Skip to main content
Top
Published in: Familial Cancer 3/2011

Open Access 01-09-2011

Cancer worry among Norwegian male BRCA1/2 mutation carriers

Authors: Nina Strømsvik, Målfrid Råheim, Eva Gjengedal

Published in: Familial Cancer | Issue 3/2011

Login to get access

Abstract

This qualitative study explored the experiences of Norwegian men after being identified as BRCA 1/2 mutation-positive. Only limited knowledge is available on this topic; therefore, the aim of this study was to gain a deeper insight from the men’s own perspectives. Data were collected from in-depth interviews with 15 men and seven of their partners. The participants described fear of cancer development, and two main narrative patterns were identified: fear for their own health, including fear of developing cancer, and negative feelings about responsibility for others’ health. The men expressed fear of developing cancer themselves and described a need for genetic risk information. They were also deeply concerned about how the mutation might affect their children and other relatives. There is a need for guidelines concerning genetic risk information and follow-up programs for male BRCA 1/2 mutation carriers. This study adds valuable contextual insights into their experiences of living with fear of cancer.
Literature
1.
go back to reference Levy-Lahad E, Friedman E (2007) Cancer risks among BRCA1 and BRCA2 mutation carriers. Br J Cancer 96(1):11–15PubMedCrossRef Levy-Lahad E, Friedman E (2007) Cancer risks among BRCA1 and BRCA2 mutation carriers. Br J Cancer 96(1):11–15PubMedCrossRef
2.
go back to reference Møller P (2006) Diagnostikk og behandling av arvelig bryst-og eggstokkreft. Konsensusforslag NGAK, NBCG, NFGO verdr Tiltak ved arvelig bryst-og eggstokkreft Møller P (2006) Diagnostikk og behandling av arvelig bryst-og eggstokkreft. Konsensusforslag NGAK, NBCG, NFGO verdr Tiltak ved arvelig bryst-og eggstokkreft
3.
go back to reference Lux MP, Fasching PA, Beckmann MW (2006) Hereditary breast and ovarian cancer: review and future perspectives. J Mol Med 84(1):16–28PubMedCrossRef Lux MP, Fasching PA, Beckmann MW (2006) Hereditary breast and ovarian cancer: review and future perspectives. J Mol Med 84(1):16–28PubMedCrossRef
4.
go back to reference Mohamad HB, Apffelstaedt JP (2008) Counseling for male BRCA mutation carriers: a review. Breast 17(5):441–450PubMedCrossRef Mohamad HB, Apffelstaedt JP (2008) Counseling for male BRCA mutation carriers: a review. Breast 17(5):441–450PubMedCrossRef
5.
go back to reference Mitra A, Fisher C, Foster CS et al (2008) Prostate cancer in male BRCA1 and BRCA2 mutation carriers has a more aggressive phenotype. Br J Cancer 98(2):502–507PubMedCrossRef Mitra A, Fisher C, Foster CS et al (2008) Prostate cancer in male BRCA1 and BRCA2 mutation carriers has a more aggressive phenotype. Br J Cancer 98(2):502–507PubMedCrossRef
6.
go back to reference Mitra AV, Bancroft EK, Barbachano Y et al (2010) Targeted prostate cancer screening in men with mutations in BRCA1 and BRCA2 detects aggressive prostate cancer: preliminary analysis of the results of the IMPACT study. BJU Int 107(1):28–39 Mitra AV, Bancroft EK, Barbachano Y et al (2010) Targeted prostate cancer screening in men with mutations in BRCA1 and BRCA2 detects aggressive prostate cancer: preliminary analysis of the results of the IMPACT study. BJU Int 107(1):28–39
7.
go back to reference Narod SA, Neuhausen S, Vichodez G et al (2008) Rapid progression of prostate cancer in men with a BRCA2 mutation. Br J Cancer 99(2):371–374PubMedCrossRef Narod SA, Neuhausen S, Vichodez G et al (2008) Rapid progression of prostate cancer in men with a BRCA2 mutation. Br J Cancer 99(2):371–374PubMedCrossRef
8.
go back to reference Stromsvik N, Raheim M, Oyen N, Gjengedal E (2009) Men in the women’s world of hereditary breast and ovarian cancer–a systematic review. Fam Cancer 8(3):221–229PubMedCrossRef Stromsvik N, Raheim M, Oyen N, Gjengedal E (2009) Men in the women’s world of hereditary breast and ovarian cancer–a systematic review. Fam Cancer 8(3):221–229PubMedCrossRef
9.
go back to reference Hallowell N, Arden-Jones A, Eeles R et al (2006) Guilt, blame and responsibility: men’s understanding of their role in the transmission of BRCA1/2 mutations within their family. Sociol Health Illn 28(7):969–988PubMedCrossRef Hallowell N, Arden-Jones A, Eeles R et al (2006) Guilt, blame and responsibility: men’s understanding of their role in the transmission of BRCA1/2 mutations within their family. Sociol Health Illn 28(7):969–988PubMedCrossRef
10.
