title: Living with hereditary non-polyposis colorectal cancer; experiences from and impact of genetic testing.
abstract: Hereditary non-polyposis colorectal cancer (HNPCC) is one of our most common cancer syndromes and an increasing number of individuals live in families with verified hereditary cancer. We conducted an interview study to explore experiences from and perceived impact on life after genetic testing for HNPCC. Three major themes emerged: reactions and emotions, family relations and implications for life. Among the reactions described were suspecting heredity, feelings of guilt, the importance of experiential knowledge, and coping strategies. The impact on family relations was related to perceived responsibility for conveying information, encountering different reactions among family members, and difficulties in communication and relations. The implications described included uncertainty, adaptation, new choices and changes in life, family planning issues, and experiences of surveillance programs. We suggest that the themes and sub-themes identified should be taken into account during genetic counselling in order to facilitate the spread of information and to prepare family members for the impact on life that knowledge about hereditary cancer may have.
authors: Department of Oncology, Institute of Clinical Sciences, Lund University Hospital, 221 85, Lund, Sweden. christina.carlsson@med.lu.se
authors: C
authors: C
authors: Carlsson
authors: M
authors: M
authors: Nilbert
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D001007:Anxiety; D002353:Carrier State; D003123:Colorectal Neoplasms, Hereditary Nonpolyposis / Q000235:genetics* / Q000523:psychology*; D004644:Emotions; D005260:Female; D005817:Genetic Counseling; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D009154:Mutation
references: Genet Test. 2005 Fall;9(3):261-8
references: 16225406
references: J Genet Couns. 2005 Apr;14(2):133-40
references: 15959644
references: Patient Educ Couns. 2004 Nov;55(2):265-74
references: 15530764
references: Fam Cancer. 2005;4(2):163-7
references: 15951968
references: Genet Test. 2002 Winter;6(4):281-90
references: 12537652
references: Eur J Hum Genet. 2000 Oct;8(10):731-8
references: 11039571
references: Eur J Cancer. 2007 Jan;43(1):71-7
references: 17045473
references: Psychooncology. 2005 Dec;14(12):1060-74
references: 15937976
references: Community Genet. 2004;7(1):15-24
references: 15475667
references: J Psychosom Res. 2003 Nov;55(5):427-35
references: 14581097
references: Clin Genet. 2003 Sep;64(3):179-89
references: 12919131
references: Ann Oncol. 2006 Jul;17(7):1090-5
references: 16600981
references: Am J Epidemiol. 2002 Nov 15;156(10 ):885-902
references: 12419761
references: J Genet Couns. 2004 Apr;13(2):115-33
references: 15612172
references: J Med Genet. 2001 Feb;38(2):139
references: 11288719
references: Soc Sci Med. 2002 May;54(10):1463-70
references: 12061481
references: J Med Ethics. 1999 Apr;25(2):144-50
references: 10226920
references: JAMA. 2006 Sep 27;296(12):1507-17
references: 17003399
references: Cancer Epidemiol Biomarkers Prev. 1999 Apr;8(4 Pt 2):345-51
references: 10207639
references: Fam Cancer. 2005;4(4):295-300
references: 16341806
references: Am J Med Genet. 2001 Sep 15;103(1):9-15
references: 11562928
references: J Genet Couns. 2005 Feb;14 (1):55-69
references: 15789156
references: Am J Med Genet C Semin Med Genet. 2003 May 15;119C(1):78-86
references: 12704641
references: Health Psychol. 2006 Mar;25(2):211-9
references: 16569113
references: J Genet Couns. 2006 Oct;15(5):325-37
references: 16972194
references: Clin Genet. 2003 Oct;64(4):317-26
references: 12974737
references: Int J Cancer. 1999 Apr 12;81(2):214-8
references: 10188721
references: Clin Genet. 2004 Dec;66(6):502-11
references: 15521977
references: Cancer Epidemiol Biomarkers Prev. 2003 Apr;12(4):304-13
references: 12692104
references: J Natl Cancer Inst Monogr. 1999;(25):101-19
references: 10854465