Q&A: Raising Awareness With the Colorectal Cancer Alliance

While other cancers may get more coverage in the media, and their ribbon colors are better known, colorectal cancer (dark blue ribbon) deserves your attention. It is an equal-opportunity disease—all genders have a colon and a rectum, so no one is immune to it—and doesn't tend to present symptoms until well in its progression. Plus, it's the second-leading cause of cancer deaths overall in the United States.

More than 151,000 people are expected to be diagnosed with colorectal cancer in 2022, and more than 52,000 will die from it, according to estimates by the American Cancer Society.

Paying attention now?

As part of Giddy's Colorectal Cancer Awareness Month series in March, we contacted Marcie Klein, vice president of prevention for the Colorectal Cancer Alliance, who sent us written answers. Klein has been with the alliance for more than a year and has made it her objective to end the stigma that surrounds colorectal cancer and prevents people from taking the lifesaving action of routine screening.

Klein: The Colorectal Cancer Alliance is a leading nonprofit organization dedicated to ending colorectal cancer. Through our mission pillars to screen, care and cure, we create awareness for preventive screening, we support patients and caregivers, and we accelerate critical research. Our CEO, Michael Sapienza, lost his mother to colorectal cancer. For all of us at the alliance, the mission to end colorectal cancer is personal, and all of our work focuses on the patients, survivors, caregivers and family members affected by this disease.

During National Colorectal Cancer Awareness Month, we're focused on increasing every person's access to lifesaving screening, care, treatment and community. An individual's ZIP code should not influence their access to preventive care and the risk of developing or dying from colorectal cancer. But the fact is: a person's access to resources is too often the difference between getting screened or not, getting high-quality treatment or not, and living or not. Indeed, the mission to end colorectal cancer begins with getting everyone screened on time. We're asking folks to visit quiz.getscreened.org for a free screening recommendation based on their individual risk factors. The quiz is a gateway to patient navigation, support and even screening assistance.

The USPSTF's decision to lower the recommended colorectal cancer screening age for people at average risk is a tremendous step forward in saving lives. With this new guideline, about 20 million additional people are eligible to be screened at no cost through their insurance. Screening is the No. 1 way to prevent colorectal cancer or detect it early, when treatment is most effective.

The decision reflects the changing face of colorectal cancer, which is getting younger. More than 1 in 10 colorectal cancer patients are under age 50, and that number is rising each year. While we celebrate this new guideline, we believe it's just the beginning. Research to understand disparities in screening, diagnosis and treatment in the BIPOC [Black, Indigenous, people of color] community is needed. Research can inform whether screening should start earlier for some groups.

We recommend everyone speak with their healthcare provider about when they should begin colorectal cancer screening, as it isn't the same for everyone. People at higher risk—those with a family history of the disease or certain genetic conditions like Lynch syndrome—will need to get checked earlier. Starting the conversation is as simple as asking two questions:

1. When should I start colorectal cancer screening?
2. What test is right for me?

Most people have testing options. And don't be embarrassed! Colorectal cancer is common, and every healthcare provider should place an emphasis on prevention. Your butt is just another body part, like any other.

One of the deadliest misunderstandings people have about colorectal cancer is when to get screened. Too many people believe they only need to get checked if they have symptoms, like blood in their stool, persistent abdominal pain or changing bathroom habits. This couldn't be further from the truth. Colorectal cancer often develops without symptoms. By the time you have blood in your stool or another symptom, you may already have advanced-stage colorectal cancer, which is much more difficult to treat.

The second misunderstanding is the idea that colorectal cancer only happens to older people. While it is true that the average age at diagnosis is 66 years old, that number is dropping because of the rise in young-onset colorectal cancer, which is when CRC occurs in people under age 50. We have seen children and teenagers develop this disease and die from it. There is no such thing as "too young" for colorectal cancer.

I'd say that I can introduce you to dozens of once-healthy and active young men and women whose lives were forever changed by this disease. I'd tell them about Vinny, a teenager from Texas who died last year, or Jenna, who was pregnant when she discovered stage IV colorectal cancer.

The stories of young people diagnosed with this disease are tragic and, unfortunately, plentiful. This is why you need to get screened when appropriate, and if you haven't reached that age yet, take care of your health, pay attention to your body and follow up with doctors if symptoms persist. Do not take "No" or "You're too young" for an answer when it comes to your life.

Every community is impacted by colorectal cancer. Any age. Any gender. Any race. Any fitness level. Anyone can develop this disease. But it does have a greater impact among some racial and ethnic groups for reasons we're just beginning to understand. Black Americans, for example, are 35 percent more likely to die from colorectal cancer and 20 percent more likely to develop it. American Indians and Alaskan natives experience the highest incidence rate of any group. Ashkenazi Jews also experience a higher burden of colorectal cancer. If you are reading this—but especially if you're a member of one of these groups—you need to take colorectal cancer screening seriously, and you should let people in your community know about the risk.

Late last year, we announced a transformative research investment strategy to guide colorectal researchers and our own $30 million research commitment. This is critical in an area that receives a fraction of research funding compared to other less deadly cancers that are more commonly discussed in the media and in conversation. What we're most excited about is when research develops into tools and treatments with a real impact on patients.

The ongoing research into biomarkers, which can help inform and improve treatment, is a great example. We tell patients to get tested for their biomarkers. One young-onset CRC patient, Jessica, will tell you that biomarker testing has extended her life for years, and she's become a big advocate for it. We've also partnered with Perthera, a precision oncology company, to provide patients with access to biomarker testing and, as a result, world-class care no matter where they live. (You can learn more about biomarkers here.)

We've made it easy for anyone to get involved during National Colorectal Cancer Awareness Month. Just visit our website to engage with our social media posts. This takes someone a few seconds, but it can really be lifesaving.

Because it's so important, I'd repeat an earlier point: If you're not sure about when or how to get screened for colorectal cancer, visit quiz.getscreened.org for a personalized recommendation. And if you have any questions, we have a full team of certified patient and family support navigators who are available for free at 877-422-2030.