“It's Probably Just Hemorrhoids”: A Qualitative Exploration of the Lived Experiences and Perceptions of Long-term Survivors of Early-Onset Colorectal Cancer

Colorectal cancer diagnoses among adults aged under 50 years [early-onset colorectal cancer (EOCRC)] have steadily increased since the mid-1990s (1–3). In the United States, EOCRC incidence rates increased by 2.2% annually between 2007 and 2016 (4). Compared with patients with colorectal cancer diagnosed at age 50 years or older, patients with EOCRC are more likely to have advanced-stage disease at diagnosis (5). These findings have prompted efforts to better understand how to prevent EOCRC and promote early-detection screening in this younger at-risk population. In this paper, we use the term “EOCRC patient” to represent a person who has or had EOCRC regardless of current treatment status (6).

The lived experiences of patients with EOCRC have been understudied. A recent literature review concluded that, compared with patients who are diagnosed with colorectal cancer at age 50 or older, patients with EOCRC have significantly different psychosocial experiences (e.g., increased risk for financial distress and employment concerns, long-lasting physical symptoms, worse emotional distress, greater strain on personal relationships (7–13). Poorer self-image and sexual dysfunction are concerns experienced by patients with EOCRC that negatively affect their quality of life (7). Altogether, EOCRC patients’ experiences create psychologic burdens that warrant further study to identify effective means of support.

The published literature includes few qualitative studies focused on patients’ lived experiences after an EOCRC diagnosis (8, 10, 14, 15). These initial contributions to the knowledge base show the need for a more complete picture of the experiences of the EOCRC community. Much of this prior work relies on samples from distinct populations (e.g., advocacy groups) or specifically addresses female-centric issues or online community groups (10, 16, 17). Therefore, additional research investigating the psychosocial and lifestyle domains affected by EOCRC is warranted to expand the current understanding of the needs of this survivor community (7, 18). The current study explored through qualitative interviews the lived experiences and perceptions of a sample of adult long-term survivors of EOCRC living in the United States.

Eligible participants resided in the United States, were diagnosed with colorectal cancer when aged between 18 and 49 years, had a device with internet access and Zoom videoconference capabilities, and could read and speak English. Exclusion criteria included inability to provide informed consent. Our initial recruitment goal was 20 participants, as prior literature documents that 6 to 12 single interviews per homogeneous group are sufficient to reach qualitative data saturation (19). Our intent was to select a sample that reflected racial/ethnic, gender, and geographic diversity.

Participant recruitment occurred primarily through social media (e.g., Facebook, Instagram, LinkedIn, Twitter) between April and May 2022, using tailored flyers co-created with members of our EOCRC advocate survivor team (AST). In brief, these flyers included pictures of influential, diverse EOCRC survivor-advocates and their ages at diagnosis. The influential survivor-advocates also shared the flyers with their networks via their personal social media pages. Two versions of the flyer specifically targeted potential participants in Utah (the original aim of the study), while two other versions targeted the entire United States (ref. 20; see https://tinyurl.com/iBeatCRC-Phase-2 for the flyers employed). Interested individuals completed a brief survey that collected information such as current age, race/ethnicity, age at diagnosis, and state of residence.

Eligible individuals who expressed interest in participating in the study were invited to participate in a one-hour Zoom interview. On the basis of the availability of our interviewer (W. Johnson, a member of our EOCRC AST), those selected were invited by email to choose an interview timeslot. After 1 week, email nonresponders received a reminder phone call; if they still did not respond, another eligible and interested individual was selected and invited to participate. Of note, research team members had access to identifiable data only for the purpose of contacting potential participants for interviews.

Once interviews were scheduled in April and May of 2022, both interviewer and participant received a calendar invitation with a Zoom link for the scheduled interview time. One day before the interview, each participant received an email reminder that included links to a brief demographic survey and to the #iBeatCRC study website for more information about the study. Upon verification of completion of both the demographic survey and interview, each participant received a $30 gift card via the Giftogram platform.

