Is fear holding you back from a potentially lifesaving screening test?
Fear was the No. 1 reason older adults gave to explain why they hadn’t gone in for a colonoscopy to screen for colon cancer, a new report says.
People who avoided the test — even though they were good candidates because of their age or at heightened risk because of family history — were scared, pure and simple. They were fearful not just because of what they might find out from the test results, but because of the bowel preparation and the procedure itself.
The respondents gave other reasons for putting off the screening, saying they were pressed for time, didn’t have good insurance coverage or were “squeamish” or just “procrastinating.” But fear was the primary reason.
The survey was carried out as an e-mail questionnaire by the Colon Cancer Alliance, a patient advocacy group. The group queried more than 15,000 people on its e-mail list, getting a response rate of just over 10 percent.
People who responded had a special interest in colon cancer and were not a nationally representative sample. They were much more likely to have had a colonoscopy than most Americans. Most had been affected by the cancer in some way, either directly or through a family member, and some worked in health professions or were caregivers.
More than 80 percent of the respondents said they had been screened, and among those 50 and older, nearly 94 percent had been screened. (Colonoscopies are recommended routinely for all Americans starting at age 50, and at younger ages for those with a family history of the disease or other risk factors.) In comparison, only about 63 percent of all Americans ages 50 to 75 have been screened, according to the Centers for Disease Control and Prevention.
Despite evidence showing that colonoscopy saves lives from colon and rectal cancer, fear holds a lot of people back.
“People have fear, and it’s easier not to go and face that fear,” said Kelly Ackerson, an assistant professor at Western Michigan University in Kalamazoo, who has studied why women avoid Pap smear screening for cervical cancer. “It’s fear of the unknown, or maybe they know someone who’s gone through it and heard how terrible it was,” she said.
Some respondents were afraid because they had witnessed the ravages of colon cancer. “Pure fear,” wrote one person over 50 who hadn’t had a colonoscopy despite a strong family history. “My grandfather, aunt and sister died from colon cancer.” Referring to the sister, the person wrote: “I saw everything that she went through. I saw her fear, her pain, her humiliation, her sadness.”
Education can help. Some consumers may not understand that both Pap smears and colonoscopies can actually prevent cancer from developing, Dr. Ackerson said, by identifying precancerous changes and benign polyps that can be treated.
Many also expressed fears about the preparation, which involves eating no solid foods and drinking only clear liquids a day before the procedure, and then often downing a gallon of what’s called PEG solution over a four-hour period. Respondents said they “dread the prep” and were “unable to finish the liquid that I had to drink the night before…it made me nauseous.”
The Colon Cancer Alliance’s report was carried out in partnership with Salix Pharmaceuticals, which makes products to treat gastrointestinal disorders, as well as an alternative colonoscopy prep that consists of a series of tablets taken with clear liquid.
When a screening procedure gets a bad rap, the reputation sticks, said Kelly Brittain, assistant professor at Michigan State University in East Lansing, who wrote her dissertation on barriers to colorectal cancer screening. Her focus was on African-Americans, whose screening rates are lower than those of the general population. Some respondents in the survey said they “had friends who have had bad experiences,” and one wrote, “I have recently heard of at least three people who have had severe complications from a colonoscopy.”
Dr. Brittain said both physicians and family members need to talk openly about screening and encourage people to overcome their hesitation.
“Family beliefs play a large role in promoting colorectal cancer screening,” she said. “If someone had a bad experience, they’ll tell the story of ‘Oh, when Uncle Joe went, it was so terrible, they nicked him, and he had a terrible bleed.’ That information sticks around a lot longer than, ‘You know what, it wasn’t so bad; the prep was yucky, but over all you should do it.’”
For more information on colon cancer screening, see “The Times Health Guide: Colonoscopy,” which includes “10 Questions You Need to Ask About Colonoscopy.”
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