A couple of decades ago, the stereotypical patient with colorectal cancer was white and over age 50. These days, the face of risk is changing, and the question of who is most likely to survive — and why — is under ever increasing scrutiny. Recently, Felice Schnoll-Sussman, MD, director of the Jay Monahan Center for Gastrointestinal Health at NewYork-Presbyterian and Weill Cornell Medical Center, sat down to talk signs, symptoms, the new face of risk (hint: it’s unwrinkled), and why some populations may be getting diagnosed later and are less likely to survive.
Everyday Health: Let’s start with the basics — what are the signs and symptoms of colorectal cancer?
Dr. Felice Schnoll-Sussman: The most common symptom of early colorectal cancer is absolutely nothing. Patients who have early cancer are asymptomatic and that is why colorectal cancer screening is done. As cancer, in the form of polyps in the colon, starts to grow, they can start to block the colon and potentially develop ulcerations that bleed. The most common symptoms people get as cancer advances are rectal bleeding, abdominal pain, weight loss, fatigue from anemia from the bleeding, and a change in bowel habits. As a cancer gets very large it has the potential to block the colon and cause obstruction so the person can’t have a bowel movement, and their belly may become distended.
EH: How often do you think people dismiss them and just assume they have run of the mill GI problems? How do you know the difference?
FSS: That is a big issue. How do you know that the symptoms you’re having are concerning? In general, what we say to people, and now this goes for young and old, is that rectal bleeding is always considered abnormal. There is something wrong if there is rectal bleeding. In the past we used to say that if young people had rectal bleeding, it’s likely hemorrhoids. Now we know that young people are also at risk for colon cancer, which usually presents with rectal bleeding because the cancer is more often in the rectum or left side. Other reasons to be concerned are if you notice something different. Maybe you usually go to the bathroom every day and now you can’t. Or someone usually goes once a day and now they have diarrhea, or the bowel movements are now narrow. In these cases, if it goes on for a couple of weeks, you should get evaluated by a physician.
EH: How much do genetics play into colorectal cancer?
FSS: The vast majority, at least 50 percent of colorectal cancers, are sporadic. They are average people with no family history and no abnormal genes. Another third have a family history, and another quarter have a rare hereditary cancer caused by an abnormal mutation in a gene that significantly increases their risk for colorectal cancer.
EH: What are the current guidelines for screening — and how many people actually do it?
FSS: Several years ago, the American Cancer Society decreased the recommended age to start screening to 45, and other societies have fallen suit. So, for the average person with no family history, without inflammatory disease, man or woman, all races, screening starts at age 45. In the United States, probably 68 percent of people who are eligible actually have appropriate screening. We want to do better.
EH: What if someone has a family history?
FSS: If there’s a family history of colon cancer, like a first degree relative, you’d want to start screening ten years younger than the age the relative developed the disease. If they got sick at 50, you’d want to start at 30. If they got sick at 30, you’d want to start at 20.
EH: Is there ever an end to screening?
FSS: Screening in general goes through age 75. That said, a lot of people will say, I’m 75 and I’m great, should I stop screening? Most practitioners would say no. Guidelines are guidelines, but we look at the patient. Some people will have had screening between ages 45 and 75 and had nothing occur and the chances of something happening are so low you might stop. But if you were someone who had had polyps during screening, we might continue.
EH: The pandemic also gave rise to wider use of less invasive tests for colorectal cancer, like those that test stool for signs of blood. How do you feel about them?
FSS: So, the saying most of us use is that the best test is the one that gets done, any screening is better than no screening. There are fantastic noninvasive screening tests out there. We are not screening 100 percent of people. Even if we tried to screen every person in the United States who needs screening by colonoscopy, we don’t have enough capacity to do it all. The only way to get to 100 is to employ some of the other screening methods. They are great — when used the right way. But if a test is positive, whether it is a blood and stool test or a stool based genetic test, or a virtual colonoscopy, the person must go on to a colonoscopy to complete the evaluation.
EH: Let’s talk trends. There used to be a certain profile of who was at risk for this disease, but that seems to be changing. Can you draw us a picture?
FSS: This is a frightening thing. The vast majority of people who get colorectal cancer are still older people. The biggest risk factors are a family history and being over 50. We also used to think of certain risk factors, such as obesity and smoking and a Western diet. But over the past two decades we’ve recognized the increasing incidence of colorectal cancer in young people. It’s called young onset colorectal cancer. These are people below screening age, who present as young as in their twenties with colorectal cancer. The majority are Caucasian, and more often female than not. They most commonly present with rectal bleeding. These patients are very often healthy patients that exercise and take care of themselves and have no family history. And the scariest thing is that they often present with later stage aggressive cancers.
