"Where do I go from here?" Navigating a lifelong road without a map: the care experiences of hereditary cancer...

Individuals with hereditary cancer syndromes (HCS) face significant healthcare challenges, as they require lifelong surveillance for a multitude of at-risk organs. Despite the existence of HCS programs, literature has not elucidated the patient perspective of living with an HCS and the care journey. This study aimed to inform clinical practice by exploring the care experiences of HCS patients. HCS patients were purposely sampled from cancer/genetic clinics across three Canadian provinces to reflect demographic and clinical variations. Data collection included qualitative, semi-structured interviews. Analysis used interpretive descriptive methodology. Seventy-three participants were interviewed (39 Hereditary breast and ovarian cancer syndrome, 34 Lynch syndrome; 51 females, 21 males, 1 gender-diverse; aged 25-80). Participants described a sense of disorientation after their HCS diagnosis, with a sense of navigating a road without a map. These feelings emerged from the "fragmentation" of their care, bodies, and information from healthcare practitioners. Consequently, participants described experiencing uncertainty and distress, and desired care integration in the form of consistent, knowledgeable practitioners and a holistic approach to care. Key timepoints were revealed where increased psychological support may be required: following HCS diagnosis, when obtaining imaging results, and when undergoing risk-reducing surgery. This study highlights the need for a comprehensive, person-centered approach to HCS management.