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Balancing Life with an Increased Risk of Cancer: Lived Experiences in Healthy Individuals with Lynch Syndrome

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Journal of Genetic Counseling

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Abstract

Possibilities to undergo predictive genetic testing for cancer have expanded, which implies that an increasing number of healthy individuals will learn about cancer predisposition. Knowledge about how an increased risk of disease influences life in a long-term perspective is largely unknown, which led us to explore lived experiences in healthy mutation carriers with Lynch syndrome. Individual interviews were subjected to descriptive phenomenological analysis. Four constitutions, namely, family context, interpretation and transformation, approach to risk and balancing life at risk were identified and formed the essence of the phenomenon “living with knowledge about risk.” Family context influences how experiences and knowledge are interpreted and transformed into thoughts and feelings, which relates to how risk is approached and handled. The constitutions influence each other in a dynamic relationship and create a balancing act between anxiety and worry and feelings of being safe and in control.

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Conflict of Interest

Authors Helle Vendel Petersen, Mef Nilbert, Inge Bernstein and Christina Carlsson declare they have no conflict of interest.

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Authors and Affiliations

  1. The HNPCC Register, Clinical Research Centre, Hvidovre Hospital, Copenhagen University, Kettegaard Allé 30, 2650, Hvidovre, Denmark

    Helle Vendel Petersen, Mef Nilbert & Inge Bernstein

  2. Department of Oncology, Institute of Clinical Sciences, Lund University, Lund, Sweden

    Helle Vendel Petersen, Mef Nilbert & Christina Carlsson

  3. Department of Surgery and Oncology, Aalborg University Hospital, Aalborg, Denmark

    Inge Bernstein

Authors
  1. Helle Vendel Petersen
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  2. Mef Nilbert
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  3. Inge Bernstein
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  4. Christina Carlsson
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Correspondence to Helle Vendel Petersen.

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Petersen, H.V., Nilbert, M., Bernstein, I. et al. Balancing Life with an Increased Risk of Cancer: Lived Experiences in Healthy Individuals with Lynch Syndrome. J Genet Counsel 23, 778–784 (2014). https://doi.org/10.1007/s10897-013-9682-3

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  • DOI: https://doi.org/10.1007/s10897-013-9682-3

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