EH: Are these tumors in younger people different than those that arise in older patients?
FSS: Most often the cancer is in the left side of the colon, near the rectum. Biologically they seem to be more aggressive than the colon cancers in older individuals. Why this is happening we still don’t know. People are speculating that it’s related to something that this age group of people may have been exposed to, whether it’s environmental or food.
EH: Are they presenting with more advanced cancers because they are below screening age or because of the cancers themselves?
FSS: One of the interesting things has to do with age. If you’re dealing with a lesion that bleeds and the person starts to become anemic, if the person is older and has heart disease or lung disease, they become more symptomatic earlier than a younger person who can tolerate their blood count dropping through the floor. They don’t really feel it. That’s one of the issues with presenting later. The other thing that happens is how many in this age group who don’t have a doctor. Maybe they were seen by a pediatrician but haven’t had a doctor for years, so they don’t have a primary care doctor to run routine bloodwork on them. Women might get this through routine gynecological screening. But young men don’t get that. Also, many are at an age when they have dropped off their parents’ health insurance but didn’t pick up new insurance, either because their job doesn’t offer it or it’s too expensive. And then many physicians don’t think of a young person having cancer, either. So we need increased awareness among both patients and providers.
EH: Do you think screening rules should be changed at all based on younger trends?
FSS: Reducing the age to 45 was an incredible thing for us to do. And we did this because of recognizing the younger situation going on and trying to make some dent in that. The greatest uptick in screening in the last several years has been in those between 45 and 50 since we reduced the age to start screening. I don’t think it’s necessary to reduce the screening age again. What we need to do is watch what impact the change in screening age and increased awareness is doing and hopefully over the next several years we’ll see a downtick in the incidence of colorectal cancer.
EH: There are also some populations that are at higher risk. Can you tell us who they are?
FSS: So, when you look at the overall group of patients in terms of who presents with it and who dies with it there are definitely some variations based on ethnicity. Black males and females are disproportionately diagnosed with a greater prevalence of colorectal cancer and are diagnosed at later stage of disease and have poorer overall survival than whites and American Indians and Asians. The data is pretty convincing.
EH: Are they at higher risk because of inequitable care or differences in genetics or environment, or all of the above?
FSS: From a biology standpoint we don’t see specific hereditary differences or differences in the DNA of the tumors. So we have to look at other things, like inequities in care. The guidelines for screening are the same, but guidelines just tell you what to test for and when to start them. Some of the bigger issues are getting the word out, and what sort of trust there is in the medical community. One thing we saw with COVID is that it really exposed that there are some subsets of patients who distrust the medical community. If you don’t trust physicians, you’re not going to listen to things about screening exams, especially invasive screening exams. And we have to figure out what people need. Sometimes that is a translator so that the patient can truly understand the subtleties of what is being discussed, sometimes although they have insurance to cover the exam they can’t get time off work, or don’t have childcare or transportation to the procedure. These are all barriers that need to be deeply understood. Just having a physician offer a colonoscopy is not enough.
EH: If there’s one message you wanted to get out to the general population what would it be?
FSS: You know your body the best. It doesn’t matter what age you are. I tell patients to think about themselves and notice the changes. In every decade of life, we notice changes. You have to understand and be aware of them. How often do you go to the bathroom? How does your belly feel afterward? Look at your stool. Many people never look at their stool. How are they going to know if there’s blood in their stool if they don’t look at it? I know it’s not the prettiest thing, but you have to look. And weight. You should be aware of your weight, and your appetite. Sometimes a patient comes in and we put them on the scale and they have dropped ten pounds, and they don’t even know it.
EH: Anything else?
FSS: Know your family history. If you don’t know your family history, go today and ask a parent, tell me, what did my grandparents die from? What do we know? Ask before all those family members are gone. Lots of the time, if you don’t ask, you end up with things people sort of know. Like, grandma died of cancer in her belly. Where in the belly? Pancreas? Colon? Stomach? And if you get a sense that there’s a lot of cancer in your family, take it to your doctor and ask about genetic testing. Say, does my family history sound crazy to you? Does it sound like I need genetic testing? You’re better off checking it out than letting it go. And lastly, I usually tell patients: Talk to your doctor if you have any concerns.