Kentucky has made great strides in the past 15 years to reduce incidence and mortality rates for colorectal cancer. According to guest Dr. Whitney Jones, founder of the Colon Cancer Prevention Project, the commonwealth has improved from 49thamong states in screening for colorectal cancer to 17th.
Still, colon cancer remains a major public health concern in Kentucky, and a troubling trend has surfaced in recent years: more colorectal cancers are being detected in persons under the age of 50. Many Kentuckians are still wary of getting a colonoscopy – the most comprehensive and effective screening test for colorectal cancer – and others are unsure of the preferred age to start getting tested. But new tests are being introduced that Jones believes will help get more people screened early and then keep them on a regular schedule, which will help to reduce rates even further.
Patient Education Critical to Improving Screening Rates
As mentioned above, Kentucky’s improvements in reducing incidence and mortality rates for colorectal cancer have been substantial. Jones says that since the Colon Cancer Prevention Project (CCPP) started in the early 2000s, which also coincided with colorectal cancer becoming a Medicare-covered service, Kentucky has gone from first in the nation in both incidence and mortality rates for the disease to sixth in mortality rates while still remaining first in incidence rates (cases being diagnosed).
“That’s a great topic we need to focus on – why are we having so many cases still, even though we are screening properly?” Jones says. Part of the reason is due to more people getting screened, he explains, which has led to more early diagnoses. Jones adds that the number of colorectal cancer diagnoses per 100,000 people is still down 25 percent from when the CCPP was launched.
“And mortality rates are down over 30 percent,” he says. “So what that translates to is almost 640 people per year not getting it, or not dying from it. Those who didn’t get it, was because of prevention and taking out polyps, and those folks who didn’t die from it were people who had it diagnosed at an earlier stage.”
Many middle-aged persons are unaware that colon cancer diagnoses have risen dramatically for their age group. Jones says that 75 percent of people who are diagnosed under age 50 with colorectal cancer are in their forties. The increased rate of colorectal cancer diagnoses for this cohort has captured the attention of cancer researchers across the U.S., Jones says.
“If you’re born in 1990 compared to 1950, your rate of colon cancer risk is 200 percent increased, and your rate of rectal cancer risk is 400 percent,” he explains. “I don’t believe that we’ve yet sorted out the why. Is it something we were exposed to in utero? Is it something we’ve been exposed to in the exosome, meaning what we eat or what we breathe, or how our food’s packaged or some combination of things? There are very intelligent people out there trying to sort this out, trust me.”
This increased risk for younger people has led the American Cancer Society to lower their recommended start age for colorectal cancer screening from 50 to 45 for persons who are asymptomatic and have no family history of the disease. Jones says that for those at higher risk – who have colorectal cancer in their family or have family members who have had polyps removed at a young age – they should begin screening either at age 40 or 10 years before their family member developed colorectal cancer, whichever is earlier.
“However, there’s been a big issue,” he says. “We have not seen a reduction in mortality until we get after the age of 55, because a lot of people delay their colonoscopies and their screening tests, well beyond the on-time date for them. We’ve seen a lack of adherence. At 50 years old, only about 30 percent of people were getting their tests.” Jones says that once people become Medicare-eligible, that number rises to over 70 percent.
A Diversity of Screening Options
Kentucky’s success in improving colorectal cancer screening has largely been driven by an increase in colonoscopies, Jones says. A colonoscopy is an invasive test where a gastroenterologist examines the entire colon with a probe and removes any polyps that are found. It requires drinking a cleansing prep liquid and comes with minor medical risks, but it is the most thorough and effective screening test for colorectal cancer. “Polyps are small growths that occur in your colon over time when the DNA doesn’t work perfectly,” he explains. “Small polyps usually turn into large polyps. Large polyps, a small percentage of those, 10 to 20 percent, can turn into cancer.”
Jones acknowledges that in some parts of Kentucky, especially in Appalachia, patients lack access to gastroenterologists who can perform colonoscopies. And he says that there is still a widespread reluctance among folks to have the procedure.
“I think the issue is, a lot of people don’t want to do a colonoscopy, despite being encouraged,” he says. “And for those who don’t, there are certainly other options that they should pursue. Not being screened is not an option. The best test is the one that gets done on time. And what we want to see is the overall percentage of people getting screened for colorectal cancer increasing, regardless of the test.”
Other, less invasive tests for colorectal cancer have come on the market in recent years, Jones says. The Cologuard test advertised often on television identifies markers in hemoglobin and DNA contained in cells shed from the colon’s interior wall. Jones predicts that tests such as Cologuard will help drive up Kentucky’s colorectal cancer screening rates, although he stresses that these tests are for asymptomatic patients with no family history of the disease.
Jones says that genetic testing for colorectal cancer is on the immediate horizon. He notes that as of January 2020 Kentucky has become the first state in the U.S. to offer comprehensive genetic panel testing for certain types of cancers, including colorectal cancer.
The costs of these genetic tests have dropped substantially over the past decade, Jones says. Having the tests covered in Kentucky will help a lot of people who have high risk factors for colorectal cancer, such as a family member who had the disease under age 50, start their screening earlier.
“I think that we’re going to be using genetics a decade from now like we use CAT scans now, and you won’t even be able to imagine what it was like before you had genetics to understand what someone’s real individual risk was,” Jones says.
The Colon Cancer Prevention Project has been at the vanguard of a statewide effort to address one of Kentucky’s most grave public heath problems. Jones says the CCPP focuses on “an early messaging package” that reaches out to people in their twenties and thirties. It’s a three-point strategy: 1) making lifestyle changes such as improving diet, starting to exercise, and stopping smoking; 2) getting a handle on family history of colorectal cancer; and 3) becoming aware of symptoms.
Symptoms for colorectal cancer can often be mistaken for other problems, and overall are mild or even absent during the cancer’s early stages of development, which makes regular screening even more important. They include blood in the stool, a feeling of abdominal discomfort that persists, and a disruption in bowel movements. Jones says the CCPP advises young and middle-aged people to become aware of early warning signs and to visit a doctor as soon as they appear, as early detection and early treatment are critical to remove the cancer before it spreads to other parts of the body.
“Usually there’s a big delay between the time a person gets the symptoms – because they don’t believe it’s a 20- or 30- or 40-year-old disease – there’s a six- to nine-month delay before a person goes to see a doctor,” Jones says. “And then another three to six months before that physician recommends a definitive test. So you’re looking at a 12-month delay in diagnosis, which is inappropriate, by any means.”