While a diagnosis of cancer at any point in one’s life is a significant physical and emotional event, it is uniquely challenging in the young adult population. Individuals in their 20s and 30s are going through social and emotional developments that define their adult lives, such as entering the workforce and establishing intimate relationships. As a result, they are particularly vulnerable to the disruptive effects of cancer and its treatment.

Colorectal cancer (CRC) is associated with significant physical symptom burden that can affect patients’ quality of life including bowel dysfunction, urinary symptoms, sexual dysfunction, and pain. Treatments for CRC also carry substantial toxicities. These physical symptoms as well as other stressors of cancer diagnosis and treatment intertwine with numerous lifestyle changes that impact the quality of life in young adults. Education or work life can be significantly disrupted by cancer symptoms or treatment schedules, which can have implications for future career and financial trajectories. In addition, there is a financial burden of treatment in terms of costs of treatment, loss of income during therapy, insurance costs in the present and future due to “pre-existing conditions,” and potential limitations in future earning potential and career advancement due to the need to take medical leave from school and work. Furthermore, diagnosis and treatment of CRC in younger patients often disrupts family dynamics and interpersonal relationships. Given all these concerns, it is imperative for healthcare providers to keep these issues in mind when caring for young adult patients. This review will explore the quality of life and psychosocial concerns that may disproportionately affect young-onset (YO) CRC patients.

Symptoms that commonly occur with CRC include abdominal pain, diarrhea, rectal bleeding, and iron deficiency anemia.1 Surgery and radiation (used commonly for rectal cancer but rarely for colon cancer) can lead to problems with gastrointestinal (GI), urinary, and sexual functions both acutely during treatment and chronically for life.2 These dysfunctions most commonly arise from autonomic nerve injury.3 Low anterior resection (LAR) syndrome, a form of GI dysfunction, is also due in part to loss of rectal capacitance after proctectomy.2 Pelvic radiation additionally contributes to functional issues due to inflammation and fibrosis in the treated field.4, 5, 6 Long-term GI dysfunction is exacerbated when radiation and surgery are both required.7 GI dysfunction can include frequent bowel movements, urgency, loose stools, and incontinence to gas or stool. It is one of the most commonly reported issues for patients treated for cancers in colon and rectum.8 Issues with urination can manifest as urgency, incontinence, or retention.3 Sexual dysfunction in men may present as retrograde ejaculation and erectile dysfunction, whereas in women it can present with vaginal dryness and dyspareunia.3,9 Loss of sexual drive can also occur for all patients.

In addition to surgery and/or radiation, many CRC patients will require systemic chemotherapy as a part of their treatment regimen. Side effects of chemotherapy can be broad including fatigue, GI toxicities such as nausea/vomiting and diarrhea, neutropenia, infections, and peripheral neuropathy.10 While these symptoms are most acute during and immediately after treatment, the neuropathy, in particular, can become permanent. Some medications can also negatively affect sexual function. Fluoropyrimidines (such as 5-fluorouracil) typically do not have a significant effect on sexual function, but the peripheral neuropathy associated with oxaliplatin, used commonly in the adjuvant FOLFOX regimen, can impact sexual function. In addition, oxaliplatin has a gonadotoxic effect, particularly in women.11 Issues surrounding fertility for YO-CRC are important and addressed in a separate chapter.

Bowel and urinary dysfunction can negatively affect body image leading to substantial social isolation and psychosocial concerns.12, 13, 14 While this is true in older patients as well, it is particularly relevant in the young adult population who are at an age when individuals are forming lifelong relationships, seeking a spouse, and establishing their place in a community. Younger patients also have better baseline functional status and likely have different expectations in functional outcomes compared to older patients.

