Home English Path to a Cure Report Path to a Cure Report Share on Facebook Share on LinkedIn Share on Twitter Copy this URL Share via Email download the full report The Path to a Cure report is a professional, multidisciplinary publication, which seeks to summarize and communicate a plan for our community to rally around: pushing forward critical areas of research; care for patients; and policy, from prevention to survivorship. The use of technical jargon and associated acronyms is avoided as much as possible. This report is not exhaustive and will be updated as our community takes critical steps forward. The Path to a Cure report is broken down into four sections: Biology and Etiology Prevention and Early Detection Treatment Survivorship and Recurrence Each section provides progress indicators, key messages, opportunities and challenges, and the voices of survivors. Each indicator has a plan of action to ensure that all our partners, collaborators, and champions know how they can play a role in contributing a path to a cure. Champion our Path to a Cure! By being a strategic partner, together we can show our policymakers the caliber of organizations vested in Path to a Cure efforts. Pledge your support Biology and Etiology Explore section one Key Messages Technical developments in cell and molecular biology, biochemistry, genetics, imaging, statistics, and bioinformatics have propelled colorectal cancer research forward, with recent findings and developments opening up new opportunities to further reduce the toll of this disease. It is now well-known that colorectal cancer emerges from mutations that accumulate within the genomes of normal cells that line the colon and rectum, eventually “hitting” critical genes that change their levels of expression and/or the structure of their encoded products. A very large number of genes contributing to colorectal cancer development have been identified over the years and remain a major focus of current research efforts. In many cases, we understand the role of these genes and how they regulate colorectal cancer. Every tumor is genetically unique. Genetic mutations (those that change the DNA sequence) and epigenetic mutations (those that do not change the DNA sequence) can lead to the development and progression of colorectal cancer. This can happen somatically, within the cells, or be inherited from family members. Lynch syndrome is the most common inherited condition. In the U.S., the burden of early-age onset colorectal cancer falls disproportionately on minorities and individuals in specific geographic regions, mirroring colorectal cancer disparities observed in older adults. Challenges and Opportunities Basic Biology It has been observed that over the past few decades, colorectal cancer incidence and mortality have risen in younger adults (those under age 50). This is in contrast to adults over 50, for whom colorectal cancer rates are decreasing. Data from ACS (see Figure 0.5) shows that those younger than age 50 have experienced a steady increase in incidence and mortality since the mid-90s, while those older than age 65 have experienced a decline. In people ages 50-64, declines have also been observed, though they appear to have leveled off more recently, due in all likelihood to younger adults moving into their 50s and 60s. Challenges We don’t know what is causing this increase in colorectal cancer in people under age 50. While there is emerging data and independent research, there is still not a cohesive understanding of why this is happening at such an alarming rate. With the discussion about early-age onset colorectal cancer in people under 50, data is starting to emerge that there may be differences among patients with colorectal cancer based on their ages. For example, colorectal cancer may not be presenting the same among adolescents as compared with people in their 40s or even people in their 20s. Opportunities As the data show an increased incidence of cancers in young people, the National Cancer Institute (NCI) and National Institutes of Health (NIH) in 2020 devoted resources for provocative research questions in understanding etiology and addressing the unexplained rising incidence in certain early-age onset disease, including colorectal cancer. The Department of Defense (DOD) and a number of advocacy and private foundations have begun to dedicate funding to further study etiology, particularly in those who are under 50 years old. Health Disparities Health equity means everyone has access to quality health care and can live a healthy life, regardless of race, ethnicity, sexual orientation, gender identity, disability, religion, and socioeconomic status. Colorectal cancer incidence and mortality rates are not uniform across race and ethnicity. Challenges Family colorectal cancer history is an established risk factor with an approximately two-fold increased risk among first-degree relatives with recommendations to begin screening at age 40. One in four early-age onset colorectal cancer patients who could have undergone earlier screening based on family history guidelines was not screened. Despite these observations about genetic contributions to early-age onset colorectal cancer patients, the fact that genetic risk factors do not change for a population over time suggests that the greater