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

This qualitative study explored how people with hereditary cancer syndromes (hereditary breast and ovarian cancer and Lynch syndrome) experience their care across the health system.

Using semi-structured interviews with 73 adults from cancer and genetics clinics in three Canadian provinces, the authors found that:

• Many patients felt disoriented after learning they had a hereditary cancer syndrome, describing it as “navigating a road without a map.”
• Their care often felt fragmented:
  • Multiple organs and specialties involved, with limited coordination.
  • Information from different providers was inconsistent or incomplete.
  • Patients perceived their bodies, care, and information as “broken up” rather than managed as a whole.
• This fragmentation contributed to ongoing uncertainty and psychological distress.
• Participants expressed a clear preference for:
  • More integrated, coordinated care.
  • Consistent, knowledgeable providers who understand hereditary cancer syndromes.
  • A holistic, person-centered approach rather than organ- or test-focused care.

Specific points in the care journey where participants felt they particularly needed increased psychological support were:

• Immediately after learning their hereditary cancer status.
• While waiting for and receiving imaging and surveillance results.
• When considering and undergoing risk-reducing surgeries.

The study underscores that, beyond surveillance and risk-reduction protocols, hereditary cancer care should deliberately incorporate coordinated care models and structured psychosocial support at key decision and transition points.