The University of Utah's Institutional Review Board [IRB_00138357] approved the study protocol prior to data collection. Before interviews, study participants provided written informed consent. Interviews followed a 10-question structured interview guide developed with input from two AST members (W. Johnson, P. Gallagher), two research-team members (E. Brooks, M.A. De Vera), and the principal investigator (C.R. Rogers; Supplementary Table S1). Each interview was recorded on Zoom, professionally transcribed verbatim, and checked for accuracy by research staff prior to data analysis. A research team member (K.M. Korous or E. Brooks) served as a notetaker. The AST member asked the interview questions, while the notetaker started the recording, took notes, and pasted the questions into the chat throughout the conversation.

Data analysis was conducted between June and August 2022. The qualitative interview data were recorded, transcribed, and analyzed using an inductive approach to thematic analysis akin to Hatch's nine-step approach (21). Two study team members (K.M. Korous and E. Brooks), working with the first author (C.R. Rogers), analyzed the transcripts to code for themes using multiple-cycle coding and constant comparative data analysis methods (22, 23). The latter method permitted data disaggregation into discrete incidents or units that were then coded into categories (24). Initially the two team members each completed the coding procedure independently. They held weekly meetings with coauthor TNR to resolve disagreements, discuss emerging themes and subthemes, and make any necessary changes in coding logistics. For all interviews, new codes were developed until thematic saturation was reached. Overarching themes were identified on the basis of codes and were confirmed to be supported by transcript data. RStudio version 2022.07.1 (R version 4.2.1) was used to analyze descriptive interview–specific demographic data.

The data generated in this study may be available upon request from the corresponding author and with the permission of the Medical College of Wisconsin IRB.

Over 80 interested individuals completed the recruitment survey within three days after its launch, of whom 35 were invited to schedule an interview. Of those, 29 were scheduled, gave informed consent, and completed the Zoom interview. Two participant interviews were excluded from analysis because they diverged from the research protocol. In total, 27 participant interviews were included in the analysis. Interviews lasted no longer than 60 minutes.

Study participants resided across the United States, with more than half living in the southern (44.4%) or Midwestern (22.2%) regions. Most were women (66.6%) who self-identified as non-Hispanic White (85.2%). Participants’ mean age at interview was 40.19 ± 5.99 (range 28–53); at diagnosis, 33.93 ± 5.90 (range 26–44). Additional participant characteristics are presented in Table 1.

Six overarching themes emerged: signs and symptoms, risk factors, system-level factors, quality of life, social support, and reflection (Table 2). Within each overarching theme we identified two to three subthemes.

Participants reported signs and symptoms that initially led them to visit a health care provider and ultimately to their EOCRC diagnosis. These often included blood in the stool, abdominal pain or cramping, changes in bowel movements, and fatigue. Participants largely discussed these signs and symptoms in terms of diagnoses other than colorectal cancer. Two subthemes emerged:

The signs and symptoms they experienced led many participants to try to self-diagnose before seeing a provider. Participants reported thinking their signs and symptoms indicated hemorrhoids, ulcers, gallbladder stones, stomach infections, irritable bowel syndrome, ulcerative colitis, or celiac disease, or were related to diet. Some participants delayed seeing a provider because of their self-misdiagnosis.

Participants said providers often offered a diagnosis other than colorectal cancer, such as hemorrhoids, gallbladder stones, or celiac disease, and that this misdiagnosis delayed their colorectal cancer screening.

Some participants said their misdiagnosis was attributed to their age or other characteristics.

The interviewer read a list of colorectal cancer risk factors from the American Cancer Society and asked participants about their experience with these factors. Their responses were largely captured by three subthemes:

Participants with a known family history of colorectal cancer were aware that this increased their risk.

However, not all participants knew they had a family history of colorectal cancer prior to their diagnosis. Some attributed this to colorectal cancer not being discussed in their families. Others were unaware that colorectal cancer could affect younger populations.

Some participants said they fit some lifestyle-related colorectal cancer risk factors (e.g., moderate to heavy alcohol use, diet high in red and processed meats, overweight).

Participants expressed feelings of blame or defensiveness regarding whether their lifestyle led to their EOCRC diagnosis. Some said they felt this way because they had no lifestyle-related risk factors. Others noted that people without EOCRC often have the same risk factors.