focus should be on generational differences in diet, lifestyle, or environmental risk factors. The relationship between health determinants is hard to unpack and addressing health disparities requires a multilevel approach. Opportunities To date, disparities by race/ethnicity and, to a lesser extent, geographic location in outcomes of early-age onset colorectal cancer suggest that biology/genetics, individual health behaviors, and access to and utilization of health services likely all have a role. Other social factors such as systemic racism, chronic stress, and neighborhood deprivation also deserve more rigorous investigation. Improving resources and coordinating efforts in communities where people of low socioeconomic status live and work would increase access to evidence-based interventions. Scientists have called out that we need to better understand the role diet, intestinal microbiome, and/or inflammation contribute to differences in colorectal carcinogenesis. Studies of large cohorts with diverse populations are needed to identify epidemiologic and molecular factors that contribute to colorectal cancer development in different populations. Hereditary The mutations that drive the appearance and progression of colorectal cancer can be genetic (i.e., involve DNA sequence changes) or epigenetic (i.e., do not involve changes in DNA sequence). Most occur somatically within specific cells of the intestinal lining; others may be inherited and passed on within families. Among the most common is Lynch syndrome, due to inherited changes (mutations) in genes that affect DNA mismatch repair, a process that fixes mistakes made when DNA is copied. These genes* normally protect you from getting certain cancers, but some mutations in these genes prevent them from working properly. It is also noted that nearly one in five individuals diagnosed with colorectal cancer under age 50 was found to carry a pathogenic variant in a cancer-related gene. *MLHL, MSH2, MSH6, PMS2, and EPCAM Challenges When looking at population-based testing, it is estimated that 95% of individuals with Lynch syndrome are not aware of their diagnosis. Current studies indicate that 16% (one out of every six) of colorectal cancer patients diagnosed under age 50 carried an inherited susceptibility. The inherited colorectal cancer syndromes are a series of diseases that have specific mutations that predispose a person to colorectal cancer. These are more aggressive and have a worse prognosis since they correlated with other tumors and some do not respond to chemotherapy. Early diagnosis is a challenge for physicians due to the absence of pathognomonic clinical findings. The Obama administration founded the Cancer Moonshotsm Blue Ribbon Panel. They recommended calling for a nationwide effort to do universal tumor screening for Lynch syndrome amongst all colorectal cancer patients. While there have been several Cancer Genetics grants and Moonshot grants awarded, to date, there hasn’t been a fully dedicated approach for researching Lynch syndrome. Opportunities A number of professional organizations have recommended universal tumor screening for all newly diagnosed colorectal cancer patients at the time of diagnosis. There is strong support for universal tumor screening for Lynch syndrome among colorectal cancer patients, including: Evaluation of Genetic Applications in Practice and Prevention (CD), Healthy People 2020, National Comprehensive Cancer Network, European Society of Medical Oncology, U.S. Multi-Society Task Force on Colorectal Cancer, American College of Gastroenterology, American Society of Clinical Oncology, and National Institute for Health and Care Excellence (UK). As a result of these findings, researchers have concluded that due to this high percentage, genetic counseling and multigene panel testing should be considered for ALL patients with early-age onset colorectal cancer, which is currently not widely implemented. There is a lot of opportunity to inform the metrics, accreditation, and policy for the genetic and hereditary landscape. Objectives and Strategies Objective 1 Further research the nature, biology, and implications of colorectal cancer, throughout the continuum of age (while also considering younger adults versus older adults). Understanding parameters, including stage, location, histopathology, and underlying genetic and molecular “drivers.” Strategies: Explore further themes of etiology of early-age onset colorectal cancer; looking beyond the known risk factors and applying the most recent research developments. Consider biology, risk exposure, and socioeconomic status in development. Create an index of common research and reporting metrics. Share common data and registry information. Support research to develop a stronger understanding of symptomatology and clinical presentation of patients. Objective 2 Research the role and impact of health disparities in those developing colorectal cancer, exploring factors such as biology and socioeconomic status; research to inform evidence-based interventions in areas of biology and healthcare policy. Strategies: Analyze existing and emerging “hot spots” for colorectal cancer incidence, particularly in younger groups to examine factors for increased incidence. Specifically analyze colorectal cancer tumor characteristics, such