Long-Term Psychological Impact of Carrying a BRCA1/2 Mutation and Prophylactic Surgery: A 5-Year Follow-Up Study

van Oostrom, Iris; Meijers-Heijboer, Hanne; Lodder, Litanja N.; Duivenvoorden, Hugo J.; van Gool, Arthur R.; Seynaeve, Caroline; van der Meer, Conny A.; Klijn, Jan G.M.; van Geel, Bert N.; Burger, Curt W.; Wladimiroff, Juriy W.; Tibben, Aad

doi:10.1200/jco.2003.10.100

Cited by 281BRCA gene mutations in cancerFamily Support in IllnessCancer survivorship and care

Long-Term Psychological Impact of Carrying a BRCA1/2 Mutation and Prophylactic Surgery: A 5-Year Follow-Up Study

van Oostrom, Iris, Meijers-Heijboer, Hanne, Lodder, Litanja N., Duivenvoorden, Hugo J., van Gool, Arthur R., Seynaeve, Caroline, van der Meer, Conny A., Klijn, Jan G.M. +4 more·2003·Journal of Clinical Oncology

DOI 10.1200/jco.2003.10.100

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Abstract

Purpose: To explore long-term psychosocial consequences of carrying a BRCA1/2 mutation and to identify possible risk factors for long-term psychological distress. Patients and Methods: Five years after genetic test disclosure, 65 female participants (23 carriers, 42 noncarriers) of our psychological follow-up study completed a questionnaire and 51 participants were interviewed. We assessed general and hereditary cancer-related distress, risk perception, openness to discuss the test result with relatives, body image and sexual functioning. Results: Carriers did not differ from noncarriers on several distress measures and both groups showed a significant increase in anxiety and depression from 1 to 5 years follow-up. Carriers having undergone prophylactic surgery (21 of 23 carriers) had a less favorable body image than noncarriers and 70% reported changes in the sexual relationship. A major psychological benefit of prophylactic surgery was a reduction in the fear of developing cancer. Predictors of long-term distress were hereditary cancer-related distress at blood sampling, having young children, and having lost a relative to breast/ovarian cancer. Long-term distress was also associated with less open communication about the test result within the family, changes in relationships with relatives, doubting about the validity of the test result, and higher risk perception. Conclusion: Our findings support the emerging consensus that genetic predisposition testing for BRCA1/2 does not pose major mental health risks, but our findings also show that the impact of prophylactic surgery on aspects such as body image and sexuality should not be underestimated, and that some women are at risk for high distress, and as a result, need more attentive care.

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Post-surgical distress is related to surgical complications, perceived risk of breast cancer, having young children, and psychiatric history.
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BackgroundResultInfluential
Body image and psychological distress after prophylactic mastectomy and breast reconstruction in genetically predisposed women: A prospective long-term follow-up study
den Heijer, M., Seynaeve, C., Timman, R., Duivenvoorden, H. J., Vanheusden, K., Tilanus‐Linthorst, M. M. A., Menke‐Pluijmers, M. B. E., & Tibben, A. (2011) · European Journal of Cancer · doi:10.1016/j.ejca.2011.10.020 · Cited by 82 · see citing works
Self-citation
Assessment of Psychosocial Outcomes in Genetic Counseling Research: An Overview of Available Measurement Scales
Kasparian, N. A., Wakefield, C. E., & Meiser, B. (2007) · Journal of Genetic Counseling · doi:10.1007/s10897-007-9111-6 · Cited by 81 · see citing works
Cancer Genetic Counseling: Communication and Counselees’ Post-Visit Satisfaction, Cognitions, Anxiety, and Needs Fulfillment
Pieterse, A., van Dulmen, A., Beemer, F., Bensing, J., & Ausems, M. (2007) · Journal of Genetic Counseling · doi:10.1007/s10897-006-9048-1 · Cited by 87 · see citing works
“Anxiety was measured with the state version of the State-Trait Anxiety Inventory (STAI; 10 items) (Van der Ploeg et al., 1980).”
Influential
The Trajectory of Psychological Impact in BRCA1/2 Genetic Testing: Does Time Heal?
