Why are millennials developing colorectal cancer when we live in a country with tests available to prevent it?
Believe it or not, every day seemingly young and healthy people in their 20s, 30s, and 40s receive the life-changing news that they have colorectal cancer.
In 2020, the most up-to-date data from the American Cancer Society predicted that every day 49 people under the age of 50 would be diagnosed with colorectal cancer. That’s 17,930 newly diagnosed people for the year with more than 3,000 of them ultimately losing their lives to the disease.
It goes to show that, ‘age is just a number’ when it comes to colorectal cancer, and for millennials, the numbers keep climbing.
While research points to diet, lack of exercise, and environmental factors as potential causes of the rising numbers in Generation Y, the root cause is still under investigation.
To truly understand why millennials are increasingly impacted by a disease that we have the ability to detect early, we must know what is befalling patients and healthcare providers along the way to a diagnosis and more importantly, in preventing the disease all together.
Key players along that path, Primary Care doctor, Sonia Singh, MD, age 35, Gastrointestinal Specialist (GI), Lori Robbins, MD, age 37, and Medical Oncologist, Suneel Kamath, MD, age 35, tell us about the pitfalls and challenges they face in diagnosing fellow millennials with colorectal cancer and preventing the disease.
Together, they shed light on how their fellow millennials—patients and colleagues—can improve the process and save lives.
The Pitfalls Before Us
It starts from the beginning. Getting an appointment can take weeks because doctors have more patients than time allows, Singh said.
In primary care, she finds the top barriers to care millennial patients face are an inconvenient and inefficient healthcare system, confusion about finding the right doctor, frustration with communication, and fear of surprise bills.
For primary care physicians, the two biggest challenges in preventing and diagnosing colorectal cancer, she finds are: “Simply getting millennials into the office and getting them to a GI doctor [the wait is often weeks to months].”
“Many millennials are immediately turned off by the healthcare system generally and are therefore less likely to actually seek care when an issue arises,” Singh said.
Once a patient gets to a GI doctor, the next hurdle to cross is the misconception about millennials’ health.
“The biggest problem that I see is the common misconception that every young person with diarrhea has Irritable Bowel Syndrome and every young person with rectal bleeding has hemorrhoids,” said Robbins, a GI Specialist in Charleston, South Carolina.
She points out that many gastrointestinal diseases can cause identical symptoms, but some can be life threatening, like colon cancer.
Robbins has had separate patients with hemorrhoids, inflammatory bowel disease, and colon cancer—three very different diseases—all experiencing identical symptoms.
“One major problem is that patients in their 20s and 30s presenting with symptoms, such as rectal bleeding, are less likely to have colon cancer. This means symptoms are more likely to be dismissed in these younger patients, even by physicians, which leads to cancer being diagnosed in younger patients at later stages,” Robbins said.
Kamath, a medical oncologist, who has treated millennials living with late-stage colorectal cancer, has encountered the same problem.
“Many doctors don’t think young people can get colorectal cancer, so they hear symptoms like blood in the stool, rectal bleeding, severe and persistent constipation or thin stool/changes in stool caliber that are concerning, but they don’t think of it in the same way as they would for patients in their 50s or 60s with the same symptoms,” Kamath said.
“Similarly, patients themselves aren’t aware, so they might downplay their symptoms, as being from hemorrhoids or an anal fissure.”
Self-Diagnosis and Keeping Quiet
Robbins has seen the same with many young patients diagnosing themselves before they ever see a GI specialist. And only those whose symptoms bother them enough are the ones who even come to seek treatment.
“When I see millennial patients in clinic, they don’t come to me complaining of ‘rectal bleeding’ or ‘blood in their poop.’ They tell my medical assistant they are coming for ‘treatment of hemorrhoids.’ The problem is that the diagnosis is not always correct,” Robbins explained.
If the bleeding is actually from a cancer rather than hemorrhoids, she says, by the time the patient comes in we may be looking at later disease.
The other piece to the diagnosis puzzle is that patients can be really uncomfortable and embarrassed to talk about their digestive symptoms, which can lead to a delayed diagnosis, Robbins shared. And getting a colonoscopy to assess if a cancer is the cause can be made more difficult simply because you are younger than 45.
Singh, Robbins, and Kamath have all found insurance coverage for colonoscopies to be problematic for millennial-aged patients.
“Our healthcare system is essentially a patchwork quilt of dysfunction,” Singh said. “Insurance-based coverage often requires patients and doctors to jump through many hoops to get necessary services—like colonoscopies—covered.”
Adding, “You rarely know the cost of any service until it’s been completed and billed to the insurance.”
Robbins has found that the biggest problem is colonoscopies are far more expensive when patients are having symptoms than when they are used as screening tools—based on age and risk factors—and performed on asymptomatic patients.
“A colonoscopy done for symptoms usually counts towards a deductible, and the patient may need to pay a significant copay, whereas screening colonoscopies are considered preventative care and are often fully covered,” Robbins explained. “For some patients, having a colonoscopy done for diagnostic purposes [based on symptoms] may be cost prohibitive.”
Kamath has even found that insurance companies can deny colonoscopy coverage for younger people, saying the test is not medically necessary.
Spreading Awareness is Key
That’s just simply not true.
Just because someone is under age 45—the youngest age national guidelines recommend for colonoscopy screenings—it does not mean their test is not medically necessary.
Most patients are unaware of the significant impact family history of a first degree relative with colon polyps and colorectal cancer has on risk and timing of your first colonoscopy screening.
“I think very few people know this important fact. Just as few people who have had polyps have probably told their family members,” Kamath said. “Even if us doctors know that family history of polyps matters, many patients if you ask them about it might say, ‘no’ when they just aren’t aware they have this family history.”
Robbins also sees missed opportunities to ask about family history, such as that of large polyps, at younger patients’ primary care visits due to her colleagues’ time constraints.
“This unfortunately means that the subject is often not brought up until the regular screening age of 45,” Robbins said. “I end up seeing a lot of patients with colon cancer or advanced polyps who have their first colonoscopies at 45 or 50, which is later than recommended in patients who have a family history.”
Also, family history makes patients ineligible for noninvasive screening tests, such as Cologuard. Those tests are for average-risk individuals and can miss close to 60% of advanced polyps, Robbins said. That’s why patients at high risk of colorectal cancer, like those with family history, will never qualify for them.
Unfortunately, many millennials and their families are not familiar with these important facts—something all three physicians are working to change.
“It’s only by sharing these details with our families, friends, and patients that we can start screening early, protect those who we love, and potentially save a lot of lives,” Robbins said.