go back to reference Liede A, Metcalfe K, Hanna D et al (2000) Evaluation of the needs of male carriers of mutations in BRCA1 or BRCA2 who have undergone genetic counseling. Am J Hum Genet 67(6):1494–1504PubMedCrossRef Liede A, Metcalfe K, Hanna D et al (2000) Evaluation of the needs of male carriers of mutations in BRCA1 or BRCA2 who have undergone genetic counseling. Am J Hum Genet 67(6):1494–1504PubMedCrossRef
11.
go back to reference Hallowell N, Ardern-Jones A, Eeles R et al (2005) Men’s decision-making about predictive BRCA1/2 testing: the role of family. J Genet Couns 14(3):207–217PubMedCrossRef Hallowell N, Ardern-Jones A, Eeles R et al (2005) Men’s decision-making about predictive BRCA1/2 testing: the role of family. J Genet Couns 14(3):207–217PubMedCrossRef
12.
go back to reference d’Agincourt-Canning L (2001) Experiences of genetic risk: disclosure and the gendering of responsibility. Bioethics 15(3):231–247PubMedCrossRef d’Agincourt-Canning L (2001) Experiences of genetic risk: disclosure and the gendering of responsibility. Bioethics 15(3):231–247PubMedCrossRef
13.
go back to reference Lodder L, Frets PG, Trijsburg RW et al (2001) Men at risk of being a mutation carrier for hereditary breast/ovarian cancer: an exploration of attitudes and psychological functioning during genetic testing. Eur J Hum Genet 9(7):492–500PubMedCrossRef Lodder L, Frets PG, Trijsburg RW et al (2001) Men at risk of being a mutation carrier for hereditary breast/ovarian cancer: an exploration of attitudes and psychological functioning during genetic testing. Eur J Hum Genet 9(7):492–500PubMedCrossRef
14.
go back to reference Hallowell N, Ardern-Jones A, Eeles R et al (2005) Communication about genetic testing in families of male BRCA1/2 carriers and non-carriers: patterns, priorities and problems. Clin Genet 67(6):492–502PubMedCrossRef Hallowell N, Ardern-Jones A, Eeles R et al (2005) Communication about genetic testing in families of male BRCA1/2 carriers and non-carriers: patterns, priorities and problems. Clin Genet 67(6):492–502PubMedCrossRef
15.
go back to reference McAllister MF, Evans DG, Ormiston W, Daly P (1998) Men in breast cancer families: a preliminary qualitative study of awareness and experience. J Med Genet 35(9):739–744PubMedCrossRef McAllister MF, Evans DG, Ormiston W, Daly P (1998) Men in breast cancer families: a preliminary qualitative study of awareness and experience. J Med Genet 35(9):739–744PubMedCrossRef
16.
go back to reference Daly PA, Nolan C, Green A et al (2003) Predictive testing for BRCA1 and 2 mutations: a male contribution. Ann Oncol 14(4):549–553PubMedCrossRef Daly PA, Nolan C, Green A et al (2003) Predictive testing for BRCA1 and 2 mutations: a male contribution. Ann Oncol 14(4):549–553PubMedCrossRef
17.
go back to reference Dudok de Wit AC, Tibben A, Frets PG, Meijers-Heijboer EJ, Devilee P, Niermeijer MF (1996) Males at-risk for the BRCA1 gene, the psychological impact. Psychooncology 5:251–257CrossRef Dudok de Wit AC, Tibben A, Frets PG, Meijers-Heijboer EJ, Devilee P, Niermeijer MF (1996) Males at-risk for the BRCA1 gene, the psychological impact. Psychooncology 5:251–257CrossRef
18.
go back to reference Giorgi A (1985) Phenomeology and psychological research. Duquesne University Press, Pittsburgh Giorgi A (1985) Phenomeology and psychological research. Duquesne University Press, Pittsburgh
19.
go back to reference Giorgi A (2009) The descriptive phenomenological method in psychology: a modified Husserlian approach. Duquesne University Press, Pittsburgh Giorgi A (2009) The descriptive phenomenological method in psychology: a modified Husserlian approach. Duquesne University Press, Pittsburgh
20.
go back to reference Stromsvik N, Raheim M, Oyen N, Engebretsen LF, Gjengedal E (2010) Stigmatization and male identity: Norwegian males’ experience after identification as BRCA1/2 mutation carriers. J Genet Couns 19(4):360–370PubMedCrossRef Stromsvik N, Raheim M, Oyen N, Engebretsen LF, Gjengedal E (2010) Stigmatization and male identity: Norwegian males’ experience after identification as BRCA1/2 mutation carriers. J Genet Couns 19(4):360–370PubMedCrossRef
21.
go back to reference Benner P (1994) Interpretive phenomenology. Sage Publication, California Benner P (1994) Interpretive phenomenology. Sage Publication, California
22.
go back to reference Chamberlain K, Stephens C, Lyons AC (1997) Encompassing experience: meanings and methods in health psychology. Psychol Health 12:691–709CrossRef Chamberlain K, Stephens C, Lyons AC (1997) Encompassing experience: meanings and methods in health psychology. Psychol Health 12:691–709CrossRef
23.