Beran, T. M., Stanton, A. L., Kwan, L. C., Seldon, J. L., Bower, J. E., Vodermaier, A., & Ganz, P. A. (2008) · Annals of Behavioral Medicine · doi:10.1007/s12160-008-9060-9 · Cited by 80 · see citing works
“One study [ 48 ] of 65 women revealed that anxiety and depressive symptoms increased significantly in BRCA1/2� and BRCA1/2+ women from 1 year to approximately 5 years after testing, predicted by cancer-specific distress, having lost a relative to breast/ ovarian cancer, less open communication about the test result, a…”
Background
Tolerance for uncertainty and perceived risk among women receiving uninformativeBRCA1/2test results
O’Neill, S. C., DeMarco, T. A., Peshkin, B. N., Rogers, S., Rispoli, J., Brown, K., Valdimarsdottir, H. B., & Schwartz, M. D. (2006) · American Journal of Medical Genetics Part C Seminars in Medical Genetics · doi:10.1002/ajmg.c.30104 · Cited by 79 · see citing works
“Previous studies indicate that, as a group, women receiving BRCA1/2 testing do not report significantly increased distress following the disclosure of test results [Schwartz et al., 2002; Coyne et al., 2003; van Oostrom et al., 2003].”
Background
High satisfaction rates in women after DIEP flap breast reconstruction
Damen, T. H. C., Timman, R., Kunst, E. H., Gopie, J. P., Bresser, P. J. C., Seynaeve, C., Menke‐Pluijmers, M. B. E., Mureau, M. A. M., Hofer, S. O. P., & Tibben, A. (2008) · Journal of Plastic Reconstructive & Aesthetic Surgery · doi:10.1016/j.bjps.2008.08.019 · Cited by 79 · see citing works
Self-citation
Family system characteristics and psychological adjustment to cancer susceptibility genetic testing: a prospective study
van Oostrom, I., Meijers-Heijboer, H. E. J., Duivenvoorden, H. J., Bröcker-Vriends, A. H. J. T., van Asperen, C. J., Sijmons, R. H., Seynaeve, C., Gool, A. R. V., Klijn, J. G. M., & Tibben, A. (2006) · Clinical Genetics · doi:10.1111/j.1399-0004.2007.00731.x · Cited by 76 · see citing works
“This was assessed by the Openness to Discuss Hereditary Cancer in the Family Scale (7, 22).”
BackgroundMethodInfluentialSelf-citation
Predictive Genetic Testing for Hereditary Breast and Ovarian Cancer: Psychological Distress and Illness Representations 1 Year Following Disclosure
Claes, E., Evers‐Kiebooms, G., Denayer, L., Decruyenaere, M., Boogaerts, A., Philippe, K., & Legius, E. (2005) · Journal of Genetic Counseling · doi:10.1007/s10897-005-1371-4 · Cited by 75 · see citing works
“At present, the risk factor that is most commonly identified in studies on emotional impact of genetic testing, is predisclosure distress (Croyle et al., 1997; Lodder et al., 2000; Tercyak et al., 2001; Van Oostrom et al., 2003) and this was also the case in our study.”
BackgroundResultInfluential
Sexual Oncology: Sexual Health Issues in Women with Cancer
Krychman, M., Pereira, L., Carter, J., & Amsterdam, A. (2006) · Oncology · doi:10.1159/000100521 · Cited by 74 · see citing works
Long-Term Psychosocial Outcomes of BRCA1/BRCA2 Testing: Differences across Affected Status and Risk-Reducing Surgery Choice
Graves, K. D., Vegella, P. L., Poggi, E. A., Peshkin, B. N., Tong, A., Isaacs, C. J., Finch, C., Kelly, S. P., Taylor, K. L., Luta, G., et al. (2012) · Cancer Epidemiology Biomarkers & Prevention · doi:10.1158/1055-9965.epi-11-0991 · Cited by 74 · see citing works
“on psychosocial outcomes between carriers and noncarriers at 3 years (11) or 5 years posttesting (19).”
Background
Association between clinical characteristics and risk‐reduction interventions in women who underwent BRCA1 and BRCA2 testing
Uyei, A. R., Peterson, S. K., Erlichman, J., Broglio, K. R., Yekell, S., Schmeler, K., Lu, K. H., Meric‐Bernstam, F., Amos, C. I., Strong, L. C., et al. (2006) · Cancer · doi:10.1002/cncr.22352 · Cited by 74 · see citing works
Opinion about reproductive decision making among individuals undergoing BRCA1/2 genetic testing in a multicentre Spanish cohort
Fortuny, D., Balmañà, J., Graña, B., Torres, A., y Cajal, T. R., Darder, E., Gadea, N., Velasco, À., Lopez, C., Sanz, J., et al. (2008) · Human Reproduction · doi:10.1093/humrep/den471 · Cited by 71 · see citing works
“Finally, the diagnosis of a genetic susceptibility to breast and/or ovarian cancer may lead to an increase in anxiety and psychological disturbance (Van Oostrom et al., 2003).”
