising rates of new cancer cases. Kentucky, with a high rate of smoking-related cancers, is the only state ahead of Iowa in this respect.
A panel of medical experts and cancer survivors spoke on the report, their experiences with what comes after a cancer diagnosis and how survivors can still be supported even after their main treatment has ended. They also addressed questions of state support and federal funding for essential research.
According to the 2024 Cancer in Iowa report, there were nearly 169,000 cancer survivors in the state last year. This year’s report shows that number has increased to more than 171,000 cancer survivors.
Sarah Nash, director of research, analytics and dissemination for the Iowa Cancer Registry and UI assistant professor, said during the press conference increasing rates of new cancer diagnoses, coupled with improvements in detecting and treating cancer leading to fewer cancer deaths, means the number of cancer survivors, who have their own unique needs separate from cancer treatments, is increasing.
“Many survivors need long-term support from their health care providers, their community and their caregivers,” Nash said. “So it’s really important to understand the impact of a quickly growing number of cancer survivors.”
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The 2025 report predicts that 21,200 new cases of invasive cancers will be diagnosed in Iowans this year, a number Nash said increased by 200 from last year. Expected deaths have also risen by 200 to 6,300. Lung, colorectal and pancreatic cancers are the top three causes of cancer death in the state, Nash said, which, when combined with numbers from breast and prostate cancer deaths, make up just over half of all cancer deaths in Iowa.
More than one in 20 Iowans will have a cancer diagnosis at some point, the report stated. Breast and prostate cancers, which Nash said are among the most common cancer diagnoses in Iowa, have a long survival time, meaning the number of cancer survivors will continue to grow, especially as treatments get better. As this population increases, programs aimed at helping cancer survivors thrive become more and more important, she said.
“Cancer survivors have unique needs that must be considered by health care providers, which may include screening for cancer recurrence and new cancers, addressing late effects and delayed symptoms of cancer treatment and improving quality of life for cancer survivors through nutrition, physical activity and movement, tobacco use, cessation and other mental health and social support services,” Nash said.
These needs are not the same across the board for all cancer survivors, Nash said — what kind of help they require could change based on age, how much time has passed since their diagnosis and main treatment, and more.
The report includes five priorities to address cancer survivorship in Iowa, called the Iowa Cancer Plan. It includes using best practices to help patients transition from “active treatment to post-treatment care,” enhance awareness for the importance of cancer screening and risk reduction practices for survivors, ensure Iowan cancer survivors and their caregivers have excellent quality of life, enhance follow-up care for those who survived cancer in childhood throughout their life, and better access to end-of-life care.
“The Iowa Cancer Plan can serve with our blueprint to work together across health care, public health and our communities to support Iowa’s cancer survivors,” Nash said.
Richard Deming, medical director of the MercyOne Cancer Center, said despite improvements to the cure rate of cancers, cancer survivors “still face far worse physical and mental health-related quality-of-life outcomes” compared to those who haven’t had cancer, and they are also more likely to develop a second cancer. Cancer survivors still face a plethora of struggles after they’ve been told they’re cancer free, he added, but often cancer care providers stop giving them as much attention.
“A good health system treats cancer and kills cancer cells,” Deming said. “A great health system takes care of patients and families who have experienced cancer.”
At the cancer survivorship center at the MercyOne cancer center in Des Moines, Deming said staff conduct surveillance for new cancer development in its patients, help patients modify their lifestyles to reduce risks and provide different types of touch therapy, counseling and other programs to enhance patients’ quality of life. This is all funded through philanthropy, as these activities are not reimbursed by insurance companies.
Deming also helped create Above + Beyond Cancer, a nonprofit that goes into communities throughout central Iowa to offer programming for cancer survivors, from exercise programs to social groups and trips.
McKenzie has participated in many of these programs, she said, including hikes, support groups, cooking classes, and two trips — one to Utah, and the other to the Appalachian trail in Maine and New Hampshire. While some of the activities are tough, she said they’ve been extremely helpful in alleviating her “cancer anxiety.”
“I’ve said this before, but chemo keeps me alive, but survivorship programs keep me living,” McKenzie said.
