Porter, who lives in Cheverly, said she is in a better place in life now but used to wonder if things would have been different if her illness had been diagnosed earlier.
Patients under 50 don't seem to be dying at higher rates despite the more frequent diagnosis, research has found. Dr. You said that may be because their younger bodies can better withstand treatment.
In addition to lifelong bowel problems, younger survivors may have to deal with other side effects of the cancer, such as infertility issues caused by the radiation and other treatments used to fight the disease. Stotsky-Himelfarb, now 40, was able to preserve her eggs, but can't carry a baby, so she and her husband are looking for a surrogate.
Researchers have been debating ways to better address how colorectal cancer affects young people.
Dr. Durado Brooks, director of prostate and colorectal cancers at the American Cancer Society, said he doesn't believe lowering the age of screening is the answer because the tests are so invasive. Others say it would not be cost-effective to test everyone.
"If you are talking about looking at hundreds of thousands of people in their 30s and 40s for testing, the numbers of cancer cases you would find would be so small compared to the harm that you could cause some people through testing," he said.
Brooks and others said doctors and patients need to be better educated about the risk factors and symptoms so that the right young people can be tested. Doctors need to improve their efforts at collecting family history and patients need to be better at chronicling their medical history, Brooks said. Risk factors include family history, obesity, lack of exercise and a high fat diet.
Some doctors are using demographic data to pinpoint patients who may be more at risk.
Dr. Niraj Jani, chief director of gastroenterology at Greater Baltimore Medical Center in Towson, said he recommends African-American men get tested at 45 because they are at higher risk for colon cancer. He follows guidelines by the American College of Gastroenterology and the American Society of Gastrointestinal Endoscopy, which are more stringent than the more commonly used guidelines established by the U.S. Preventive Measure Task Force.
Jani said that it's still sometimes hard to get patients to see a doctor even when they have risk factors.
"People are sometimes afraid," Jani said. "If they don't know, they don't have to deal with it. But doctors have to be vigilant about getting their patients tested."