Background
Long-Term Effects of Breast Cancer Therapy and Care: Calm after the Storm?
Tommasi, C., Balsano, R., Corianò, M., Pellegrino, B., Saba, G., Bardanzellu, F., Denaro, N., Ramundo, M., Toma, I., Fusaro, A., et al. (2022) · Journal of Clinical Medicine · doi:10.3390/jcm11237239 · Cited by 76 · see citing works
Psychiatric implications of cancer genetic testing
Hirschberg, A., Chan–Smutko, G., & Pirl, W. F. (2014) · Cancer · doi:10.1002/cncr.28879 · Cited by 69 · see citing works
“Initial long-term studies for BRCA1/BRCA2 focused on individuals without cancer and reported no differences in psychosocial outcomes between carriers and noncarriers at 3 years(89) or 5 years after testing.(90) The 5year study included carriers, most of whom (91%) had undergone prophylactic surgery, which may have con…”
BackgroundResultInfluential
Looking different, feeling different: women’s reactions to risk-reducing breast and ovarian surgery
kConFab Psychosocial Group on behalf of the kConFab Investigators, Hallowell, N., Baylock, B., Heiniger, L., Butow, P. N., Patel, D., Meiser, B., Saunders, C., & Price, M. A. (2012) · Familial Cancer · doi:10.1007/s10689-011-9504-4 · Cited by 66 · see citing works
“that women who undergo RR surgery have a very positive emotional response to the reduction of their breast and/or ovarian cancer risk [26, 36] and often like the look of their reconstructed breasts following RRM [19–21].”
Background
Comparison of individuals opting for BRCA1/2 or HNPCC genetic susceptibility testing with regard to coping, illness perceptions, illness experiences, family system characteristics and hereditary cancer distress
van Oostrom, I., Meijers-Heijboer, H. E. J., Duivenvoorden, H. J., Bröcker‐Vriends, A. H. J. T., van Asperen, C. J., Sijmons, R. H., Seynaeve, C., Gool, A. R. V., Klijn, J. G. M., & Tibben, A. (2006) · Patient Education and Counseling · doi:10.1016/j.pec.2006.05.006 · Cited by 65 · see citing works
Self-citation
Long-Term Reactions to Genetic Testing forBRCA1andBRCA2Mutations: Does Time Heal Women's Concerns?
Halbert, C. H., Stopfer, J. E., McDonald, J. A., Weathers, B., Collier, A., Troxel, A. B., & Domchek, S. M. (2011) · Journal of Clinical Oncology · doi:10.1200/jco.2010.33.1561 · Cited by 65 · see citing works
“Despite this, most studies have evaluated psychological reactions for only approximately 1 year after test results disclosure,(6) and to our knowledge, only one international study has evaluated psychological functioning among mutation carriers for longer periods of time.(7) To address this gap, we conducted an observ…”
Background
Body Image After Bilateral Prophylactic Mastectomy: An Integrative Literature Review
McGaughey, A. (2006) · Journal of Midwifery & Women s Health · doi:10.1016/j.jmwh.2006.07.002 · Cited by 64 · see citing works
The course of distress in women at increased risk of breast and ovarian cancer due to an (identified) genetic susceptibility who opt for prophylactic mastectomy and/or salpingo-oophorectomy
Bresser, P. J. C., Seynaeve, C., Gool, A. R. V., Niermeijer, M. F., Duivenvoorden, H. J., van Dooren, S., van Geel, A. N., Menke‐Pluijmers, M. B. E., Klijn, J. G. M., & Tibben, A. (2006) · European Journal of Cancer · doi:10.1016/j.ejca.2006.09.009 · Cited by 63 · see citing works
Self-citation
Predictors and outcomes of contralateral prophylactic mastectomy among breast cancer survivors
Graves, K. D., Peshkin, B. N., Halbert, C. H., DeMarco, T. A., Isaacs, C. J., & Schwartz, M. D. (2006) · Breast Cancer Research and Treatment · doi:10.1007/s10549-006-9423-5 · Cited by 61 · see citing works
“In our previous work, and consistent with the work of others, genetic test result [12,13] and cancer-specific worry or distress [14-16] predicted surgical decision making and risk prevention behaviors.”
