Shortly after Lindsay Schmauss’ double mastectomy to treat breast cancer in 2021, she thanked her surgeon for saving her life.

“She said, ‘No, Lindsay, you saved your own life by getting that mammogram,’” Schmauss says.

The grants administrator for the Iowa Department of Public Health in Des Moines, Iowa, had her first mammogram two weeks after her 40th birthday — spurred by a birthday card she received from her gynecologist reminding her that it was time to start getting the breast cancer screening. Schmauss says she was healthy with no family history of breast cancer — or cancer of any kind — so she was shocked to learn she had stage 1A breast cancer.

“I was looking forward to taking 40 by storm, and, well, it ended up being a storm, but not the one I envisioned,” Schmauss says. “I went in because that’s what you’re supposed to do as a woman when you turn 40. If I had waited even six months after turning 40 to get screened, we would be having a much different conversation. The cancer was invasive and had started to spread. It was lifesaving that I got that mammogram when I did and that we caught the cancer as early as we did.”

The 2022 Cancer in Iowa report issued by the Health Registry of Iowa highlights the importance of cancer screenings to detect the disease early, when treatment is likely to be more successful.

This year’s focus on screening is particularly timely because it was estimated that 41 percent of U.S. adults delayed or avoided medical care — including cancer screening tests — between March 2020 when COVID-19 was declared a global pandemic and June 2020. While more recent studies have shown that cancer screening rates are rebounding, the extent of the impact of this decrease in screenings is unknown, but it’s possible it may have led to delayed diagnoses and increases in avoidable cancer deaths, experts say.

“We are hopeful that people will get back into the routine of getting screened if they haven’t already done so,” says George Weiner, director of the University of Iowa’s Holden Comprehensive Cancer Center and internal medicine physician. “They can reduce their chances of getting advanced cancer or dying of cancer by getting screened, so they should get back to it.”

According to the report, Iowa’s screening rates for breast, cervical, and colorectal cancers are slightly higher than the median screening percent in the U.S. However, there is still plenty of room for improvement. The Iowa Department of Public Health Healthy Iowans program has set screening goals of 85% for breast cancer (currently 81 percent), 92 percent for cervical cancer (currently 77 percent), and 80 percent for colorectal cancer (currently 74 percent).

One concerning trend appears in cervical cancer. The screening rate has decreased since 2008, while the rate of new cases has increased overall since 2012.

Cancer in Iowa 2022 Report

The 2022 Cancer in Iowa report, based on data from the State Health Registry of Iowa and the Iowa Department of Public Health, is available online in the “publications” section on the Registry’s website or by calling the Registry at 319-335-8609. The report includes county-by-county statistics, summaries of new research projects, and a special section focused on cancer screenings. 

Highlights from this year’s statistics include:

• An estimated 20,000 Iowans will be diagnosed with cancer in 2022. Breast cancer will be the most common cancer diagnosis, followed by prostate, lung, colon/rectum, and skin melanoma.
• An estimated 6,300 Iowans will die from cancer in 2022, making it one of the two leading causes of death in the state, along with heart disease. Lung cancer will be the cause of nearly a quarter of these deaths.
• More than 159,700 cancer survivors currently live in Iowa, based on data gathered between 1973 and 2017.

The State Health Registry of Iowa has been gathering cancer incidence and follow-up data for the state since 1973.  This project has been funded in whole or in part with Federal funds from the National Cancer Institute, National Institutes of Health, Department of Health and Human Services, under Contract No. HHSN261201800012I.

“There’s no reason to have any cases of cervical cancer anymore,” says report co-author Mary Charlton, professor of epidemiology in the UI College of Public Health. “Between screening and HPV vaccines, we know how to eliminate cervical cancer. So, when we see that it’s going up and screening is going down, it’s very disheartening.”

There are many reasons why someone may not get recommended cancer screening.

“Sometimes they don’t have a healthcare provider who advises them on the importance of screening,” Weiner says. “I’ve heard people say, ‘I had a family member or friend who got screened and developed a cancer anyway, so why bother?’ It helps to explain that screening, while not perfect, decreases the chances of dying from cancer.  People have their own reasons to avoid the medical establishment. Sometimes it has to do with trust.”

Charlton says people may be nervous about certain aspects of a screening method.

“When you think about things like a colonoscopy, it sounds unpleasant and you may have to take a day off work,” Charlton says. “But one of the things we try to make clear in the report is there may be multiple options for some types of screening. Instead of a colonoscopy, you can do a home stool test. So, you really should talk to your doctor about the different options for screening. There may be one that’s just as effective but less invasive and takes less time.”

