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J Genet Couns. 2014 Oct;23(5):778-84. doi: 10.1007/s10897-013-9682-3. Epub 2014 Jan 8.

Balancing life with an increased risk of cancer: lived experiences in healthy individuals with Lynch syndrome.

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  • 1The HNPCC Register, Clinical Research Centre, Hvidovre Hospital, Copenhagen University, Kettegaard AllĂ© 30, 2650, Hvidovre, Denmark, Helle.petersen.02@regionh.dk.


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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