Young New Zealanders with bowel cancer are waiting months, and in some cases more than a year, to receive a diagnosis, according to the largest nationwide study of its kind released in the New Zealand Medical Journal. The findings are raising fresh concerns about how the health system responds to bowel cancer symptoms in younger adults.
Researchers from the University of Otago’s Christchurch Faculty of Medicine, working alongside Bowel Cancer New Zealand, surveyed 353 people who were diagnosed with colorectal cancer before the age of 50. The study uncovered significant gaps in diagnosis, treatment, support services and access to information specifically designed for younger patients.
The research found that half of respondents waited six months or longer from first noticing symptoms to receiving a definitive diagnosis. One in five waited more than a year.
Many patients reported multiple visits to healthcare providers before receiving specialist referrals, with nearly a quarter attending four or more appointments before being referred for further investigation. Almost one-third said their symptoms were initially attributed to other conditions such as irritable bowel syndrome, dietary intolerances or other gastrointestinal disorders.
Researchers say these delays are particularly concerning as rates of early-onset colorectal cancer continue to rise internationally. Historically viewed as a disease affecting older adults, bowel cancer is increasingly being diagnosed in younger people.
The consequences of delayed diagnosis are reflected in the severity of disease when patients are finally diagnosed.
Among respondents who knew their cancer stage, almost two-thirds were diagnosed with stage three or stage four bowel cancer, meaning the disease had already progressed significantly by the time treatment began.
The study highlights the importance of taking symptoms seriously regardless of age. Persistent rectal bleeding, ongoing changes in bowel habits, unexplained abdominal pain and other concerning symptoms should be investigated appropriately rather than dismissed because a patient is considered too young to be at risk.
The research also revealed major shortcomings in the support available to younger people living with bowel cancer.
Only 13 percent of respondents reported receiving information specifically tailored to younger adults, despite many facing challenges that differ significantly from those experienced by older patients. These include raising young families, maintaining employment, managing finances and concerns about fertility and relationships.
Less than one-third of participants said they received fertility counselling before or during treatment, while a similar number recalled receiving advice about the impact treatment could have on sexual health and function.
The study also found that relatively few Māori and Pacific patients reported being offered cultural support services during their cancer journey. Researchers suggest there is room for improvement in ensuring culturally appropriate support is consistently available to all patients.
Beyond the health impacts, bowel cancer is placing significant financial strain on younger patients and their families.
Nearly 60 percent of respondents took extended leave from work or study following diagnosis, while almost half experienced financial hardship due to treatment costs, lost income or additional family expenses.
The findings highlight the broader impact of cancer on younger adults who are often in the midst of building careers, raising children and supporting households.
Researchers say the study provides an important opportunity for patients to share their experiences and help shape future improvements in cancer care.
The findings are expected to contribute to ongoing discussions about earlier diagnosis, better referral pathways and the development of age-appropriate support services for younger people living with bowel cancer.
The message emerging from the research is clear: bowel cancer is no longer a disease affecting only older adults.
As rates continue to rise among younger people, awareness, early investigation of symptoms and access to appropriate support will become increasingly important in improving outcomes for patients across Aotearoa.
For many participants, the study is not only about highlighting gaps in the system but ensuring future patients receive faster diagnoses, better support and a greater chance of successful treatment.
