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

Helle Vendel Petersen, Mef Nilbert, Inge Bernstein, Christina Carlsson

1 Citation (Scopus)

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.

Original languageEnglish
JournalJournal of Genetic Counseling
Volume23
Issue number5
Pages (from-to)778-784
Number of pages7
ISSN1059-7700
DOIs
Publication statusPublished - 1 Oct 2014

Keywords

  • Adaptation, Psychological
  • Colorectal Neoplasms, Hereditary Nonpolyposis
  • Humans
  • Neoplasms
  • Risk Factors

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