as anatomic location, somatic mutations, microsatellite instability, and epigenetics. Further understand the potential environmental risk factors for early-age onset colorectal cancer and how these could contribute to disparities by race/ethnicity. Explore possible policy and research strategies to inform evidence-based interventions in areas of biology and healthcare policy. Objective 3 Improve dissemination and implementation (D&I) (spreading the information and putting into practice) of evidence-based and population-based strategies for genetic and hereditary colorectal cancer, specifically Lynch syndrome. Strategies: Advocate for Commission on Cancer (CoC) to include multigene panel testing/universal testing measure for Lynch syndrome. Advance the Access to Genetic Counseling Services Act Center for Medicare and Medicaid services coverage for genetic counseling and testing, and possible alignment with the Cure 2.0 legislation. Collaborate with the President’s National Advisory Board to further engage initiatives promoted through the NCI Moonshot for further Blue Ribbon Panel recommendations. Further integrate screening for Lynch syndrome as a measure for the College of American Pathologists (CAP)/American Gastroenterological and The Merit-based Incentive Payment System (MIPS). Objective 4 Progress research and exploratory science to advance our knowledge of Lynch syndrome. Strategies: Prioritize vaccine research for Lynch syndrome. Further chemoprevention research for Lynch syndrome and other hereditary colorectal cancer syndromes. Prevention and Early Detection Explore Section Two Key Messages A number of factors have been shown to contribute to the risk of colorectal cancer. Factors that cannot be changed are older age, a personal or family history of colorectal cancer or colorectal polyps, a history of inflammatory bowel disease (IBD), inherited genes (e.g., Lynch syndrome), and racial/ethnic background. Factors that can be changed include lifestyle choices such as being overweight or obese, lack of physical activity, smoking, alcohol use, high dietary intake of red meats and sugars, and low intake of fruits and vegetables. Symptoms of colorectal cancer include a change in bowel habits (diarrhea, constipation), chronic rectal bleeding, cramping/abdominal pain, weakness and fatigue, and unintended weight loss. Screening is essential for early detection. Options for screening now include visual methods (colonoscopy, sigmoidoscopy, CT colonography) and stool-based (fecal occult blood test, fecal immunochemical tests, multi-targeted DNA test). It is still widely acknowledged that our greatest opportunity to prevent late-stage colorectal cancer is through preventive screening. Colorectal cancer is one of the only truly preventable forms of cancer. Colorectal cancer incidence and mortality rates also vary substantially by race and ethnicity. Among the five major racial/ethnic groups, rates are highest in non-Hispanic Blacks (hereinafter “Blacks”), followed closely by American Indians/Alaskan Natives, and lowest in Asian Americans/Pacific Islanders. Fewer than one-half of individuals who receive care at federally qualified health centers are up-to-date for screening. Challenges and Opportunities Increase in Screening of Average-Risk Population Dissemination of guidelines for the average-risk population for screening by organizations, such as the American Cancer Society, resulted in increased engagement of the population in preventive screening and led to marked reduction in disease incidence and mortality in older adults (i.e., those over age 50) In May 2021, the U.S. Preventive Services Task Force (USPSTF) officially lowered the recommended age of screening from 50 to 45, following extensive review of research, as well as recognition of the increasing incidence of colorectal cancer among young adults More than 40 million people in the U.S. are eligible for colorectal cancer screening. Challenges The national screening rate based on 2018 Behavioral Risk Factor Surveillance System (BRFSS) data is 67%-68%. This accounts for those ages 50 and over. In 2021 when the USPSTF reduced the screening age from 50 to 45, the eligible population increased by an estimated 60%, expanding the population of people who need to be screened from 27 million to 44 million. Compounding this challenge is the rapidly growing aging population. The diagnosed incident cases of colorectal cancer are expected to increase by an annual growth rate of 1.9% from 2018-2028. The multitude of modalities and options for screening differ with regard to advantages and disadvantages. While there is great opportunity in choice of options, the challenge is to keep the public and medical providers fully up-to-date, so as to foster their ability to make informed decisions as to which option is best for them. Which test to recommend continues to be controversial within the healthcare community. Debates continue to complicate public health efforts over colorectal cancer screening methods, age to start and to stop screening, and post-colonoscopy/polypectomy surveillance guidelines. Opportunities National and local efforts to bring awareness of the benefits of colonoscopy screenings have paid off: When people are screened, colorectal cancer is prevented or caught early. Screening saves