Comments relevant to this theme often related to whether participants’ providers recommended colorectal cancer screening or seeing a specialist, their experiences navigating care, or their thoughts about their interaction with medical workers before and after their diagnosis. Three subthemes emerged:

Participants frequently said their providers did not recommend a colorectal cancer screening test other than colonoscopy; participants were seldom given stool-based colorectal cancer tests.

Participants expressed appreciation when their initial provider referred them to a specialist.

Participants identified barriers related to navigating their medical care and the pace at which their treatment progressed.

One participant reporting feeling their care was delayed due to racial/ethnic bias.

Other participants said that from diagnosis to treatment “everything…happened in a very short span of time.”

Many participants described positive perceptions of their nurses or medical teams.

Others reported negative perceptions based on their initial treatment.

Some participants described experiencing discrimination based on age, gender, or race/ethnicity.

Participants were asked whether medical workers recommended ways to address colorectal cancer treatment–related quality-of-life issues, including fertility, sexual health, and mental health. Their responses were largely captured by the following three subthemes:

Both female and male participants said providers seldom recommended ways to address posttreatment fertility or sexual health issues.

Participants expressed mental health concerns and pursued therapy. Some described experiencing heightened anxiety.

Some participants said their medical team did not recommend ways to address their mental health issues.

Participants often emphasized self-advocacy or the need to put their quality of life before their medical team's decisions.

Support groups and family, friends, and others emerged as subthemes of this theme. Participants often found support groups through social media platforms such as Facebook, and sometimes through their treatment center or community (e.g., church).

Participants said they found the most social support in interactions with other colorectal cancer survivors.

Participants described receiving support from family, friends, and other important people (including the medical team). Several participants credited their spouses.

Family, friends, and other important people often provide instrumental support, such as help related to treatment or day-to-day activities.

Some participants described social support in terms of connections with people who could help them obtain the best care.

The final overarching theme emerged from participants’ reflections on the advice they would have given themselves five years before their diagnosis. Three subthemes emerged:

Many participants reflected on lifestyle behaviors that increased their colorectal cancer risk. Several participants expressed concern about having overlooked symptoms. Some discussed prevention strategies.

Experiencing colorectal cancer led many participants to reconsider what was important in life.

Participants also expressed future-oriented reflections.

Some participants said they would not change anything.

One participant stated that their life improved.

Participants frequently expressed wanting to increase awareness of EOCRC and help others avoid similar experiences.

We examined the lived experiences and perceptions of adult EOCRC survivors living in the United States. Two unique aspects of our study design were recruiting participants via tailored marketing materials that included pictures of influential EOCRC survivor advocates and their age at diagnosis and having a member of our EOCRC AST lead the interviews. Our study is also novel in that it targeted a national sample, in contrast to most previous qualitative studies that either relied on samples from distinct populations such as advocacy groups or specifically addressed female-centric issues or online community groups. Our approach of involving survivor advocates from recruitment to data collection and dissemination enriches our study of the lived experiences of EOCRC survivors and permitted our recruitment efforts to be far-reaching across the United States.

We identified six overarching themes, each with two to three subthemes. Our findings within these themes and subthemes can inform comprehensive care for patients with EOCRC (25, 26).

This theme captured an important aspect of patients’ cancer trajectory, as signs and symptoms are key to identifying and diagnosing EOCRC. Reported signs and symptoms such as blood in stool, abdominal pain or cramping, and changes to bowel movements are consistent with findings from both prior qualitative studies and more recent quantitative research (10). The provider misdiagnosis subtheme (also recently identified by Araujo and colleagues; ref. 27) has not been previously described. We also identified a self-misdiagnosis subtheme that implied participants who misdiagnosed themselves delayed seeking care, particularly for colorectal cancer screening. These findings highlight a need for EOCRC-related education targeted to both providers and the public.

Participants reported the extent to which known colorectal cancer risk factors applied to their experience, but said these factors were not key determinants of their diagnosis. Although family history was the most frequently reported risk factor, not all participants were aware of their family history of colorectal cancer. Future interventions should include more dialogue about colorectal cancer family history, and clinicians should emphasize the importance of informing family members about a colorectal cancer diagnosis.