Not surprisingly, a single-institution cross-sectional study of long-term survivors of CRC demonstrated worse body image and embarrassment related to bowel movements in YO-CRC patients compared to average-onset (AO) CRC patients. The older patients on the other hand were more likely to highlight problems with micturition.15 YO-CRC patients also reported abdominal and pelvic pain, bloating, and hair loss more frequently. In another multicenter observational study, 17% of YO-CRC patients who underwent surgery for rectal cancer reported significant GI symptoms, and 7% had urinary symptoms including urgency or need for self-catheterization.16 The use of perioperative stomas has also been shown to strongly and negatively impact body image, even if they are used temporarily and reversed.17 This impact has been shown to be long-term, extending well beyond the stoma reversal period.18 In addition, young adults (<40 years old) with GI tract cancers frequently report impairments in coping abilities.19

The ColoCare study was an international, multicenter prospective cohort study with multiple goals including the investigation of treatment toxicities and health-related quality of life.20 Patients were enrolled in the study shortly after their cancer diagnosis, and data were collected at 3, 6, and 12 months after diagnosis. A subsequent analysis focused on comparing multiple functional realms and quality of life in young adults (age 18-39) to older adults (40-49, 50-64, and ≥65 groups).21 The study found that young adult CRC patients experienced significant dysfunction across multiple domains such as physical, social, emotional, and cognitive functions as well as worse global quality of life. Of note, young adults reported worse physical dysfunction than the other age groups at different time points after CRC diagnosis but better physical function at baseline, which may exaggerate the physical dysfunction experienced by these patients. The other domain where young adult patients reported particularly worse performance than the other age groups was social dysfunction.

Impaired physical and social functions related to GI dysfunction can have far-reaching outcomes including financial toxicity, which has been recognized to have a negative impact on health outcomes.21 Two different multi-institutional studies demonstrated that LAR syndrome was associated with worse functional scores across multiple domains and specifically led to worse fatigue and more financial difficulties,22,23 highlighting the complex relationship between GI function, physical and social impairment, and the potential for worse overall disease outcomes.

Sexual dysfunction from treatment of CRC can also significantly affect young adults, as finding a partner and starting or growing a family are at the forefront of the minds of many of these patients. A multicenter observational study showed that 6% of rectal cancer patients under 50 years of age experienced sexual dysfunction at 3-year follow-up after surgery.16 This included decreased sexual drive, dyspareunia, and erectile dysfunction. In a different single-institution cross-sectional study,15 AO-CRC patients were more likely to have a lower functional score for sexual function, but a higher proportion of YO-CRC patients reported more significant male and female sexual dysfunction.

Young cancer patients are more likely to be in stages of their career where they are still working their way up in the corporate ladder, paying student loans, building a savings account, and contributing towards their children’s tuitions and their own retirement funds. An unexpected diagnosis of cancer can have a negative impact on their finances by adding unforeseen healthcare costs. A review of the 2011 Medical Expenditure Panel Survey (MEPS) Experiences with Cancer survey showed significantly higher incidence of material (e.g., unable to pay medical bills) and psychological (e.g., worrying about paying medical bills) financial hardships in younger patients with cancer,24 although this study applied an age cutoff of 65 years given the differences in employment and insurance coverage at this age. The younger age group (18 to 54) did have a higher proportion of material financial hardship with cancer, as well as a higher proportion of individuals who needed to take time off from work or switch to part-time employment. On the other hand, lower family income and uninsured status, but not age, were associated with a higher proportion of psychological financial hardship. Another study using National Health Interview Survey (NHIS) from 2013 to 2016 also found that younger cancer patients report behavioral financial hardships such as delaying medical care or forgoing medical care altogether,25 underscoring the significant negative impact that financial toxicity can have on clinical outcomes.

Discussions with fourteen survivors of YO-CRC in a qualitative study raised specific concerns regarding career trajectory, lost income and setbacks in earning potential, inadequate health insurance, and decreased task performance.26 642 responders with CRC in the NHIS between 2019 and 2021 reported higher composite financial toxicity scores compared to 642 age-matched non-cancer patients, and YO-CRC was an independent risk factor for financial toxicity.27 YO-CRC patients also reported higher rates of food insecurity as well as delaying medical care and delaying filling prescriptions due to costs compared to AO-CRC patients.