lives. In December 2020, the Removing Barriers to Colorectal Cancer Screening Act of 2020, which waives co-insurance charges for average-risk colorectal cancer screening of Medicare beneficiaries, regardless of whether tissue is removed during the test, was passed. This Act will be phased in during an eight-year period beginning in 2022. Related to quality measures and incentives for providers to keep cancer prevention as a topic priority, two very important measures are in effect. The first is the Healthcare Effectiveness Data and Information Set (HEDIS), a tool used by more than 90% of America’s health plans and is a comprehensive set of standardized performance measures. The measure consists of members ages 50-75 who receive the appropriate screening for colorectal cancer The second is within Medicare: Colorectal cancer screening is also now a National Quality Strategy Domain: Effective Clinical Care. This measure is to be submitted once per performance period for patients seen during that period. This measure may be submitted by Merit-based Incentive Payment System eligible clinicians Integrating quality measures and incentives with key indicators and benchmarks for success have been proven to help ensure providers meet designated metrics. As a result, providers are more likely to recommend colorectal cancer screenings to their patients. The Centers for Disease Control and Prevention (CDC) currently funds the Colorectal Cancer Control Program (CRCCP) and is focused on increasing colorectal cancer screening rates in 35 states within the safety net and primary care clinics in reaching those patients who have the lowest screening rates. This is one of the largest investments in screening the medically underserved, and understanding and disseminating best practices. The Centers for Disease Control also has a variety of mechanisms in their funding portfolio to research implementation of colorectal cancer screening, as well as data repositories. Screening in Increased-Risk, High-Risk, and Symptomatic Patients Family History and Increased Risk Guidelines for those who are at increased and high-risk are well-established for colorectal cancer screening. The most common guidelines include U.S. Multi-Society Screening Guidelines, American College of Gastroenterology, and the American Gastroenterology Society. We have identified genetic and hereditary syndromes and risk factors that we know increase the likelihood of colorectal cancer. The lifetime risk of colorectal cancer in average-risk individuals is approximately 4.5% and approximately double in individuals with a positive family history. Familial colorectal cancer may have some component that is genetic in origin or may be an effect of shared environmental exposures. It is estimated that approximately 10% of the general population ages 30-70 years old have a first-degree family history affected by colorectal cancer and up to 30% will have a first-degree family member or second-degree relative with colorectal cancer. It is also well-established that Inflammatory Bowel Disease (IBD), including either ulcerative colitis or Crohn’s disease, also increases risk of colorectal cancer. Challenges Despite being at increased risk for colorectal cancer due to positive family history, first-degree relatives (FDR) are not always screened according to guidelines. One study found that 40% of individuals with a family history of colorectal cancer were screened appropriately according to the American Gastroenterological Association guidelines. (34) Other research suggests that 47% of individuals at increased risk for colorectal cancer (defined as a FDR diagnosed before age 55, or two relatives diagnosed with colorectal cancer) adhered to colorectal cancer screening guidelines. (34) Results of these studies indicate an opportunity to increase screening adherence among first-degree family members of colorectal cancer patients. This does not take into account advanced adenomas within families and the need for colonoscopy screening, which is another area of attention that could be addressed for the biggest potential in colorectal cancer prevention. (33) Opportunities The Affordable Care Act ensures coverage of any Grade B or higher USPSTF recommendation, which includes some genetic referral guidelines, cancer screening with no co-pays or co-insurance, and allows parents to keep their children on their plans until age 26 if the children are still in school. (12) Additionally, the Genetic Information Non-Discriminatory Act prevents health insurance and employment discrimination based on genetic test results or family history. (12) As colorectal cancer screening evolves and we continue to push forward, it will be critical that we find mutually beneficial partnerships that can produce groundbreaking research and innovation that solves complex problems, drives economic growth, and creates a more skilled workforce. Objectives and Strategies Objective 1 Improve dissemination and implementation (spreading the information and putting into practice) of the evidence-based colorectal cancer screening interventions for the average-risk population. Strategies: Advocate for stronger integration of preventive screening for comprehensive care for the average-risk population as a “default.” No longer recommending only