Cathy Ketton, from Waterloo, has served as a caregiver for her mother after her breast cancer diagnosis until her death a couple of years later, as well as both of her daughters, who are both cancer survivors of almost 20 years. However, she said nothing could prepare her for her own diagnosis of Pseudocarcinoma in 2022.
While Ketton said the people she worked with at her cancer center were amazing, she needed more than just smiles and questions about how she was doing — she needed a strong support system for her physical, mental and emotional health. She found this through her friends, family, counseling and other activities.
“Survivorship programs that offer support services and education could be the key to assisting survivors in all the changes that cancer has created in our lives,” Ketton said. “A survivorship program could help us move forward with less obstacles to face, and it could propel us into having a better quality of life.”
State signals support for cancer research
State Medical Director Robert Kruse said during the conference the Department of Health and Human Services has three priorities for its efforts in “reducing the burden of cancer statewide,” which include furthering cancer epidemiology research, expanding access to screenings and cancer prevention programs and strengthening survivor support.
Gov. Kim Reynolds asked the Legislature in January during her Condition of the State speech to allocate $1 million to a partnership between the state Health and Human Services department and the UI to research different factors that could contribute to high cancer rates in the state. Her husband, Kevin Reynolds, is in remission after receiving a lung cancer diagnosis.
Epidemiologists will come together to study “behavioral, genetic and environmental factors that influence cancer trends” in the state, Kruse said, in order to answer questions pertaining to why certain cancer types are more common in Iowa and what factors and risks contribute to these numbers. They will also use the data they collect to create better cancer prevention and treatment plans.
As legislation providing this funding has yet to pass through the Legislature, Kruse said the department is currently in the planning phase of the partnership, working with the UI College of Public Health to see what kinds of data they’ll want to look at and working out what the partnership will look like.
“Cancer survivorship isn’t just about living longer, it’s about living well,” Kruse said. “At Iowa HHS, we’re committed to working alongside the University of Iowa health care providers, researchers, policy makers and other partners to ensure that every Iowan has access to high quality cancer prevention, treatment and survivorship support.”
Rep. Austin Harris, R-Moulton, brought the request up at a House Education Appropriations subcommittee meeting Monday when he asked UI President Barbara Wilson how the university is preparing for the appropriation and partnership.
If received, funds won’t go toward hiring more people for research, which Wilson said was communicated to Reynolds, but will be used for reaching rural communities, data gathering and tests.
As the UI runs the Iowa Cancer Registry, Wilson said she feels excited and confident university scientists “have all the tools to take a really hard look at what is causing the high rates of cancer in Iowa.” However, with different cancers increasing at different rates in the state, Wilson said there won’t be any easy solutions to this problem.
“It’s not going to be a simple answer, (like) we just need to do X and cancer rates will change,” Wilson said. “But we’re committed to getting kind of deep into the weeds and doing good public health epidemiological research to figure out what’s what’s happening here.”
Uncertainty around federal funding continues
Funded in part by the National Cancer Institute and National Institutes of Health, the Cancer in Iowa report has been compiling cancer research and data for more than 50 years. Proposed changes to NIH and other national research funding models, which are currently tied up in court, have left the UI and universities across the U.S. with uncertainty about how their projects could be impacted.
Holden Comprehensive Cancer Center Director Mark Burkard said all research is being scrutinized on how it can be funded in the future if there are substantial cuts due to indirect cost capping or other moves. This includes cancer research, and the work being done to learn how to better help cancer survivors. No trials have been canceled so far, he said, but the future is unclear.
“Right now it’s very uncertain, and so it’s a matter of how much risk we’re going to take in investing the limited resources we’re more certain about, and how much we can raise in other ways to fill in the gap,” Burkard said.
Deming said the situation is quite different for community cancer centers, where 85% of cancer patients in the U.S. are treated.
MercyOne receives grant funding from the National Cancer Institute, a branch of NIH, and of the more than 60 clinical trials Deming’s center offers to patients, one has already been closed. The trial, which studied special needs of members of the LGBTQ+ community, was closed two weeks ago without an explanation, Deming said. The Centers for Disease Control-funded Iowa Cancer Consortium, of which Deming sits as vice president, has also lost an employee whose position was federally funded.
“So we’re afraid about what might be happening, but it’s already happening — two examples of how the change in the administration has already affected cancer services in Iowa,” Deming said.
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