Current data substantiates that colorectal cancer (CRC) is a real phenomenon and continues to increase in individuals younger than 50 years old. This is a serious concern. Clinical screening guidelines recommend that for average-risk adults, screening begins at age 50. The approach requires us to identify and resolve unique challenges facing colorectal cancer survivors under age 50. Early-onset colorectal cancer is a critical issue. We must act with urgency to understand how to reverse this trend.
Rising Rates Among the Under 50
In 2017, The American Cancer Society (ACS) investigators published in the Journal of the National Cancer Institute that (CRC) incidence rates are continuing to rise in young and middle-aged adults, including people in their early 50s. In addition, rectal cancer rates are increasing particularly fast, as 3 in 10 rectal cancer diagnoses are in patients younger than age 55.
ACS’s 2017 publication further builds on work published in JAMA Surgery:
“lifestyle and behavioral factors such as obesity, lack of physical activity and a Western diet are risk factors for CRC, but the exact causes of the predicted increases are not known.”
The rising rates in the under 50 stress the importance of the research.
Increases in “Under 50” Cases Predicted to Continue
Published in 2014, researchers at MD Anderson looked at Surveillance, Epidemiology, and End Results SEER program (on more than 393,000 patients with histologically confirmed CRC between 1975 and 2010) and made incidence rate predictions by 2030. The trends indicate that by 2030:
- 1 in 10 colon cancers will be diagnosed in people under 50
- 1 in 4 rectal cancers will be diagnosed in people under 50
Research is underway at several institutions across the country working to evaluate why this is happening, as well as identify patterns effecting patients under age 50 in order to better inform USPSTF screening guidelines. For those 50 years and older, studies are showing a steady decline in incidence due to screening efforts.
The Advocate Role in the Under 50 Issue
Advocate voices are critical for research and advocacy efforts. It may seem like a simple solution, but because the absolute rate of CRC in those under age 50 is lower than the older age group by 10 fold, it will require direct evidence of effectiveness of screening in those under age 50 in order to change the screening guidelines. We can help and support studies to establish this effectiveness but it will take time.
Multiple strategies are needed to effectively tackle the unique challenges facing the under 50 community:
As advocates, we must be committed to education. This means:
- Educating providers and medical professionals of the observed CRC rise specific to the under 50 population.
- Educating family members around the importance of sharing personal and family history with relatives.
- Increasing patient awareness in the under 50 population to know when to be screened based on family history and not to ignore other risk factors. Most importantly, many primary care physicians aren’t aware of this trend, and may not recognize the need for diagnostic tests when younger patients come in with signs and symptoms such as rectal bleeding, fatigue and bloating. Patients may need to advocate for themselves.
- For the average-risk population, talk to your health care professional about your family’s cancer history and CRC screening before age 40, and if you are at average risk, START screening, don’t delay.
Genetic Testing and Family History
We know that 20-30% of all colorectal cancer patients have a family history of CRC and 3-5% of patients have an inherited genetic syndrome, such as Lynch syndrome, familial adenomatous polyposis, MUTYH-associated polyposis, certain hamartomatous polyposis conditions or others.
In 2017, Medical Advisory Board member Heather Hampel of Ohio State worked on a study that found that 16% (1 out of every 6) of CRC patients diagnosed under the age of 50 carried an inherited susceptibility. Read more about the study and implications. The findings made researchers conclude that due to this high percentage, genetic counseling and multigene panel testing should be considered for ALL patients with early-onset CRC.
Genetic testing amongst young adults may also unlock new understanding to help explain why this is happening and help us better target early-onset CRC. Ongoing research efforts are looking at novel cancer genes, combinations of genes and the gene-environment interactions that may explain the rising incidence. Not only can this testing aid in prevention, treatment and follow-up surveillance for the patient but it can have a significant impact on the entire family.
For example, individuals who are found to have an inherited genetic mutation for colorectal cancer, who have not yet been diagnosed with colorectal cancer, are able to take measures to potentially prevent cancer or detect it early. Treating patients and their families with inherited syndromes is complex; however, having the knowledge of whether or not there is a mutated gene variant can help facilitate personalized treatment options.
Get help finding a genetic counselor.
The United States Preventive Services Task Force (USPSTF) makes CRC screening recommendations for average-risk patients. (Some of the same tools used to screen for colorectal cancer are those used for diagnostic procedures among patients presenting with symptoms.)
Those who set the guidelines identify potential harms for screening, which may outweigh the benefits and what is the best approach to preventive screening for the population as a whole. Research must answer the key question, “at what age do we reduce screening to provide optimal benefit and minimal risk*?”
It’s this question we must keep asking. As advocates, our role is to comment when the USPSTF solicits public feedback on guideline revisions and support further research that will provide a body of evidence needed to make any guideline changes. In the case of screening guidelines, we have to say vigilant. Early-onset CRC is important and we have to provide the USPSTF with our stories coupled with data for our advocacy efforts to be effective and for this committee to take notice!