A registry-based cohort study from the Dutch Occupational Health Service registry showed that the median time to full return to work after curative-intent treatment for CRC was 423 days, with only 67.5% patients returning to work by 2 years and 26.5% patients never returning to work.28 At 1 year, adjuvant therapy, presence of stoma, and emotional distress led to lower likelihood of returning to work. There was also a trend toward decreased likelihood of going back to work for patients who experienced postoperative complications. At 2 years, presence of metastases, emotional distress, and postoperative complications were associated with lower odds of return to work. There was a trend for lower likelihood of return to work with larger company size of the employer. Interestingly, direct return to work as opposed to phased return led to higher likelihood of return at 2 years. Another survey of 202 patients who were diagnosed with CRC across the ColoCare study sites demonstrated that 83% of patients diagnosed before the age of 65 were working and that 76% of patients continued to work after their diagnosis.29 Those under 50 years of age reported more difficulties with mental and physical tasks at work, and patients under the age of 65 were more likely to report financial hardships.

Demonstrating the universality of the issue around the world, a study from China of 250 patients with CRC showed higher financial toxicity in younger patients as well as those who are unemployed, have lower household income, and have lower level of social support.30 Similarly, a study from the Netherlands, including 12,007 patients with CRC from the Netherlands Cancer Registry, reported increased risk of loss of paid employment in patients with cancer. The risk was highest for younger patients, those with more advanced disease, and those receiving radiation therapy.31

The effects of young-onset cancers on family dynamics are harder to quantify, but YO-CRC is likely to disrupt normal family dynamics. Depending on the age of diagnosis, patients may have additional stressors from having young children and coping with juggling childcare with treatment. They face the stressors of explaining their illness to their children.32 YO-CRC patients also likely have partners who are actively working while supporting their families. In addition, many of the YO-CRC patients may be helping their elderly parents with medical problems. Conversely, there may be the added pressure of needing to depend on their aging parents as caregivers.

In a survey of 15 patients or partners of patients who were diagnosed with cancer (3 rectal cancer patients) and had children between the ages of 8 and 25 in Australia, there was frequent report of changes in daily routines and adjusting to new roles.33 It was also reported that open communications between patients and their partners and children had positive effects, whereas avoidance of certain topics such as their cancer diagnoses led to distress, anxiety, and a sense of isolation. The ability to rely on others, such as their own parents and schoolteachers, had a positive impact, and the willingness to rely on others helped with family functioning.

Another survey of 194 cancer patients (15% with GI cancers) in the U.S. demonstrated a decline in parenting and co-parenting efficacy scores which was correlated with more medical visits and recent receipt of intravenous chemotherapy.34 Decline in parenting efficacy was correlated with greater concern regarding emotional distress of their children. A retrospective survey of 50 young adults with GI cancers from Israel also reported increased difficulty coping with children during cancer treatment, but not after.19 A study of 699 female patients with breast cancer between ages of 20 and 45 in South Korea demonstrated that patients with children were more likely to have depression, which was correlated with parenting stress.35 Lastly, younger patients with lung cancer or CRC in the Cancer Care Outcomes Research and Surveillance Consortium were more likely to report concerns regarding time away from family.36 Younger patients were more likely to have dependent children at home, and worries about time away from family or cancer treatment were associated with having dependent children.

For YO-CRC patients, their parents may become informal caregivers which may lead to a role reversal, thereby causing stress. Depending on the age of onset, some parents of younger cancer patients may also be caregivers for their own parents who are sick. While there are no data examining the implications of this role reversal between younger cancer patients and their aging parents, there are some qualitative studies exploring the stressors placed on parents who become caregivers to their adult children with cancer. A literature review of 32 qualitative, cross-sectional, and mixed-method studies reported numerous challenges faced by parent caregivers of YO cancer patients, such as physical and psychological symptoms (fatigue, fear), social isolation, financial burdens, and trying to figure out their roles in helping manage their children’s disease.37 A focus group specifically for YO-CRC, which included 8 patients, 7 caregivers, and 5 bereaved caregivers, also reported that caregivers felt overwhelmed and isolated.32

YO-CRC patients may also feel isolation from their peers. Patients have reported feeling alone at medical appointments as most other cancer patients are older.32 And while patients desire space and support to work through cancer-related stressors, some may feel that it is difficult to dedicate time to participate as they have other obligations.

