Abstract
The intent of this study was to evaluate the effect that an awareness of being a BRCA1 or BRCA2 mutation carrier has on the attitude towards prophylactic surgery and on developing depression symptoms. Thirty-five families were selected on the basis of previously detected BRCA1 or 2 mutations and 90 family members were given the appropriate questionnaires. Prophylactic mastectomy (PM) was considered by 21% of the Austrian mutation carriers (29% affected and 8% non-affected carriers). The majority of affected and non-affected carriers expected PM to impair the quality of their life. Fifty per cent would undergo prophylactic oophorectomy (53% affected and 46% non-affected carriers). The self-rating depression scale indicated that following mutation result disclosure the depression scores of carriers decreased (40 baseline vs 38 after result disclosure, P = 0.3), whereas, for non-carriers, scores increased (36 baseline vs 40 after result disclosure, P = 0.05). We conclude that information about carrier status is not associated with increased depression symptoms in mutation carriers. In non-carriers, depression scores increased slightly, probably reflecting survivor guilt. The option of having PM was associated with a negative impact on the quality of life and was declined by the majority of Austrian mutation carriers. © 2000 Cancer Research Campaign
Similar content being viewed by others
Article PDF
Change history
16 November 2011
This paper was modified 12 months after initial publication to switch to Creative Commons licence terms, as noted at publication
References
Bundey S (1997) Few psychological consequences of presymptomatic testing for Huntington disease. Lancet 349: 4
Burke W, Daly M, Garber J, Botkin J, Kahn MJE, Lynch P, McTiernan A, Offit K, Perlman J, Petersen G, Thomson E and Varricchio C (1997) Recommendations for follow-up care of individuals with an inherited predisposition to cancer. JAMA 277: 997–1003
Codori AM, Hanson R and Brandt J (1994) Self-selection in predictive testing for Huntington's disease. Am J Med Genet 54: 167–173
Croyle RT, Smith KR, Botkin JR, Baty B and Nash J (1997) Psychological responses to BRCA1 mutation testing. preliminary findings. Health Psychol 16: 63–72
Dudok deWit AC, Duivenvoorden HJ, Passchier J, Niermeijer MF and Tibben A and Workgroup, OMotRLG (1998) Course of distress experienced by persons at risk for an autosomal dominant inheritable disorder participating in a predictive testing program: an explorative study. Psychosom Med 60: 543–549
Hartmann LC, Schaid DJ, Woods JE, Crotty TP, Myers JL, Arnold PG, Petty PM, Sellers TA, Johnson JL, McDonnell SK, Frost MH, Jenkins RB, Grant CS and Michels VV (1999) Efficacy of bilateral prophylactic mastectomy in women with a family history of breast cancer. N Engl J Med 340: 77–84
Huggins M, Bloch M, Wiggins S, Adam S, Suchowersky O, Trew M, Klimek M, Greenberg C, Eleff M, Thompson L, Knight J, MacLeod P, Girard K, Theilmann J, Hedrick A and Hayden M (1992) Predictive testing for Huntington disease in Canada: adverse effects and unexpected results in those receiving a decreased risk. Am J Med Genet 42: 508–515
Lerman C, Narod S, Schulman K, Hughes C, Gomez-Caminero A, George B, Gold K, Trock B, Main D, Lynch J, Fulmore C, Snyder C, Lemon SJ, Theresa C, Tonin P, Gilbert L and Lynch H (1996) BRCA1 testing in families with hereditary breast-ovarian cancer. JAMA 275: 1885–1892
Lerman C, Schwartz MD, Lin TH, Hughes C, Narod S and Lynch HT (1997) The influence of psychological distress on use of genetic testing for cancer risk. J Consul Clin Psychol 65: 414–420
Lerman C, Hughes C, Lemon SJ, Main D, Synder C, Durham C, Narod S and Lynch HT (1998) What you don't know can hurt you: adverse psychologic effects in members of BRCA1 -linked and BRCA2 -linked families who decline genetic testing. J Clin Oncol 16: 1650–1654
Lynch HT, Lemon S, Durham C, Tinley ST, Connolly C, Lynch JF, Surdam J, Orinion E, Slominski-Caster S, Watson P, Lerman C, Tonin P, Lenoir G, Serova O and Narod S (1997) A descriptive study of BRCA1 testing and reactions to disclosure of test results. Cancer 79: 2219–2228
Meijers-Heijboer EJ, van Geel AN, Seynaeve C, Logmans A, Bartels C, Tilanus-Linthorst M, Halley DJJ, van den Ouweland A, Wagner A, Majoor-Krakauer D, Niermeyer MF, Devilee P and Klijn JGM (1997) Uptake presymptomatic DNA test and preventive measures in families with inherited breast- and/or ovarian cancer. Am J Hum Genet Suppl 61: A74
Schover LR (1991) The impact of breast cancer on sexuality, body image, intimate relationship. CA-Cancer J Clin 41: 112–120
Thompson DS and Shear MK (1998) Psychiatric disorders and gynecological oncology: a review of the literature. Gen Hosp Psychiat 20: 241–247
Tibben A, Vegter van der Vlis M, Skraastad M, Frets P, van der Kamp J, Niermeijer M, van Ommen G, Roos R, Rooijmans H, Stronks D and Verhade F (1992) DNA-testing for Huntington's disease in The Netherlands: a retrospective study on psychosocial effects. Am J Med Genet 44: 94–99
Wiggins S, Whyte P, Huggins M, Adam S, Theilmann J, Bloch J, Sheps S, Schechter M and Hayden M (1992) The psychological consequences of predictive testing for Huntington's disease Canadian Collaborative Study of Predictive Testing. New Engl J Med 327: 1401–5
Zung WK (1986) Zung self-rating depression scale and depression status inventory. In: Assessment of Depression, Sartorius N, Ban T (eds), pp 221–231. Springer: Berlin
Author information
Authors and Affiliations
Consortia
Rights and permissions
From twelve months after its original publication, this work is licensed under the Creative Commons Attribution-NonCommercial-Share Alike 3.0 Unported License. To view a copy of this license, visit http://creativecommons.org/licenses/by-nc-sa/3.0/
About this article
Cite this article
Wagner, T., Möslinger, R., Langbauer, G. et al. Attitude towards prophylactic surgery and effects of genetic counselling in families with BRCA mutations. Br J Cancer 82, 1249–1253 (2000). https://doi.org/10.1054/bjoc.1999.1086
Received:
Revised:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1054/bjoc.1999.1086
Keywords
This article is cited by
-
Adaptation of couples living with a high risk of breast/ovarian cancer and the association with risk-reducing surgery
Familial Cancer (2018)
-
Evolution of cancer risk assessment and counseling related to psychological, financial and legal implications
Familial Cancer (2016)
-
Long-term follow-up of Jewish women with a BRCA1 and BRCA2 mutation who underwent population genetic screening
Breast Cancer Research and Treatment (2012)
-
BRCA1/2 genetic testing uptake and psychosocial outcomes in men
Familial Cancer (2011)
-
Survivorship considerations in adults with hereditary breast and ovarian cancer syndrome: state of the science
Journal of Cancer Survivorship (2009)