go back to reference Polkinghorne DE (1995) Narrative configuration in qualitative analysis. In: Hatch JA, Wisniewski R (eds) Life history and narrative. The Falmer Press, London, pp 5–24 Polkinghorne DE (1995) Narrative configuration in qualitative analysis. In: Hatch JA, Wisniewski R (eds) Life history and narrative. The Falmer Press, London, pp 5–24
24.
go back to reference Reissman CK (1993) Narrative analysis. Sage Publications, London Reissman CK (1993) Narrative analysis. Sage Publications, London
25.
go back to reference Antonovsky A (1987) The mystery of health: how people manage stress and stay well. Jossey bass, San Francisco Antonovsky A (1987) The mystery of health: how people manage stress and stay well. Jossey bass, San Francisco
26.
27.
go back to reference Glanz K, Rimer BK, Lewis FM (2002) Health behavior and health education theory, research, and practice. 3rd edn. Jossey-Bass, San Francisco Glanz K, Rimer BK, Lewis FM (2002) Health behavior and health education theory, research, and practice. 3rd edn. Jossey-Bass, San Francisco
28.
go back to reference Finlay E, Stopfer JE, Burlingame E et al (2008) Factors determining dissemination of results and uptake of genetic testing in families with known BRCA1/2 mutations. Genet Test 12(1):81–91PubMedCrossRef Finlay E, Stopfer JE, Burlingame E et al (2008) Factors determining dissemination of results and uptake of genetic testing in families with known BRCA1/2 mutations. Genet Test 12(1):81–91PubMedCrossRef
29.
go back to reference MacDonald DJ, Sarna L, Weitzel JN, Ferrell B (2010) Women’s perceptions of the personal and family impact of genetic cancer risk assessment: focus group findings. J Genet Couns 19(2):148–160PubMedCrossRef MacDonald DJ, Sarna L, Weitzel JN, Ferrell B (2010) Women’s perceptions of the personal and family impact of genetic cancer risk assessment: focus group findings. J Genet Couns 19(2):148–160PubMedCrossRef
30.
go back to reference McAllister M, Davies L, Payne K, Nicholls S, Donnai D, MacLeod R (2007) The emotional effects of genetic diseases: implications for clinical genetics. Am J Med Genet A 143A(22):2651–2661PubMedCrossRef McAllister M, Davies L, Payne K, Nicholls S, Donnai D, MacLeod R (2007) The emotional effects of genetic diseases: implications for clinical genetics. Am J Med Genet A 143A(22):2651–2661PubMedCrossRef
31.
go back to reference Getz L, Nilsson PM, Hetlevik I (2003) A matter of heart: the general practitioner consultation in an evidence-based world. Scand J Prim Health Care 21(1):3–9PubMedCrossRef Getz L, Nilsson PM, Hetlevik I (2003) A matter of heart: the general practitioner consultation in an evidence-based world. Scand J Prim Health Care 21(1):3–9PubMedCrossRef
32.
33.
go back to reference Getz L, Kirkengen AL, Hetlevik I, Romundstad S, Sigurdsson JA (2004) Ethical dilemmas arising from implementation of the European guidelines on cardiovascular disease prevention in clinical practice. A descriptive epidemiological study. Scand J Prim Health Care 22(4):202–208PubMedCrossRef Getz L, Kirkengen AL, Hetlevik I, Romundstad S, Sigurdsson JA (2004) Ethical dilemmas arising from implementation of the European guidelines on cardiovascular disease prevention in clinical practice. A descriptive epidemiological study. Scand J Prim Health Care 22(4):202–208PubMedCrossRef
34.
go back to reference Stroup AM, Smith KR (2007) Familial effects of BRCA1 genetic mutation testing: changes in perceived family functioning. Cancer Epidemiol Biomarkers Prev 16(1):135–141PubMedCrossRef Stroup AM, Smith KR (2007) Familial effects of BRCA1 genetic mutation testing: changes in perceived family functioning. Cancer Epidemiol Biomarkers Prev 16(1):135–141PubMedCrossRef
35.
go back to reference Mishler CG (1986) Research interviewing. Context and narrative. Harvard University Press, Cambrigde Mishler CG (1986) Research interviewing. Context and narrative. Harvard University Press, Cambrigde
Metadata
Title
Cancer worry among Norwegian male BRCA1/2 mutation carriers
Authors
Nina Strømsvik
Målfrid Råheim
Eva Gjengedal
Publication date
01-09-2011
Publisher
Springer Netherlands
Published in
Familial Cancer / Issue 3/2011
Print ISSN: 1389-9600
Electronic ISSN: 1573-7292
DOI
https://doi.org/10.1007/s10689-011-9456-8

Other articles of this Issue 3/2011

Familial Cancer 3/2011 Go to the issue
Webinar | 19-02-2024 | 17:30 (CET)

Keynote webinar | Spotlight on antibody–drug conjugates in cancer

Antibody–drug conjugates (ADCs) are novel agents that have shown promise across multiple tumor types. Explore the current landscape of ADCs in breast and lung cancer with our experts, and gain insights into the mechanism of action, key clinical trials data, existing challenges, and future directions.

Dr. Véronique Diéras
Prof. Fabrice Barlesi
Developed by: Springer Medicine