Another potential complicating factor is there isn’t always agreement in who should be screened and when.

The U.S. Preventive Services Task Force (USPSTF) guidelines for cancer screening aim to help people of average risk decide whether they should be screened for cancer, at what age they should start screening, how often they should get screened, and by which method. However, various medical organizations have their own guidelines for certain cancers—and not all of them match. For example, guidelines for when to begin getting a mammogram range from 40 to 50 depending on which organization’s recommendations you look at.

“This is where informed decision making becomes so important,” Weiner says. “The health care practitioner should explain the pros and cons of screening and when, and then make the decision with the patient about what’s best.”

Charlton agrees that the main takeaway is to talk to your doctor.

“What you don’t want to do is not talk to anybody about screening and not get it at all,” Charlton says. “It’s important to know that it really could save your life.”

Lung cancer screening

Lung cancer is the No. 1 cause of cancer death in Iowa, accounting for one-quarter of all cancer deaths. Screening for lung cancer has been recommended for certain people since 2014, with the screening age lowered to 50 in 2021. Any adult age 50 to 80 who has a history of smoking at least a pack a day for 20 years and currently smokes, or who has quit within the past 15 years should get an annual low-dose computed tomography scan.

“This is a newer screening where the data is growing and the technology has improved,” Weiner says. “When we first started doing lung cancer screening, the CT scans were not as accurate and delivered more radiation than they do these days. But as the CT scans have gotten better and we’ve looked at the data, the benefits and recommendations are becoming much clearer.”

Lung cancer screening data will start being collected among Iowans in 2022, but the American Lung Association estimates Iowa’s lung cancer screening rate at 11%. The low rates may reflect lack of access or low awareness and knowledge among patients and providers.

“Originally, not every place had a lung cancer screening program, so if you were a provider in a system that didn’t offer it, you were probably less likely to promote it,” Charlton says. “But it’s now pretty available across the state and in the majority of counties.”

“This screening can absolutely save your life, so talk to your doctor.”

Genetic counseling for higher-risk individuals

The 2022 Cancer in Iowa report also includes information about genetic counseling. A DNA test can detect some genetic changes, and the results may provide information to help prevent cancer or detect it at its earliest stage.

“Cancer screening applies to people at average risk. But there are a lot of people who may be higher risk due to their family history or personal history,” Charlton says. “The technology has exploded in terms of being able to do really large genetic panel testing, but you need to talk to a counselor. You need to go over your family history and understand what certain tests may or may not tell you and what the results could mean before you decide to take such tests.”

With the rise of over-the-counter genetic testing kits, Charlton and Weiner emphasize the important role genetic counseling plays before and after genetic testing.

“It’s important to note that the recommendation is not for genetic testing. It’s for genetic counseling,” Weiner says. “Deciding which tests are appropriate for individual patients is not that straightforward. Tests like 23andMe can be dangerous because people get the information out of context. Genetic testing should be done within the framework of broader genetic counseling, so that the results can be put in perspective.”

Schmauss spoke to a genetic counselor after her breast cancer diagnosis.

“It was a big fear of mine that I had a cancer gene that I could have passed on to my daughter,” Schmauss says. “My genetic counselor was great. She walked me through everything, explained which tests I might need, how they work, and how they track things over time. She was so helpful and answered all my questions.”

While Schmauss tested negative for BRCA gene mutations commonly associated with an increased risk for breast and ovarian cancers, results from two other tests came back inconclusive. Doctors will monitor them over the long term, and Schmauss says the genetic counselor helped her understand what it meant and calmed her fears.

Schmauss says she was fortunate that surgery alone was able to remove the breast cancer, and neither radiation nor chemotherapy was needed.

Now, she says she feels a purpose in life to share her story and advocate for early detection.

“Even if you have no signs or symptoms, get your screenings, and get them when they’re due. Don’t delay,” Schmauss says. “Talk to your doctor about when to start mammography screening. Even if the guidelines your doctor uses recommend age 45-50 to start screening, consider starting at 40 when its optional, but your still eligible. If I had waited until 45, instead of 40, I would most likely have been stage 4 and terminal.

“Early detection saves lives. I’m a walking example of that. I never thought in a million years that this would happen to me. And I’m just so thankful that I got that screened when I did. Because of that mammogram, I get to watch my kids grow up.”