colorectal, breast, cervical, lung, and other screening recommendations in isolation, by body parts, but rather recommending screening guidelines as a whole. Provide a dedicated approach to target-specific screening interventions and campaigns to reach communities with the lowest colorectal screening rates. Continue state and federal level policy work to remove out-of-pocket costs for colonoscopy following a positive noninvasive screening test. Advocate for a HEDIS measure that will ensure completion of follow-up colonoscopy for positive noninvasive tests and abnormal screening, denoting that preventive screening is not complete until a follow-up colonoscopy is completed. Create consumer-driven awareness by advocates with payers and policymakers. Objective 2 Improve dissemination and implementation of the evidence-based colorectal cancer screening for the increased, high-risk and symptomatic patients. Strategies: Increase the number of patients who have completed family history and referral for genetic and hereditary colorectal cancers, including family history of advanced adenomas, colorectal cancer, and other genetically linked cancers. Increase screening rates for those who have first-degree family members with hereditary and genetic adenomas, colorectal cancer, and other genetically linked cancers. Reduce stigma for patients who have signs and symptoms of colorectal cancer for more timely follow-up for colonoscopy. Objective 3 Further research and examination of colorectal cancer screening uptake for those younger than age 50 to reduce early-age onset colorectal cancer. Strategies: Research to help define common signs and symptoms to create a clinical screening tool to assess for potential colorectal cancer in those younger than age 50. Engage primary care associations and providers for greater awareness of issues related to work-up of signs and symptoms of colorectal cancer. Create awareness campaigns and strategies for consumers about the increase of colorectal cancer in people younger than age 50 and addressing stigma. Examine patient preference in specific screening modalities for the 45-50-year-old-age group in the average-risk population. Objective 4 Research minimally invasive strategies for preventive cancer screening, including analysis of blood, urine, and saliva (i.e., “liquid biopsies”); and examination of the oral and intestinal microbiome. Strategies: Define sensitivity and specificity based on patient needs and preferences. Determine common quality and clinical thresholds and standards for emerging technologies. Further engagement in ensuring patient accessibility. Treatment Explore Section Three Key Messages Approximately 85% of patients diagnosed with colorectal cancer have tumors that are microsatellite stable (MSS), which are predominantly treated with fluorouracil-based chemotherapy such as 5-FU, FOLFOX, FOLFIRI, or similar drugs. The most promising response rates vary a bit but range from approximately 38%-45%. The remaining 15% of patients diagnosed with colorectal cancer have tumors that are Microsatellite Instable (MSI-H). One of the most notable treatments is Pembrolizumab (humanized monoclonal antibody against PD-1 receptor), which in 2017 was approved for all MSI-H cancers, based on results from five clinical trials for different cancers. It was the U.S. Food and Drug Administration’s (FDA’s) first tissue/site-agnostic approval. Overall survival rates for late-stage colorectal cancer have not seen much improvement in the past decade, and stronger treatments and clinical trial improvement are imperative for progress. A 2020 study noted a strong association between geographic residence and early-age onset colorectal cancer stage and survival, finding rural residences and those living long distances from the treating hospital were associated with later stage diagnoses and lower survival. Challenges and Opportunities Accelerating Treatment Strategies Challenges Drugs like Pembrolizumab have been a breakthrough, with improved response and survival patterns compared to chemotherapy for patients with advanced mismatch repair-deficient/Microsatellite instable (dMMR/MSI-H) colorectal cancer, but have shown disappointing results in mismatch repair-proficient/Microsatellite stable (pMMR/MSS) colorectal cancer. While there is considerable support and discussion about focusing on utilization of circulating tumor DNA (ctDNA) and novel therapies in the adjuvant setting, biomarker-selected studies for mCRC and treatment of oligometastatic disease (limited metastatic disease), there is a sense of frustration about the lack of advancement of immunotherapy in MSS mCRC patients. Making progress in immunotherapy for MSS patients is specifically noted as an unmet need. But perhaps the most perplexing issue is that colorectal cancer is actually a very individualized disease and “bucketing”’ into colon, rectal, MSS/MSI, etc. is not specific enough to truly provide the types of treatments and therapies that will overall improve colorectal cancer survival. We must confront the reality that treatment for colorectal cancer has only seen incremental improvements. A paradigm shift in thinking about treatment is needed. The real challenge and issue is that despite the advancements in treatment, not enough gains have been made to create any real change in overall