Sarah DeBord was 24 when she first noticed blood in her stool. She saw a gastroenterologist who did a procedure called a flexible sigmoidoscopy to examine her lower colon and rectum, then gave her a diagnosis of hemorrhoids.
“I don’t see any hemorrhoids, but that’s probably what it is,” Ms. DeBord recalled the doctor saying.
For the next 10 years, whenever Ms. DeBord saw blood in her stool, she told herself it was probably hemorrhoids. At 34, she began losing a lot of weight, which she at first chalked up to her training for a half marathon. But she was also so constipated she was making endless trips to the bathroom. She had a colonoscopy and learned she had advanced colorectal cancer that was inoperable and had spread to her lung.
“It was staring me in the face the whole time,” said Ms. DeBord, who lives in Minneapolis and has such advanced disease that she can never stop chemotherapy treatment. “I’d Google ‘blood in stool,’ and 10 different things would come up,” including colon cancer, “but I thought colon cancer was only in older people.”
Most cases of colon and rectal cancer are indeed found in people 50 and over. But there has been a sharp increase of colorectal cancer in adults as young as their 20s and 30s, with the proportion of cases found in adults under 50 increasing to 11 percent in 2013, up from 6 percent in 1990, according to the American Cancer Society. A recent study from the group that analyzed colon and rectal cancer incidence by birth year found that rates dropped steadily for people born between 1890 and 1950, but have been increasing for every generation born since 1950.
The cause, or causes, of the increase have eluded scientists. While rates of cancers tied to human papillomavirus, or HPV, have been rising in recent years, that virus causes cancers mainly of the cervix, back of the throat and anus (anal and rectal cancers are distinct), and scientists do not believe sexual behaviors or HPV are driving the increase in colon or rectal cancer.
Ms. DeBord, who has two young children and works for the Colon Cancer Coalition, is encouraging young adults to be aware of the warning signs of colorectal cancer, and urges them to get a second opinion, or a third, if they think their doctor might be missing something. Younger people are much more likely to be diagnosed after the disease has spread, when it is much harder to treat, as in Ms. DeBord’s case.
Warning signs include blood in the stool, rectal bleeding or stools that are dark or black in color. The blood, released from the tumor, may be bright red or “tarry” in appearance, which can result when blood has broken down in the intestine. Unexplained or unintentional weight loss or fatigue can also be symptoms. General digestive complaints can also occur, including persistent abdominal cramps, gas pain or low back pain, feeling bloated, or experiencing a change in bathroom habits that lasts more than a few days, such as diarrhea, constipation, narrower than usual stools or a feeling that your bowel is not emptying completely.
“I kept making excuses for my symptoms,” said Ms. DeBord, until “it got so bad I knew something was wrong.”
Many symptoms that could indicate colorectal cancer may be benign, or related to other medical conditions, which is why the diagnosis is often missed in young adults, experts say.
Iron-deficiency anemia, for example, is common in women with heavy periods, but it can also be a sign of colorectal cancer. In women who are not menstruating and in men, “anemia is colon cancer until proven otherwise,” said one expert, Dr. Thomas Weber, who serves on the steering committee of the National Colorectal Cancer Roundtable. In general, he said, worrisome symptoms that persist should be investigated, and doctors should consider ordering a colonoscopy.
Dr. Renee Williams, an assistant professor of medicine at New York University School of Medicine and a gastroenterologist at Bellevue Hospital Center, said she would take steps to rule out colorectal cancer even in menstruating women with iron deficiency if they are in their 40s, as well as in younger women with a first case of iron deficiency if they do not have heavy periods.
“We don’t want to create a panic, and the frequency in younger adults is still relatively low, but we are seeing an increase,” said Dr. Mark Pochapin, director of gastroenterology at NYU Langone Medical Center, and treasurer of the American College of Gastroenterology.
The new data “raise the flag to be vigilant,” Dr. Pochapin said. “We need doctors to realize colorectal cancer is possible in younger patients, and if they are having something like rectal bleeding, this could be something more serious. Young people’s symptoms should not be dismissed.”
Physicians are trained to think of the most common conditions first, that “When you hear hoofbeats, think horses, not zebras,” he said. “But this isn’t as much a zebra as people think.”
Routine screening tests for colorectal cancer are not currently recommended in people under 50 who are considered to be at average risk because the number of cases is so low that universal screening tests would most likely do more harm than good, experts say. Colonoscopies, for example, require sedation and can result in serious complications, such as perforation of the intestine, in a small percentage of cases.
So what’s the average millennial or Gen-Xer to do?
■ Find a primary care physician whom you like and trust, and establish a relationship with him or her, even if you don’t have any medical issues, said Dr. Pochapin. “Go to a doctor when you’re well,” he said. That way, if you ever develop worrisome symptoms, “you have easy access, and can get care from someone who knows you already. A lot of young people are embarrassed to talk about these things.”
■ Know your family history and share it with your physician. Has anyone in your family had colorectal cancer, or had precancerous polyps removed? “If you have a first-degree relative — a parent or sibling — who had colon cancer at 50,” for example, “you should be screened at 40,” or 10 years earlier, said Dr. Williams. Illness in a more distant relative may also increase the risk. Certain medical conditions, like inflammatory bowel disease and certain other cancers, may also increase the risk for colorectal cancer. If you are African-American, some medical organizations encourage screening starting earlier, at age 45, Dr. Williams said.
■ Know what’s normal for you, said Anne Carlson, executive director of the Colon Cancer Coalition. “Know your body,” she said. “Look at your stool — it’s really the picture of your health. Take pictures to show your doctor if you’re concerned. Keep a journal of what’s going on in your toilet and your eating habits and diet, and be aware of changes in your body.”
■ If your doctor isn’t taking a concern seriously, be persistent, Ms. Carlson said. “We are taught physicians know best. But you know when something isn’t right for you,” she said. If a doctor is dismissive, “go to another one, and another one.” Even though routine screening is not recommended until age 50, doctors can order diagnostic tests if you are having persistent symptoms. In addition to flexible sigmoidoscopy, which examines the rectum and lower colon, and colonoscopy, there are noninvasive laboratory tests that can be done to examine stool samples for microscopic amounts of hemoglobin, a marker for blood, and for DNA markers indicative of colorectal cancer. “Colon cancer is one of the most treatable cancers if it’s found early,” Ms. Carlson said.
■ Last but not least, a healthy lifestyle that lessens your risk of heart disease and Type 2 diabetes may also protect you from colorectal cancer. Eat a diet that’s high in fruits, vegetables and fiber, and provides enough folate and calcium. Avoid eating lots of red or grilled meats and processed meats, which are associated with an increased risk of colorectal cancer. Obesity, smoking, heavy use of alcohol and sedentary lifestyles are also associated with an increased risk. Try to keep your weight under control. Get plenty of exercise, which is believed to protect against colon cancer. If you smoke, quit.