Result
Bilateral Prophylactic Mastectomy in Swedish Women at High Risk of Breast Cancer
Arver, B. W., Isaksson, K., Atterhem, H., Baan, A., Bergkvist, L., Brandberg, Y., Ehrencrona, H., Emanuelsson, M., Hellborg, H., Henriksson, K. M., et al. (2011) · Annals of Surgery · doi:10.1097/sla.0b013e318214b55a · Cited by 61 · see citing works
A prospective study of the impact of genetic susceptibility testing for BRCA1/2 or HNPCC on family relationships
van Oostrom, I., Meijers-Heijboer, H. E. J., Duivenvoorden, H. J., Bröcker‐Vriends, A. H. J. T., van Asperen, C. J., Sijmons, R. H., Seynaeve, C., Gool, A. R. V., Klijn, J. G. M., Riedijk, S. R., et al. (2006) · Psycho-Oncology · doi:10.1002/pon.1062 · Cited by 59 · see citing works
“The genetic test results of other family members [2,3], support provided by the partner [4] and changed family relationships due to genetic testing [5] have been reported to affect psychological well-being.”
BackgroundMethodInfluentialSelf-citation
Prevalence of sexual dysfunction after risk-reducing salpingo-oophorectomy
Tucker, P. E., Bulsara, M. K., Salfinger, S. G., Tan, J. J.-S., Green, H., & Cohen, P. A. (2015) · Gynecologic Oncology · doi:10.1016/j.ygyno.2015.11.002 · Cited by 59 · see citing works
Formal and Informal Support Needs of Young Women withBRCAMutations
Werner‐Lin, A. (2008) · Journal of Psychosocial Oncology · doi:10.1080/07347330802359776 · Cited by 57 · see citing works
“In fact, longitudinal evidence suggests distress fluctuates over a 5-year period as individuals struggle to integrate genetic testing information (van Oostrom et al., 2003).”
Background
Improving Service Evaluation in Clinical Genetics: Identifying Effects of Genetic Diseases on Individuals and Families
McAllister, M., Payne, K., Nicholls, S. G., MacLeod, R., Donnai, D., & Davies, L. M. (2007) · Journal of Genetic Counseling · doi:10.1007/s10897-006-9046-3 · Cited by 57 · see citing works
“Van Oostrom et al. (2003) used the Openness to Discuss Cancer in the Family scale in a study investigating psychological impact of BRCA1/2 and showed that long-term distress was associated with poor communication about the test result within the family.”
BackgroundMethod
Risk perception and cancer worries in families at increased risk of familial breast/ovarian cancer
Mellon, S., Gold, R. B., Janisse, J. J., Cichon, M., Tainsky, M. A., Simon, M. S., & Korczak, J. F. (2008) · Psycho-Oncology · doi:10.1002/pon.1370 · Cited by 56 · see citing works
“Other variables that may have applicability to cancer worries and risk perception could be included, such as cancer-specific distress or anxiety [11,18] and other concurrent stressors that families face that may influence risk perception and cancer worries [60].”
Development and Pilot Testing of Two Decision Aids for Individuals Considering Genetic Testing for Cancer Risk
Wakefield, C. E., Meiser, B., Homewood, J., Peate, M., Kirk, J., Warner, B., Lobb, E. A., Gaff, C., & Tucker, K. (2007) · Journal of Genetic Counseling · doi:10.1007/s10897-006-9068-x · Cited by 54 · see citing works
“Prophylactic mastectomy has well-established effects on physical and emotional symptoms, as does prophylactic salpingooophorectomy (Bebbington Hatcher et al., 2001; Fry et al., 2001; van Oostrom et al., 2003; Hallowell et al., 2004).”