survival for late-stage disease in several decades. In order to see individualized treatment progress, there is an analysis suggesting that a clinical trial system that enrolls patients at a higher rate produces treatment advances at a faster rate and corresponding improvements in cancer population outcomes But there is a lot of work to do as we know that one in 20 adult patients with cancer enrolls in cancer clinical trials. Although barriers to trial participation have been the subject of frequent study, the rate of trial participation has not changed substantially over time. Barriers to trial participation are structural, clinical, and attitudinal, and they differ according to demographic and socioeconomic factors. Opportunities Oncology is at the vanguard of precision medicine: More than 160 oncology biomarkers were approved in 2019, and more than 90% of pivotal trials are against molecular targets. Breakthrough therapies like Pembrolizumab have been game-changers for MSI-H patients; there is considerable excitement about how these findings might apply to MSS patients to improve treatment strategies. In President Biden’s fiscal year 2022-Presidential Budget Request, a proposal was included for $6.5 billion to create the Advanced Research Project Agency for Health (ARPA-H) to “develop breakthroughs to prevent, detect, and treat diseases like Alzheimer’s, diabetes, and cancer.” The proposal seeks to address the fact that many bold, high-risk, high-reward ideas do not fit into the existing research structure either at the National Institutes of Health or within the work traditionally done by the private sector and instead create a dynamic organization centered around ensuring risk tolerance, urgency, nimbleness, and innovation. The goal is to speed the development and implementation of health breakthroughs—from the molecular to societal level—to serve all patients. Objectives and Strategies Objective 1 Increase clinical trial enrollment, particularly for late-stage disease, microsatellite stable, and early-age onset patients. Strategies: Collaboration with industry partners, healthcare systems, and advocacy groups to amplify education campaigns. Inclusion of social determinants of health equity and other cancer care delivery issues need to be addressed in design and outreach. Deliberate inclusion of patient advocates and patients in building clinical trials. Strengthen incentivization of patient recruitment into open trials across and throughout the U.S. and among institutions. Objective 2 Increase biomarkers and molecular testing (localized versus metastatic). Strategies: Develop provider and patient education campaigns. Strengthen alignment with quality and accreditation measures through National Comprehensive Cancer Network (NCCN) and Commission on Cancer. Objective 3 Design trials that are individualized-sequence therapies. Strategies: Integration of a multidisciplinary team for designs of next-generation trials. Better contextual understanding of tumor microenvironment and circulating tumor DNA (ctDNA) for trials. Implementation of clinical practice subgrouping by molecular phenotype and identifying ahead of time to preselect into clinical trials, RNA sequencing, and gene profiling. Optimization of treatment strategies supported by preclinical science, specifically in: Immunotherapy Microbiome Objective 4 Strengthen infrastructure design and development to advance treatment and clinical care. Strategies: Develop stronger tracking and review of outcomes for: MSS Immunotherapy and combination strategies. Informative failures. Pooling of rare responders for MSS trials. Strengthen pre-clinical/translational collaboration, creating better overall informative opportunities, identifying molecular targets, and more closely aligning clinical relevance. Support national/standardized biobanking, particularly for early-age onset colorectal cancer: Standard strategy and protocols for ascertainment. Routine access to samples among institutions. Establish an overall survival rate goal by 2023 with relevant and pertinent data. Objective 5 Increase federal funding for colorectal cancer research to achieve previously listed objectives. Strategies: Create a Colorectal Cancer Research Program within the DOD CDMRP. Ensure colorectal cancer is prioritized in the development and implementation of ARPA-H. Engage the National Cancer Institute around key areas of opportunity for colorectal cancer research to provide more dedicated dollars to colorectal cancer treatment and prevention. Survivorship and Recurrence Explore Section Four Key Messages There are over 1.5 million colorectal cancer survivors in the United States. The five-year survival rate for people with colorectal cancer is 65%. Considering caregivers is also part of survivorship. There is growing research and focus on the role and needs of caregivers. There is an opportunity to provide guidance and consensus on colorectal cancer survivorship standards. Part of the equation is delivery of care for virtual, telehealth, or in-person visits. Let’s have focused discussions on how to support the unique issues faced by young patients, late-stage patients, and those with specific tumor types and/or receiving specific types of targeted therapies. Our goal is for patients to live longer and enjoy their quality