A recent survey has found that a significant number of patients who develop colorectal cancer (CRC) before the age of 50 are misdiagnosed several times. Multiple misdiagnoses often results in the disease being diagnosed at an advanced stage, decreasing survival rates.
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Despite deaths from colorectal cancer cases falling significantly in the past decade, the disease remains the second leading cause of cancer-related deaths in the US. This may be due to a sharp increase of colorectal cancer diagnoses in young adults aged 20 to 49 years old.
Dr. Ronit Yarden, PhD, MHSA, the study’s lead author and director of medical affairs at the non-profit Colorectal Cancer Alliance, described this increase as “alarming”, stating:
Despite declining incidence in older adults, there has been a rapid and alarming rise in colorectal cancer incidence among young adults in recent decades. We do not yet know the cause of the rising incidence in younger patients, and there is little awareness of this trend among health care providers.”
Dr. Ronit Yarden, Lead Author
The study comprised 1,195 participants, 57% of which were diagnosed between ages 40-49, 33% diagnosed between 30-39, and 10 percent diagnosed before the age of 30.
Of these participants, 30 percent reported a family history of colorectal cancer, and eight percent had received a previous diagnosis of Lynch syndrome, which is a genetic condition associated with an increased risk of developing a number of different cancers, including CRC.
The survey, which was carried out over social media and funded by the Colorectal Cancer Alliance, aimed to “track the self-reported clinical psychosocial, financial and quality of life experiences of this often overlooked, group.”
It found that, while most patients over the age of 50 were diagnosed with CRC in its early stages, “most of the young-onset patients and survivors (71%) were diagnosed at advanced stages.”
Being diagnosed at stages III and IV meant the patients were forced to undergo aggressive therapies, resulting in a consequent decrease in their quality of life. Patients experienced neuropathy, anxiety, clinical depression, and sexual dysfunctions.
Why are younger people overlooked in colorectal cancer diagnoses?
Yarden hypothesizes that young people with colorectal cancer are often misdiagnosed as they “tend to be healthy.” She added, “Physicians may attribute patients’ symptoms to more common conditions, like hemorrhoids or inflammatory bowel syndrome, and may lack the urgency to refer patients to tests that may identify early-stage colorectal cancer.”
Yarden also acknowledges that there is a lack of awareness around colorectal cancer in younger people, and advises:
Young people need to be aware that colorectal cancer can happen at any age and it is not a disease of old people. Everybody should listen to their body and, if it doesn’t feel right, go to the doctor to be tested.”
She also emphasized the importance of recognizing the symptoms of the disease.
Symptoms of colorectal cancer include a change in bowel habits, including constipation, alternating bouts of constipation and diarrhea, and blood or mucus in the stool. Abdominal pain, a feeling that the bowels are never completely empty, and a constant need to go to the toilet can also be experienced.
Populations at a higher risk of developing CRC include African Americans, Alaska Natives and those with a family or personal history of colon or rectal polyps.
Although not involved in the research, Dr. Paul Oberstein, a medical oncologist and Medical Director at NYU Langone’s Perlmutter Cancer Center in New York spoke on the incidence of CRC in younger populations, stating that it was “still a rare thing” for younger people to develop colon cancer.
He added: “But it does happen, and I think for people who have signs of it – constipation, rectal bleeding or trouble going to the bathroom – they should get evaluated for cancer, among other conditions.”
Early screening could save lives
Oberstein offered advice on getting screened early if a patient has a family history of colorectal cancer.
“What’s really important is that people who have a family history of colon cancer – being any first-degree relative who had colon cancer at any age – that person should get screened at age 40 or 10 years before the family member’s diagnosis. So if your father had it at 45, get screened at 35.”
Dr. Nilofer Azad, who was also not involved in the research but is an associate professor of oncology at the Johns Hopkins Kimmel Cancer Center in Baltimore and a member of the AACR Stand Up 2 Cancer Colorectal Cancer Dream Team said:
When you have symptoms that are consistent with a diagnosis of colorectal cancer, you should be evaluated the same way a person would be evaluated if they were 30 years older. The default should be to rule out serious conditions, including cancer, rather than making assumptions that something is not cancer or benign.”
Misdiagnosis is common
63 percent of the survey respondents reported that they had waited from three to 12 months before consulting a doctor about their symptoms, as they were not aware they might indicate colorectal cancer.
Regarding subsequent misdiagnoses, 67 percent of the survey respondents stated they had seen at least two physicians, with some seeing over four physicians before receiving a colorectal cancer diagnosis.
Limitations of the study were recognized, which included self-reported responses, the fact that the study was carried out over social media, and that further studies analyzing larger groups of patients comparing results with older patients have not yet been carried out.
The authors believe that the study “indicates that medical professionals and young adults need to be aware of the increasing incidence rate of young-onset CRC, the signs and symptoms, and the importance of timely screening when those symptoms are present, regardless of age.”
The study was announced during a media preview of the AACR Annual Meeting 2019 and will be presented at the conference itself. For more information