Background
Computerised decision aids: A systematic review of their effectiveness in facilitating high-quality decision-making in various health-related contexts
Sheehan, J., & Sherman, K. A. (2011) · Patient Education and Counseling · doi:10.1016/j.pec.2011.11.006 · Cited by 53 · see citing works
“For example, amongst women at hereditary risk of breast cancer, the option of risk-reducing mastectomy can substantially reduce breast cancer risk [3], but this surgery is irreversible, has the potential for complications [4] and negative impacts on body image and psychological wellbeing [5–7], and”
Background
Prognostic Factors for Distress After Genetic Testing for Hereditary Cancer
Voorwinden, J. S., & Jaspers, J. (2015) · Journal of Genetic Counseling · doi:10.1007/s10897-015-9894-9 · Cited by 52 · see citing works
Comparison of proactive and usual approaches to offering predictive testing for BRCA1/2 mutations in unaffected relatives
Evans, D. G., Binchy, A., Shenton, A., Hopwood, P., & Craufurd, D. (2009) · Clinical Genetics · doi:10.1111/j.1399-0004.2008.01146.x · Cited by 52 · see citing works
“Only two studies report to the 3 (20) or 5 (21) year point, and no study has yet assessed testing in the next generation.”
Background
Experience of parental cancer in childhood is a risk factor for psychological distress during genetic cancer susceptibility testing
van Oostrom, I., Meijers-Heijboer, H. E. J., Duivenvoorden, H. J., Bröcker-Vriends, A. H. J. T., van Asperen, C. J., Sijmons, R. H., Seynaeve, C., Gool, A. R. V., Klijn, J. G. M., & Tibben, A. (2006) · Annals of Oncology · doi:10.1093/annonc/mdl069 · Cited by 52 · see citing works
“It has been suggested that risk perception and distress levels are influenced by experiences with cancer in the family [9, 10].”
BackgroundSelf-citation
A systematic review of men's experiences of their partner's mastectomy: coping with altered bodies
Rowland, E., & Metcalfe, A. (2014) · Psycho-Oncology · doi:10.1002/pon.3556 · Cited by 51 · see citing works
“Mastectomised women often suffer from low selfesteem as a result of their absent breast and altered body image [6,7,10,16].”
Background
Passive coping and psychological distress in women adhering to regular breast cancer surveillance
Pieterse, K., van Dooren, S., Seynaeve, C., Bartels, C. C. M., Rijnsburger, A. J., de Koning, H. J., Klijn, J. G. M., van Elderen, T., Tibben, A., & Duivenvoorden, H. J. (2007) · Psycho-Oncology · doi:10.1002/pon.1135 · Cited by 50 · see citing works
Self-citation
‘Cancer doesn’t have an age’: Genetic testing and cancer risk management in BRCA1/2 mutation-positive women aged 18–24
Werner‐Lin, A., Hoskins, L. M., Doyle, M., & Greene, M. H. (2012) · Health An Interdisciplinary Journal for the Social Study of Health Illness and Medicine · doi:10.1177/1363459312442420 · Cited by 49 · see citing works
“As a result, these young women may experience significant challenges in adjusting to their mutation status, leading to greater distress (Van Oostrom et al., 2003; Watson et al., 2004) than that experienced by older mutation-positive women.”
Background
Prognostic factors for hereditary cancer distress six months after BRCA1/2 or HNPCC genetic susceptibility testing
van Oostrom, I., Meijers-Heijboer, H. E. J., Duivenvoorden, H. J., Bröcker‐Vriends, A. H. J. T., van Asperen, C. J., Sijmons, R. H., Seynaeve, C., Gool, A. R. V., Klijn, J. G. M., & Tibben, A. (2006) · European Journal of Cancer · doi:10.1016/j.ejca.2006.08.023 · Cited by 49 · see citing works
Self-citation
Comparing test‐specific distress of susceptibility versus deterministic genetic testing for Alzheimer's disease
Cassidy, M. R., Roberts, J. S., Bird, T. D., Steinbart, E. J., Cupples, L. A., Chen, C. A., Linnenbringer, E. L., & Green, R. C. (2008) · Alzheimer s & Dementia · doi:10.1016/j.jalz.2008.04.007 · Cited by 48 · see citing works
Anticipatory Loss and Early Mastectomy for Young Female BRCA1/2 Mutation Carriers
Hoskins, L. M., & Greene, M. H. (2012) · Qualitative Health Research · doi:10.1177/1049732312458182 · Cited by 47 · see citing works
“However, symptoms of depression and anxiety might increase in mutation-positive women over time (van Oostrom et al., 2003), and hypervigilance about minor physical symptoms that are thought to be related to a possible cancer diagnosis have been identified as burdensome by some carriers (Hoskins,…”
Background
Cancer risk management strategies and perceptions of unaffected women 5 years after predictive genetic testing for BRCA1/2 mutations
Julian‐Reynier, C., Mancini, J., Mouret‐Fourme, E., Gauthier‐Villars, M., Bonadona, V., Berthet, P., Fricker, J., Caron, O., Luporsi, É., & Noguès, C. (2011) · European Journal of Human Genetics · doi:10.1038/ejhg.2010.241 · Cited by 47 · see citing works
What factors may influence psychological well being at three months and one year post BRCA genetic result disclosure?