of life. To do this successfully, survivorship research efforts must elaborate and inform patients and their loved ones on the many issues relevant to long-term survival and risk of recurrence. Late-stage survivors struggle with fear of cancer recurrence/progression and feelings of powerlessness, sadness, or frustration from the life-changing effects of treatment and surgery. Challenges and Opportunities Survivorship Currently, there are over 1.5 million colorectal cancer survivors in the United States. The five-year survival rate for people with colorectal cancer is 65%. The term “survivorship” covers physical, psychological, social, and financial issues affecting patients during and after treatment. Our community of colorectal cancer survivors includes people with no disease, people who continue to receive treatment to reduce their risk, and those who manage a chronic but well-controlled disease with quality of life. It is incredibly important to recognize that colorectal cancer impacts families and entire communities of people. While there are wellness and medical guidelines for colorectal cancer patients after treatment is complete, gaps remain in who and how survivorship care is delivered. There is also variability from institution to institution about how survivorship care is delivered. The bottom line: Colorectal cancer survivors are often lost in the transition. “An individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life. Family members, friends, and caregivers are also impacted by the survivorship experience and are therefore included in this definition.” — National Cancer Institute Office of Cancer Survivorship (adapted from the National Coalition for Cancer Survivorship) We are devoted to understanding the etiologies of cancer and improving treatments. Yet to truly succeed in our effort to find a cure, we must seek opportunities to expand cancer research efforts to include data on survivorship through clinical trials, large cohort studies, cancer registries, and national surveys. We need to understand the unique needs of colorectal cancer survivors in order to build programs that will meet their needs and improve overall quality of life for our community. You are alive, but are you suffering? Challenges In late 2019, the American College of Surgeons Commission on Cancer (CoC) released Optimal Resources for Cancer Care: 2020 Standards for Cancer Program Accreditation. This was a big win for all survivors. (49) This policy set a standard to require the cancer program’s cancer committee to oversee the development and implementation of a survivorship program directed at meeting the needs of cancer patients treated with curative intent. (49) Today, there is a stronger focus on cancer survivorship and the needs of cancer patients; however, these interventions are often not reimbursed. Survivorship is an under-resourced area. To have a successful survivorship program, we must address the patient as a whole person. Easier said than done! Opportunities Based on the literature across all cancer types, we know treatment summaries (TS) and survivorship care plans (SCPs) are being implemented, but the data is mixed about their impact on improving patient outcomes. We know patients are riddled with challenges beyond treatment of their cancer. From mental health to nutrition, cancer patients face an avalanche of challenges, and there is a lot of thought and consideration on how to support patients in their survivorship journey. How can we develop research efforts that include a holistic approach to survivorship? There is an opportunity to provide guidance and consensus on colorectal cancer survivorship standards. Part of the equation is delivery of care for virtual, telehealth, or in-person visits. Let’s have focused discussions on how to support the unique issues faced by young patients, late-stage patients, and those with specific tumor types, and/or receiving specific types of targeted therapies. Colorectal cancer survivors are a diverse group facing long-term treatment side effects. Our research efforts should encourage and empower a proactive approach to support their overall health. From implementing survivorship care plans to unpacking the real-life experiences and quality of life of survivors, we can and should use this knowledge to inform future funding opportunities. Recurrence From surviving to thriving, you can’t help but think about recurrence. Approximately 30%–40% of patients develop recurrence following surgery, and 40%–50% of recurrences are apparent within the first few years after initial surgical resection. Recurrent disease usually presents as distant metastasis in the liver or lungs or as locoregional recurrence in the pelvis or peritoneum. The following are general statistics about the chance of recurrence: Stage I: <10% Stage II: 10%-15% Stage III: 25%-40% Stage IV: 50%-70% (after liver resection) Challenges Numerous studies have shown the clinical utility of ctDNA, a noninvasive biomarker which can predict minimal residual disease (MRD), and how it can help us stratify colorectal cancer patients who are more likely to relapse. However, what this means for guiding a patients’ treatment is still an active and important research question. The biggest questions are: Will patients treated with pre-surgical therapy, surgery, and