* In 2016 the USPSTF concluded there is insufficient evidence to reduce the screening age. Changing the screening guidelines must be grounded in published research and research takes time and funding. We can’t pick an arbitrary age to reduce. Read our response to the 2016 Recommendations.
In the last three years, there has been robust research activity for immunotherapy clinical trials focusing on a subset of colorectal cancer patients. Some patients have tumors that are “Microsatellite Unstable” and classified as “MSI-High or MSI-H” colorectal cancer. This type of colorectal cancer comprises approximately 15% of sporadic CRC and most cases of colorectal cancer tied to Lynch syndrome. MSI-High is impacting many young adults. Studies have shown that MSI-H colorectal cancer responds well to certain treatment options, including immunotherapy – which is great news for some patients! Research efforts must continue to find treatments for all patients.
There continues to be an urgent need for clinical trial participation. Clinical trials will help us identify and understand additional biomarkers and genetic variants that may broaden the understanding of how to treat various types of colorectal cancer. This information will also help patients choose the best treatment options for them, and not fight cancer blindly.
With a rise in colorectal cancer in the under 50 population, there is a clear need to identify and address survivorship concerns that are unique to younger adults. This may include fertility preservation, psychosocial health, long-term side effect management, financial stress, surveillance and follow-up care. Accessing and understanding genetic counseling and testing is also essential to further screening tests, treatment options, disease surveillance and messaging to patients.
Colorectal cancer is a chronic condition requiring ongoing care and support. According to the Institute of Medicine’s report, From Cancer Patient to Cancer Survivor: Lost in Transition, cancer survivorship among adults has been neglected in research and as a result, neglected in clinical care.
There are over one million colorectal cancer survivors, many of whom fall into the under 50 group. Addressing survivorship care in research must become more robust and advanced in all age groups, including young colorectal cancer patients, to reduce subsequent health risks (such as secondary cancers or recurrence) and provide the opportunity to increase quality of life. Success in survivorship care will require the participation of both oncology and primary care providers, where we currently see a gap.
Fight CRC’s Role in the Under 50 Issue
We realize that the rise of cases in those under age 50 is a big issue. That’s why as an organization, we’re working with advocates, healthcare professionals and policymakers to address the issue. To make a meaningful change we must take a multifaceted approach, which includes convening experts and collaborating across disciplines and institutions.
Fight Colorectal Cancer is working through the following strategies to address early-age onset colorectal cancer:
Working with a Multidisciplinary Task Force
There is power when we put our heads together. That’s why we work with the experts. In summer 2017, Fight Colorectal Cancer began working with a multidisciplinary task force comprised of leading experts in the field of early- age onset colorectal cancer, or “under 50” cases. This task force is action oriented and informs our efforts, identifies gaps in the research and addresses specific challenges facing “under 50” patients; recognizing that there might even be differences in subpopulations of the larger young adult population.
Fight CRC, The American Cancer Society, Memorial Sloan Kettering in the United States and Erasmus University in the Netherlands authored the manuscript “Colorectal Cancer Screening Initiation before the age of 50 years: A Microsimulation Analysis” which was accepted into Cancer. Fight CRC and the task force group recognized the need to develop a modeling study that reassessed the age at which CRC screening should begin and end for the average risk population, discovering that a more appropriate age to begin screening is 45 years of age. This group informed the modeling studies that went into the new ACS guideline recommendations. The data tells us that early onset colorectal cancer is alive and well. What the data does not tell us is why. Fight CRC is working hard to understand the necessary steps to mitigate the increased incidence in young adults.
Collaborate across the CRC community
Addressing the challenges facing young CRC patients will take everyone working in colorectal cancer: healthcare providers, academics, survivors, caregivers, policymakers, advocacy organizations, community leaders – we all must work together. Fight Colorectal Cancer will lead a group willing to collaborate. We are stronger together and this issue is bigger than any one organization.
Contribute directly to under 50 research
Research drives everything from screening guidelines to treatment options and diagnostic tools. Fight Colorectal Cancer will continue to fund early-onset research as well as mobilize targeted advocacy efforts.
Support the Patient Voice
Fight CRC provides a place for patients to share their strength by sharing their stories. The One Million Strong community is made up of inspiring stories. Many who’ve shared have formed friendships. Many in our advocate community were diagnosed under age 50.
If you’re a patient or have been impacted by colorectal cancer under age 50, join us by sharing your story. You can also support the efforts of the early-age onset group with a generous donation. It will empower and inspire others.
Reliable Resources for the Under 50 Community
The following organizations, websites and programs can provide support to patients facing colorectal cancer under age 50.
- American Cancer Society
- Colon Cancer Challenge Foundation
- Colon Cancer Coalition
- Colon Club
- Critical Mass – Young Adult Cancer Alliance
- Dana-Farber YA Program
- Fertile Hope/ LiveSTRONG Fertility Program
- First Descents
- Lacuna Loft
- Lynch Syndrome International
- Michaels Mission
- Stupid Cancer