Bosch, N., Parera, N., Gadea, N., Brunet, J., y Cajal, T. R., Torres, A., Graña, B., Velasco, À., Darder, E., Mensa, I., et al. (2012) · The Breast · doi:10.1016/j.breast.2012.02.004 · Cited by 45 · see citing works
More breast cancer patients prefer BRCA-mutation testing without prior face-to-face genetic counseling
Sie, A. S., van Zelst–Stams, W. A. G., Spruijt, L., Mensenkamp, A. R., Ligtenberg, M. J. L., Brunner, H. G., Prins, J. B., & Hoogerbrugge, N. (2013) · Familial Cancer · doi:10.1007/s10689-013-9686-z · Cited by 45 · see citing works
Living With Genetic Test Results for Hereditary Breast and Ovarian Cancer
Hamilton, R., Williams, J. K., Skirton, H., & Bowers, B. J. (2009) · Journal of Nursing Scholarship · doi:10.1111/j.1547-5069.2009.01279.x · Cited by 45 · see citing works
“For example, participants who chose to act by having a PM or PO remarked on the negative impact on their sexuality. van Oostrom et al. (2003), in a 5-year follow-up study, also reported increased problems with sexual functioning after prophylactic surgery in BRCA-positive women.”
Background
Living with the BRCA genetic mutation: An uncertain conclusion to an unending process
DiMillo, J., Samson, A., Thériault, A., Lowry, S., Corsini, L., Verma, S., & Tomiak, E. M. (2012) · Psychology Health & Medicine · doi:10.1080/13548506.2012.687827 · Cited by 44 · see citing works
“For example, an increase in anxiety and depression (Lerman et al., 1995; van Oostrom et al., 2003), anger and distress (Croyle, Smith, Botkin, Baty, & Nash, 1997; Dorval et al., 2000), affected quality of life, an altered self-concept, vulnerability, stigma (Esplen et al., 2009), increases in…”
Background
A controlled study of mental distress and somatic complaints after risk-reducing salpingo-oophorectomy in women at risk for hereditary breast ovarian cancer
Michelsen, T. M., Dørum, A., & Dahl, A. A. (2009) · Gynecologic Oncology · doi:10.1016/j.ygyno.2008.12.024 · Cited by 43 · see citing works
The impact of a false-positive MRI on the choice for mastectomy in BRCA mutation carriers is limited
Hoogerbrugge, N., Kamm, Y. J. L., Bult, P., Landsbergen, K. M., Bongers, E. M. H. F., Brunner, H. G., Bonenkamp, H. J., de Hullu, J. A., Ligtenberg, M. J., & Boetes, C. (2007) · Annals of Oncology · doi:10.1093/annonc/mdm537 · Cited by 43 · see citing works
“Both in our study and in previous studies, it was found that especially women with a mother with breast cancer have a first preference for prophylactic mastectomy [11].”
Result
Perceiving cancer-risks and heredity-likelihood in genetic-counseling: how counselees recall and interpret BRCA 1/2-test results
Vos, J., Oosterwijk, J., Gómez-García, E. B., Menko, F. H., Jansen, A., Stoel, R. D., van Asperen, C. J., Tibben, A., & Stiggelbout, A. M. (2010) · Clinical Genetics · doi:10.1111/j.1399-0004.2010.01581.x · Cited by 42 · see citing works
Self-citation
Psychological distress in women at risk for hereditary breast cancer: the role of family communication and perceived social support
den Heijer, M., Seynaeve, C., Vanheusden, K., Duivenvoorden, H. J., Bartels, C. C. M., Menke‐Pluymers, M. B. E., & Tibben, A. (2010) · Psycho-Oncology · doi:10.1002/pon.1850 · Cited by 42 · see citing works
“Family communication about hereditary cancer The Openness to Discuss Cancer in the Family Scale [18] adapted to hereditary cancer [14] was used to measure openness of communication about hereditary cancer.”
