Colorectal Cancer Diagnosis Under Age 50: Participate, Educate and Advocate
By Dr. Thomas George, Medical Director of the GI Oncology Program, University of Florida
A diagnosis of cancer is never welcoming news. It is especially daunting for those in the 30-50 age bracket, who are often parents of young children, still working to provide for and raise their families, and not yet on Medicare for health insurance. Understanding colorectal cancer and knowing the latest in treatment options, as well as being an active participant in the fight for the cure, are important facets in a patient's diagnosis and treatment journey.
If you’re fighting colon or rectal cancer now, one important option you can pursue for yourself—and for others who will fight this disease after you, potentially including other members of your family—is to participate in clinical research. Research helps us understand the cancer, what caused it, and how it is different in younger people versus older. Understanding the “why and how” of colorectal cancer, especially in younger people, helps us to develop targeted treatments. We need to understand the relationship between the immune system and this cancer, particularly in younger patients, to determine how we can use immunotherapy to create a precise and personalized treatment approach. Finally, clinical research helps us to understand how we can prevent this cancer from occurring in the first place.
One of our currently enrolling clinical research studies is the ARGO study, sponsored by NSABP and conducted nationally, including Dr. Georges' University of Florida location. The ARGO study is for patients with colorectal cancer that is on the verge of curable vs. incurable. The individuals in this study have had an operation to remove the cancer, but are at a high risk (40%) for some undetectable cancer being left behind, because the cancer spread into the lymph nodes. The ARGO study tests whether an extended duration of a pill form of chemotherapy can be helpful to eradicate tiny bits of cancer that are left behind despite standard treatment.
This may not be very comforting to know, but if you’re a younger person with colorectal cancer, you’re in a group that continues to increase in number. This kind of cancer in younger people is on the rise. A recent study in the Journal of the National Cancer Institute documented a disturbing trend: the proportion of rectal cancer diagnosed in adults younger than 55 has doubled in just two decades, and one-third of all new cases of rectal cancer are diagnosed in individuals under 55. An individual born in 1990 has double the risk of colon cancer and quadruple the risk of rectal cancer compared to a similarly aged person born in 1950. This has major implications for your children, siblings and others.
This study highlights why research is so important: we need find out why this is happening. It also highlights the need to increase screening and prevention efforts. The authors of the study noted that “screening before age 50 should be reconsidered” and that “educational campaigns about the importance of timely follow-up of CRC [colorectal cancer] symptoms, regardless of patient age” are recommended.
We do not have the information at this point to know if the biology of the cancer in a younger patient is different than the biology of the cancer in an older patient. There is some data that suggests that it might be. What we do know is that younger patients with colorectal cancer are more likely to have a predisposing syndrome which supported the development of the cancer at a younger age. Often this younger group of people have a genetic syndrome (mismatch repair deficiency or a micro-satellite instability-high (MSI-H)) that makes them susceptible to this and other types of cancer.
The good news is that if you have a genetic syndrome like this, your cancer is much more likely to respond to immunotherapy. However, the bad news is that 85-95% of people with colorectal cancers do NOT have a syndrome. Therefore, they are not candidates for immunotherapy, because we have not determined a way to get the immune system to destroy colorectal cancer in people without this syndrome. Again, this is why participating in clinical research is crucial—it gives us answers and it gives us opportunities to expand our arsenal of treatments. In addition, it is important to educate yourself and talk to your oncologist about the possibility of using immunotherapy if your tumor tested positive for either mismatch repair deficiency or MSI-H.
Whether or not you have a predisposing syndrome, one thing you can do to improve your chances for a positive outcome are to make lifestyle changes. Even if you are a couch potato, losing some weight, adopting healthier eating and exercise habits, quitting smoking—every one of these things will benefit you in your fight.
Another thing you can do is use your voice and the voices of those who love you. Patient advocacy is one of the most valuable tools that we have in biomedical and cancer research. Cancer research and finding cures cost money. Biomedical research through the National Cancer Institute and National Institutes of Health addresses problems and looks for solutions that are not going to be supported solely by pharmaceutical or other private industries. Our elected leaders directly control the amount of funding and support (or lack thereof) for these programs. I can’t emphasize enough how important the patient voice is in this process. The scientists and the doctors can’t do this alone; we need partnership.
Finally, look around. Do you have any relatives or friends in the 30-50 year-old range who have digestive problems such as Inflammatory Bowel Disease, Crohn’s or colitis? Urge them to get tested for colorectal cancer. In my practice, I often hear stories from patients who had these issues and went their primary care physician or other health professional and it was dismissed because the patient was “too young for it to be cancer.” Primary care doctors need to be enlightened and encouraged to seek additional testing/screening for this group. Individuals with digestive problems or symptoms need to advocate for themselves and insist upon further screenings such as a colonoscopy.
Educate, participate, advocate. Having a diagnosis of colorectal cancer at any age is challenging and frightening, but there is tremendous hope. Educating yourself about your treatment options and your tumor status, participating in clinical research and using your voice to advocate for yourself and others are the most important things you can do to improve your own outcome and those of countless others.
Dr. Thomas George is an active clinical investigator and educator with a focus in GI malignancies. He is the principal investigator of the ARGO study on behalf of the NSABP. Dr. George is also the immediate past-chair and gubernatorial-appointee of the Florida Cancer Control and Research Advisory Council, which advises the state legislature, Department of Health, and state surgeon general on all cancer related matters and policy. As medical director of the GI Oncology Program at the University of Florida, Dr. George oversees the clinical research and treatment options for all patients with GI malignancies. You can follow Dr. George on Twitter: @TGeorgeMD.