Participants were defensive about lifestyle risk factors such as alcohol consumption or diet. Several did not have such risk factors and still developed colorectal cancer or had risk factors, but knew people with the same risk factors who did not develop colorectal cancer. Etiologic studies have reported the occurrence of EOCRC in individuals with and without clear risk factors (1). Heterogeneity in EOCRC etiology limits prevention efforts and potentially decreases public acceptance of colorectal cancer risk factors. Future research should investigate EOCRC risk factors, exposure timing, and public perceptions and risk definitions related to EOCRC (28, 29).

Three subthemes of this overarching theme emerged: provider recommendations, navigating care/pace of treatment, and perceptions of medical workers. The major reason why people do not seek colorectal cancer screening is lack of a provider recommendation to do so (30, 31). Study participants noted this barrier and a lack of shared decision-making and explanation of screening options, underscoring the need for provider education and uniform screening programs that reduce provider variability and improve health equity.

Participants perceived navigating the health system as a barrier. The use of patient navigators trained to help patients navigate the screening, diagnosis, and treatment continuum has been found to be the single most effective intervention to ensure timely colorectal cancer screening completion (32, 33). Yet while participants were generally appreciative of their care team, many also reported frustration due to a lack of help with navigation.

This theme highlights the significant impacts of EOCRC on reproductive, sexual, and mental health. EOCRC strikes during the reproductive years and treatments such as surgery, radiation, and chemotherapy impair fertility; however, both female and male participants reported that reproductive and sexual health considerations were frequently not addressed. The unmet need for sexual health information may stem from the lack of resources tailored to the EOCRC population. A 2022 multi-method online survey of reproductive health experiences among female patients with EOCRC revealed similar gaps in care, including a lack of discussion between patients and providers about reproductive and sexual health (34). Also in 2022, an online survey of female and male young adult patients with rectal cancer on their experiences with fertility preservation reported a lack of discussion of this issue by doctors and low rates of fertility preservation (e.g., sperm banking among males, egg/embryo banking among females; ref. 35). Our current study builds on these prior studies by including both males and females across the entire spectrum of EOCRC, highlighting fertility preservation as an unmet need for patients with EOCRC. Nevertheless, a more all-encompassing national survey is warranted that further investigates these factors as well as others identified in our study.

Recent population studies in the United States have shown an increased risk of anxiety and depression after a colorectal cancer diagnosis (36, 37). Our identified mental health subtheme adds a patient perspective to such quantitative studies and, along with the self-advocacy subtheme, identifies gaps in EOCRC care. Prior studies have reported patients’ perspectives on self-advocacy in relation to earlier EOCRC diagnosis and access to treatment; our findings also highlight the significance of self-advocacy in addressing colorectal cancer's impacts beyond physical health (10).

Participants found high value in both support groups and normative support. Social support has been shown to improve resilience and quality of life, and is associated with reductions in anxiety and depression across age, race, and ethnicity (38, 39), as well as improved outcomes and overall survival (38–40). Medical providers and future researchers should assess the social support available to patients with EOCRC, encourage the development of support networks, and guide patients to sources of peer support (e.g., colorectal cancer Change, The Colon Club, Man Up to Cancer). Sources of support may be a particularly important consideration for patients with EOCRC given their younger age. A previous survey of patients with colorectal cancer showed that those diagnosed before 50 years of age (i.e., with EOCRC) were more likely to use the Internet for cancer information and support than those diagnosed at age 50 years or older (41).

EOCRC diagnosis and treatment increased participants’ awareness of colorectal cancer risk factors and symptoms, leading them to reflect on risk factors they might have reduced, signs and symptoms they might have missed, and family history they wished they had known more about. This finding is worthy of further exploration as it may have significant implications for educating the public and raising awareness through educational resources tailored to younger populations and focused on EOCRC risk factors, screening benefits, and postoperative care (42, 43). Also, given our participants’ passion for advocacy, EOCRC survivors may be instrumental in informing patient navigation, survivorship care, research studies, and interventions.

