According to the Centers for Disease Control and Prevention, getting screened for colon cancer isn't recommended to people under 50. Other cancer screenings also have specific guidelines and, typically, anyone who wants to be tested outside of those guidelines will have to pay for it out of pocket. This can be a frustrating roadblock for anyone who wants to be proactive about their well-being. Which has made many wonder: What is the point of these screening guidelines, anyways?
Here, doctors explain how cancer screening guidelines are set, when to think outside of these guidelines, and how you can be your best health advocate.
How cancer screening guidelines are set
As an internal medicine physician, Charles Elder, MD, MPH, has to be aware of what the screening guidelines are for various health conditions, and also be clued into patients' health enough to know when to think outside these guidelines. "Screening guidelines are set by panels of experts and based upon data and evidence," he explains. Besides the CDC, the American Cancer Society, National Cancer Institute, U.S. Preventive Services Task Force, American College of Physicians, and American College of Surgeons also sets guidelines for many cancer screenings.
Gastroenterologist Edward Share, MD, says these organizations examine studies and data about disease rates and known risk factors to put together cancer screening recommendations based on age, family history, weight, lifestyle factors (such as smoking), and race. Organizations also consider access to test and treatment when determining guidelines. "If you drop the screening age to include a population that hasn't shown to be at a great risk, you're taking resources away from older populations that are at increased risk," he says. If resources are spread too thin, he says it may cause those who are at risk for certain health conditions to be even more at risk because of the lack of resources that could be come available.
Often, different groups might get different recommendations based on their unique risk factors. For example, Dr. Share says that the guidelines for colorectal cancer screenings are different for Black Americans than it is for other race groups. "Data shows that African Americans tend to get colon cancer earlier than white people and it's often more advanced." Thus, the American Society for Gastrointestinal Endoscopy recommends that Black Americans get screened for colon cancer starting at age 45 instead of 50 (which is the age the CDC broadly recommends for all people to start testing).
However, other cancer screening recommendations are more broad. For example, current breast cancer screening guidelines do not vary for different racial groups, despite the fact that data shows Black women are more likely to die from breast cancer despite experiencing it at lower rates than white women.
Why are these guidelines important?
Cancer screening guidelines play a role in helping doctors decide what to recommend to their patients—and help them weigh any risks or downsides. "There are both pros and cons to getting screened," Dr. Elder says. "The main pro, of course, is catching cancer early and [treating] it sooner. But screenings also come with risks. For example, a risk to getting a colonoscopy [which is how you screen for colon cancer] is perforating the colon."
Even less invasive screenings, like blood tests for sexually transmitted infections, can come with some risk. "There's also a risk for a false positive," Dr. Elder says. "If someone is at a minimal risk for something but they decide to get screened anyway and they receive a false positive, you've really messed up this person's life," he says. "Not only are they going to be really anxious, but they could also receive treatment they don't actually need."
Insurance companies also use the guidelines to determine what's covered and what isn't. For example, Blue Cross Blue Shield Association (a national federation of 36 independent, community-based and locally operated Blue Cross and Blue Shield companies that collectively provide health care coverage for one in three Americans) considers guidelines set by five different organizations, according to their chief medical officer, Vincent Nelson, MD. "Health insurance covers screenings that meet the at-risk or normal risk criteria for when screening should start and how frequently the screenings should occur," he says.
When to think outside the guidelines—and how to be your own best advocate
Even though guidelines are crafted very carefully based on scientific data, both Dr. Elder and Dr. Share encourage patients to think about their health at a personal level and to speak up to your doctor if you have any concerns about your potential risk for a cancer or other condition.
"If someone in your family was diagnosed with cancer at a young age, that's definitely a time when you'll want to be screened for that type of cancer earlier, for example," Dr. Elder says. Screening guidelines do take into account family history, so if your family history puts you more "at risk," it should be covered by your insurance.
Lifestyle factors can also cause someone to be more at risk for certain cancers and health conditions, which are often reflected in guidelines but are still important to know. Dr. Elder says people who smoke or are obese, for example, are often at a greater risk for certain cancers, so that could lead to earlier testing than what's generally recommended.
Dr. Share says he has had patients who want to be screened for a certain type of cancer because they'll have a friend who was recently diagnosed, or read about a celebrity being diagnosed. "If you're not 'at-risk,' it's important to ask yourself why you want to be screened," he says. "If it's just for the heck of it, that's fine, but then you have to weigh that against what it will cost you." Screening costs vary by provider and the type of screening, but it isn't unusual for them to be in the thousands. The average cost of a colonoscopy, for example, is $3,000. (If you don't necessarily meet the official "at-risk" criteria but still strongly feel you should be screened, Dr. Share says you can recruit your doctor to advocate for you with your insurance provider.)
The good news is that cancer screening guidelines truly do exist for a reason. More isn't always better, and sometimes getting screened when you don't actually need to can do more harm than good. Both Dr. Share and Dr. Elder stress the importance of knowing your risk factors, communicating them to your doctor, and if you aren't at-risk but still want to be screened for something, explaining to them why. "The patient truly does have to be their own advocate," Dr. Share says.
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