A systematic summary of qualitative studies on adolescent and young adult (AYA) cancer survivors revealed a theme of social interaction, and one of the challenges reported was maintaining companionship or friendship, but paradoxically, the importance of social support as a protective factor was highlighted.38 In a prospective multicenter survey, AYA patients with CRC reported more interference with general activity due to symptoms and relationship with others.39 A single-institution survey of long-term survivors showed that YO-CRC survivors reported more anxiety, worse body image, and more embarrassment regarding bowel movements compared to older patients,15 which may at least partially explain some of the social isolation. Another qualitative study of AYA cancer patients in England redemonstrated the theme of anxiety and isolation from their partners and friends.40 However, those who sought professional help or were otherwise able to communicate their anxiety reported improved emotional distress during and after treatment, further supporting the repeated theme that increased communication lessened anxiety and stress.

Most young cancer patients are caught by surprise with their cancer diagnoses and may have difficulty navigating the health care system. A survey of patients and caregivers revealed a theme of feeling overwhelmed with oncologic care.26,32 They reported being uncertain to whom they should direct their questions, where to show up for appointments, and how to navigate health insurance. There was interest in patient navigators, a point of contact who can answer non-medical questions as well as assist with appointments and other relevant lab or imaging orders.

Patients with YO-CRC have similar cancer outcomes compared to patients with AO-CRC,41,42 but fear of recurrence or progression may be of higher concern to young adults given their longer life expectancy. Studies examining this have shown mixed results. In a survey of Dutch CRC patients utilizing the Cancer Worry Scale, 38% of patients reported high levels of fear of cancer recurrence (FCR).43 This study reported no correlation between FCR and age. However, in contrast to other studies, age was analyzed as a continuous variable and not dichotomized between YO-CRC (or AYA) and AO-CRC. As expected, higher FCR was correlated with more general and cancer-specific distress as well as lower quality of life.

In contrast, a survey from Germany on AYA cancer patients (unknown proportion of colorectal malignancies) utilizing the Fear of Progression Questionnaire showed a higher prevalence (59.5%) of high FCR score.44 A network analysis of the survey response demonstrated that the most frequent related fears included being less productive at work, not being able to work anymore, and fear of severe medications for treatment and whether those medications could damage their body. Additional significant concerns included fear of pain and relying on strangers for daily activities. Another Dutch study utilizing the Cancer Worry Scale questionnaire on AYA cancer patients (unknown proportion of colorectal malignancies) reported a high proportion (62%) of high FCR, which was higher than the rate of FCR in other all-age patients (31-52%).45 Again, patients with high FCR reported worse psychological and social functions and lower quality of life.

In a Norwegian Cancer Registry study on childhood, adolescent and young adult cancer survivors (NOR-CAYACS), which included 110 (11.8%) YO-CRC patients, 61.8% of YO-CRC patients reported at least some concern of cancer recurrence as well as 65.5% reporting at least some concern about developing another cancer.46 Average time between survey and diagnosis was 15.1 years, suggesting an extremely long timeframe where patients may live with fear of recurrence. In addition, 50.9% of patients reported late effects, which included any physical or psychological side effects from cancer treatment.

Another multi-institutional cross-sectional study using Fear of Cancer Recurrence-Short Form in adult survivors of childhood cancers (mostly hematologic) reported 32.3% of patients with elevated FCR.47 16.6% of patients reported clinically significant FCR, meaning FCR causing functional impairment or distress. Of note, patients who were treated with pelvic radiation had a higher prevalence ratio of clinically significant FCR.