Finally, participants described experiencing positive changes following their EOCRC diagnosis, such as developing new perspectives on life priorities and new connections with community members and organizations. The psychosocial needs of patients with EOCRC should be emphasized during treatment and throughout survivorship (25). Moreover, given the importance of sexual and reproductive health concerns to study participants, care provided immediately post-diagnosis—along with discussion of fertility-preservation options—is just as important as meeting EOCRC patients’ psychosocial needs.

Our study has several strengths; however, some limitations are worth noting. First, because our recruitment (e.g., social media) and data collection (e.g., interviews via Zoom) methods were primarily internet-based, study participants represented a population with both internet access and literacy. For this reason and because our sample consisted predominantly of women self-identifying as Non-Hispanic White and of long-term survivors who had internet access, our findings may not be generalizable to other subgroups of EOCRC survivors. However, Non-Hispanic White adults have seen the largest percentage increase in EOCRC, while incidence rates of EOCRC in people younger than 45 years are comparable for men and women (3, 44). Although our efforts to recruit a sample that reflected racial/ethnic and gender diversity fell short, we did meet our goal of capturing a geographically diverse sample. As no studies to date have been successful in systematically and qualitatively addressing EOCRC-related experiences specific to racial/ethnic subgroups, future research in this area is urgently needed.

Second, the EOCRC survivor who moderated the interviews occasionally diverged from the research protocol by sharing opinions that may have influenced participants’ responses. Because moderator bias is a known challenge associated with focus groups, our analysis team (K.M. Korous, E. Brooks, T.N. Rogers) thoroughly reviewed all transcripts during coding and, to ensure unbiased data extraction, collectively decided to exclude two conflicting interviews from analysis (45).

Finally, our study was not designed to allow inferences about a directional relationship between identified themes (e.g., whether system-level experiences caused reflections) or whether these themes were unique to EOCRC survivors as compared with patients with colorectal cancer diagnosed at age 50 years or older. However, our study's rigor and innovation resulted in instrumental insights for future research focused on increasing EOCRC awareness and patient advocacy efforts.

The alarming rise of colorectal cancer diagnoses among people aged under 50 years is a persistent public health emergency that has been documented since the mid-1990s. Our study highlights the importance of considering the lived experiences and perceptions of EOCRC survivors both in future interventions targeting this population and throughout survivorship, while also educating healthcare providers and the public about the increasing risk of EOCRC and destigmatizing conversations about bowel and gut health. Given the unique association of EOCRC diagnosis with lifestyle changes and psychosocial challenges, as shown in our study, patients must be agents in their care throughout the continuum from diagnosis to treatment to survivorship.

C.R. Rogers reports personal fees from Exact Sciences outside the submitted work. No disclosures were reported by the other authors.

The content is solely the responsibility of the authors and does not necessarily represent the official views of any of the funders.

C.R. Rogers: Conceptualization, resources, data curation, supervision, funding acquisition, validation, investigation, methodology, writing–original draft, project administration. K.M. Korous: Formal analysis, validation, writing–original draft, writing–review and editing. M.A. De Vera: Conceptualization, validation, investigation, methodology, writing–original draft, writing–review and editing. A. Shaukat: Writing–original draft, writing–review and editing. E. Brooks: Data curation, formal analysis, validation, investigation, methodology, writing–original draft, writing–review and editing. K.K. Rifelj: Writing–original draft, writing–review and editing. C. Henley: Validation, investigation, writing–original draft, writing–review and editing. W. Johnson: Formal analysis, validation, investigation, writing–original draft, writing–review and editing. T.N. Rogers: Conceptualization, formal analysis, supervision, validation, investigation, methodology, writing–original draft, writing–review and editing.

The authors extend their gratitude to the participants who made the study possible, to Phuong Gallagher, Walter Hickman, Curt Pesmen, and Allison Rosen for marketing support, and to Eleanor Mayfield, ELS, for editorial support. This research—led by C.R. Rogers who received all funding—was supported by the V Foundation for Cancer Research, 5 For the Fight, the Medical College of Wisconsin, Huntsman Cancer Institute, and the NCI (Grant K01CA234319), an entity of the NIH.

The publication costs of this article were defrayed in part by the payment of publication fees. Therefore, and solely to indicate this fact, this article is hereby marked “advertisement” in accordance with 18 USC section 1734.