Being sick to a cancer patient: pathways of delay in help seeking and diagnosis of cancer in India

Abstract

There is evidence that cancer mortality and morbidity could be reduced when the disease is diagnosed and treated at an early stage. The paper examines the pathways of delay of cancer diagnosis in an Indian setting. It draws on a qualitative study conducted among cancer survivors and family members of cancer patients in the city of Bengaluru, South India. The results show that a substantial part of the delay occurred at the stage of initial formal help seeking wherein patient and family-led, disease-related and systemic factors together played a major role. Patient-led factors included trivialisation and normalisation of symptoms as part of general fatigue and aging; unrealistic risk perceptions that linked causality of cancer merely to heredity and behavioural risk factors; fear of being diagnosed as cancer patient; gender related reasons including family’s gender performance expectation, lower agency of women to seek help and lower prioratisation of women’s health in the household and access related issues including financial constraints and unavailability of specialised hospitals nearby. Disease-related factors included the presence of comorbidity, cancer’s mimicking of symptoms of other diseases and absence of distinguishable symptoms at the initial stage for certain types of cancers. The practitioner-led and system-led factors such as trivialisation of symptoms by general practitioners, non cancer-specific referrals, and lack of cancer screening facilities accounted for a major part of delay after the formal help seeking. The paper argues that the mere knowledge of cancer symptoms did not always lead to early diagnosis due to the interplay of these factors. The ongoing cancer prevention and control interventions in India need to be informed of these micro level factors while developing strategies to prevent avoidable delays in cancer diagnosis.