In rectal cancer, there has been a shift towards total neoadjuvant therapy (TNT) followed by surgery, and there is a proportion of patients who achieve clinical complete response (cCR) and may be spared radical surgery or total mesorectal excision (TME).48 Based on available data, patients who achieve cCR after TNT may safely omit surgery and instead undergo close surveillance with digital rectal exam, endoscopy, and magnetic resonance imaging (MRI).48, 49, 50

An analysis of the International Watch & Wait Database (IWWD) by age showed comparable 3-year disease-specific survival and local regrowth rates between YO-CRC and AO-CRC patients.51 Given the importance of choosing treatment options in YO rectal cancer patients, a separate review will discuss watch-and-wait strategies in these patients, but the quality of life implications will be discussed here.

Surgery for rectal cancer significantly and negatively impacts quality of life especially related to bowel and sexual function, and younger patients may be more eager to choose the watch-and-wait strategy while balancing the oncologic risk. However, available data suggest that non-operative management is not free from side effects. A Dutch study of patients who underwent TNT followed by watch-and-wait (n = 41) versus TME (n = 41) who were followed for at least 2 years reported better quality of life measures and lower rates of problems with defecation, sexual function, and urinary function in those who did not undergo TME.52 Up to a third of watch-and-wait patients, however, reported LAR syndrome, and TNT itself was associated with functional complications. Another Dutch and Belgian multi-institutional study of 278 patients who underwent watch-and-wait after TNT, with 6% undergoing subsequent local excision and 14% requiring TME for local regrowth within the 2-year follow-up period, also examined the quality of life and functional outcomes between the different interventions.53 At 2 years, 24.9% of patients reported major bowel dysfunction and 31.8% of male patients reported major erectile dysfunction with watch-and-wait. In a study comparing organ preservation between short-course and long-course neoadjuvant chemoradiation, those undergoing watch-and-wait reported LAR syndrome rates as high as 42% at 6 months after completion of TNT but down to 15-22% at 12 months.54 These studies demonstrate that TNT can lead to GI dysfunction even without surgery, and that YO rectal cancer patients should be counseled appropriately on choosing the best treatment option. Furthermore, given that neoadjuvant radiation increases the risk of sexual and genitourinary dysfunction and infertility,55 some patients may choose not to pursue organ preservation if surgery allows the omission of radiation therapy.

Non-operative management after TNT also adds additional concern regarding fear of recurrence, given local regrowth rate of 36% in Organ Preservation for Rectal Adenocarcinoma (OPRA) trial.50 In a qualitative study based on interviews of rectal cancer patients enrolled in watch-and-wait programs (mean age 68), anxiety surrounding recurrence, potential need for surgery and/or stoma, and surveillance was common.56 There is an ongoing prospective cohort study investigating the safety of watch-and-wait after achieving cCR that will also examine the fear of cancer recurrence,57 and it will be helpful to measure differences in fear of recurrence among different age groups.

Social disparities in cancer care may lead to worse outcomes in those patients who are socioeconomically disadvantaged. As summarized above, YO-CRC patients report different quality of life and psychosocial concerns compared to AO-CRC patients, but there are also known disparities within the YO-CRC group that may be important to address in caring for these patients. As expected, large administrative datasets including NCDB and National Cancer Institute Surveillance, Epidemiology, and End Results (SEER) showed that there was an overall survival difference based on patient race.58,59 In the analysis of NCDB data, black YO-CRC patients had worse overall survival compared to white, Hispanic, and Asian patients even with private insurance and in communities with higher income or education.59 SEER data confirmed that black YO-CRC patients had worse overall survival, but Hispanic and Asian patients also had somewhat worse survival compared to white patients.58 Outcomes for white patients improved during the study period but did not change for black, Hispanic, and Asian patients.

While there are no appreciable gender differences in survival in YO-CRC patients, some studies have reported worse psychosocial concerns in female patients. Female CRC patients reported more general health problems.60 Younger female patients with GI cancers were also more likely to report unmet needs in psychosocial support and nutritional counseling compared to male patients.19 On the other hand, younger male patients may more commonly have a conscious or unconscious emotional avoidance, which may lead to not seeking out additional help including medical and mental care.40 Special attention should be paid to racial and gender inequities when treating YO-CRC patients.