post-surgical chemotherapy have additional treatments if there are signs of MRD? And how do we provide mental health support for those who do receive a positive ctDNA test? Research advances in this area are especially important for our metastatic and early-age onset patients. Individuals ages 25 years old and younger with colon cancer appeared to be at higher risk for relapse and death than older adults, according to data published in Journal of the American College of Surgeons. Opportunities ctDNA research is advancing rapidly, but are the study designs strong enough to change clinical practice? That’s what we are striving for. There is strong momentum to find clinical utility for these tests to help patients with a lower risk of recurrence avoid the side effects of additional treatment and those with a higher risk receive proactive care. There is great promise to use ctDNA tests with current standard monitoring guidelines in the early detection of recurrence, but it will only make a difference if patients have access to these advances. Our goal is for patients to live longer and enjoy their quality of life. To do this successfully, survivorship research efforts must elaborate and inform patients and their loved ones on the many issues relevant to long-term survival and risk of recurrence. Objectives and Strategies Objective 1 Development and research of survivorship care delivery intervention and approaches, which take into account the whole person—all of one’s health conditions and social conditions, not just one’s colorectal cancer. Strategies: Build consensus guidelines for Commission on Cancer survivorship recommendations for colorectal cancer survivorship taking into account the following key aspects: Integration of professional and evidence-based colorectal cancer survivorship guidelines in survivorship interventions; Improve ways to reduce suffering and mortality among survivors, and promoting return to life, work, and school; Focus on the needs of caregivers; Integrate evidence-based psychosocial services into standard of care; Enhance the education of survivors and all clinicians; Define quality measures for colorectal cancer survivorship care; Provide viable strategies that bridge care delivery with primary care and oncology care; Provide survivorship care that is sustainable, accessible, affordable, and equitable. Build models of care and integrate what is published, established, and known about the specific needs of the differing “types” of colorectal cancer patients. Include research advocates in designing and testing models of care delivery and approaches to risk stratification for colorectal cancer survivors that consider the whole person. Implement and develop quality measures for survivorship care. Increase the number of grants, dollar amounts, and grant mechanisms of PCORI, NCI, DOD, and CDC to fund colorectal cancer survivorship opportunities. Objective 2 Increase the capacity of healthcare delivery systems, primary care, public health, and the health workforce to bridge care needs of colorectal cancer patients post-treatment. Strategies: Focus specific strategies to educate primary care providers and help bridge care from oncologists to primary care providers for longer-term management of colorectal cancer survivors’ needs and prevent recurrence. Advocate with the CDC for supportive care and community-based services that must be purposefully developed for colorectal cancer survivors so they may continue their social, recreational, and vocational roles and functions in daily life. Explore methods of care delivery for virtual, telehealth, in-person, or other delivery of care mechanisms to specifically support the needs of colorectal cancer patients. Provide policy expertise to create sustainable patient navigation throughout the oncology care continuum, including into cancer survivorship. Objective 3 Expand research efforts to improve and advance development of emerging and new technologies for early detection, screening, and prevention of recurrence. Numerous studies have shown the clinical utility of ctDNA, a noninvasive biomarker which can predict minimal residual disease (MRD), and how it can help us stratify colorectal cancer patients who are more likely to relapse. However, what this means for guiding a patient’s treatment is still an active and important research question. The biggest questions are: Will patients treated with pre-surgical therapy, surgery, and post-surgical chemotherapy have additional treatments if there are signs of MRD? And how do we provide mental health support for those who do receive a positive ctDNA test? Research advances in this area are especially important for our metastatic and early-age onset patients. Individuals ages 25 years old and younger with colon cancer appeared to be at higher risk for relapse and death than older adults, according to data published in Journal of the American College of Surgeons. Strategies: Assess the ability and extent for ctDNA tests to guide treatment decisions and monitor for MRD and recurrence in colorectal cancer. Gather stronger data from patients to monitor recurrence, ctDNA, and the correlation with clinical outcomes. Identify high-risk patients with remaining microscopic disease, so that treatment and follow-ups can be tailored accordingly.