Just over a year ago, Tracy Dethlefs learned she has stage 1 breast cancer. Since then, she estimates she has charted some 10,000 miles traveling from her farm near Loup City in central Nebraska to area hospitals for treatment. Every surgery, round of chemotherapy and radiation treatment was a road trip.
“Radiation treatments usually (take) only about 5 minutes (on) a day that they have to see you,” Dethlefs said. “But for a week, for seven weeks in a row, you’re driving every single day to the cancer treatment center. We’re about an hour away from cancer centers.”
Life was already busy. Dethlefs holds down three nursing jobs in Lincoln, Kearney, and at the Loup City high school. She has seven children and step-children. And back on the farm Tracy and her husband keep a small herd of black, Angus cattle.
At times during her treatment, Dethlefs says, the cows had to take a back seat.
“We work our full hours and then come home about six o’clock at night or so,” she said. “So sometimes we’re out here chasing cows in the dark.”
Dethlefs' experience is not unusual. Distance is one of the main barriers to treatment for rural cancer patients. It’s also a barrier for research.
Doctors and researchers want to understand more about why cancer is more likely to be fatal for rural residents than most city residents. But rural patients, many of whom live hours from their and doctors and even farther from researchers, are underrepresented in research, according to many in the medical community.
The big research centers in the Midwest, for instance, are at urban hospitals in places like Omaha, Denver, Kansas City, or Iowa City. In many cases, urban patients have good access to leading research, but rural residents may be missing out.
The concern is that researchers may be missing environmental and genetic factors that could be unique to rural cancer patients.
Cancer patients provide blood and tumor samples, and fill out questions about their family history and lifestyle. Researchers comb the database for patterns.
“It collects a lot of cultural information,” said Dr. Edibaldo Silva, a cancer surgeon at UNMC. “It collects a lot of racial information, collects a lot of age, a lot of genealogy information.”
With that kind of data on rural cancer patients, the registry allows researchers to ask questions they haven’t asked before. Perhaps in the future, a patient’s treatment can be tailored to their cancer’s genetic ID.
“We’d like to be able to say that a given genetic signature or profile will give us more information than the standard microscopic exam that we’ve used in the last 200 years,” Silva said. “But that takes lots and lots and lots and lots of information.”
More than 20 hospitals are collecting data from sites in Colorado, Nebraska, Iowa, South Dakota and North Dakota, as part of the registry project. Around 2,600 patients are enrolled in the breast cancer registry so far, including Tracy Dethlefs from Loup City.
As more people sign on, Dethlefs hopes researchers will learn what, if anything may raise the cancer risk for rural patients.
“I think you’re finding if there are any common environmental factors, if it could be anything related to our area we live in, water we drink, if it’s our diets that are different,” Dethlefs said. “Anything like that is going to help find different ways to prevent it in the future generations.”
The good news for Dethlefs is that her prognosis is good. The radiation and chemotherapy appear to have worked.
Her case is stored with thousands more in the breast cancer registry. After an exhausting year living with cancer, Dethlefs says, it’s encouraging to know something good could come from it.