BackgroundMethodResultSelf-citation
Women's Perceptions of the Personal and Family Impact of Genetic Cancer Risk Assessment: Focus Group Findings
MacDonald, D. J., Sarna, L. P., Weitzel, J. N., & FERRELL, B. R. (2009) · Journal of Genetic Counseling · doi:10.1007/s10897-009-9267-3 · Cited by 41 · see citing works
Decision making, psychological wellbeing and psychosocial outcomes for high risk women who choose to undergo bilateral prophylactic mastectomy – A review of the literature
Glassey, R., Ives, A. D., Saunders, C. M., & Musiello, T. (2016) · The Breast · doi:10.1016/j.breast.2016.05.012 · Cited by 41 · see citing works
“However, qualitative studies have found the situation is more complex and many women are not satisfied or happy with the physical changes caused by surgery [23,28,45].”
Background
Cost-Effectiveness of Testing for Breast Cancer Susceptibility Genes
Holland, M. L., Huston, A. J., & Noyes, K. (2008) · Value in Health · doi:10.1111/j.1524-4733.2008.00418.x · Cited by 41 · see citing works
BRCA1/2 mutation testing in breast cancer patients: a prospective study of the long-term psychological impact of approach during adjuvant radiotherapy
Schlich‐Bakker, K. J., Ausems, M. G. E. M., Schipper, M., ten Kroode, H. F. J., Wárlám-Rodenhuis, C. C., & van den Bout, J. (2007) · Breast Cancer Research and Treatment · doi:10.1007/s10549-007-9680-y · Cited by 40 · see citing works
The impact of receiving genetic test results on general and cancer‐specific psychologic distress among members of an African‐American kindred with a BRCA1 mutation
Kinney, A. Y., Bloor, L. E., Mandal, D. M., Simonsen, S. E., Baty, B. J., Holubkov, R., Seggar, K., Neuhausen, S. L., & Smith, K. R. (2005) · Cancer · doi:10.1002/cncr.21479 · Cited by 40 · see citing works
Support needs and acceptability of psychological and peer consultation: Attitudes of 108 women who had undergone or were considering prophylactic mastectomy
Patenaude, A. F., Orozco, S., Li, X., Kaelin, C. M., Gadd, M., Matory, Y., Mayzel, K., Roche, C. A., Smith, B. L., Farkas, W., et al. (2008) · Psycho-Oncology · doi:10.1002/pon.1279 · Cited by 38 · see citing works
Receiving inconclusive genetic test results: An interpretive description of the BRCA1/2 experience
Maheu, C., & Thorne, S. E. (2008) · Research in Nursing & Health · doi:10.1002/nur.20286 · Cited by 38 · see citing works
“Although researchers have described the experiences of those who received positive results (Bish et al., 2002a; Lim et al., 2004; van Oostrom et al., 2003, 2007), considerably less is known about the experiences of those who receive inconclusive test results (Dorval et al., 2005).”
Background
Experiences of Women Who Underwent Predictive BRCA 1/2 Mutation Testing Before the Age of 30
Brunstrom, K., Murray, A., & McAllister, M. (2015) · Journal of Genetic Counseling · doi:10.1007/s10897-015-9845-5 · Cited by 38 · see citing works
Correction: Population screening for BRCA1/BRCA2 founder mutations in Ashkenazi Jews: proactive recruitment compared with self-referral
Lieberman, S., Tomer, A., Ben-Chetrit, A., Olsha, O., Strano, S., Beeri, R., Koka, S., Fridman, H., Djemal, K., Glick, I., et al. (2019) · Genetics in Medicine · doi:10.1038/s41436-019-0734-4 · Cited by 38 · see citing works
Psychosocial and Behavioral Impact of Genetic Counseling and Testing
Vadaparampil, S. T., Miree, C. A., Wilson, C., & Jacobsen, P. B. (2007) · Breast Disease · doi:10.3233/bd-2007-27106 · Cited by 37 · see citing works
“Data presented by two studies conducted in the Netherlands suggest that regardless of the test result, there may be increases in levels of distress over time associated with psychological distress, as well as personal and family history characteristics [91,92].”
Talking across generations: Family communication aboutBRCA1andBRCA2genetic cancer risk
Young, A. L., Butow, P. N., Rhodes, P., Tucker, K., Williams, R., Healey, E., & Wakefield, C. E. (2019) · Journal of Genetic Counseling · doi:10.1002/jgc4.1055 · Cited by 37 · see citing works
Women's constructions of the 'right time' to consider decisions about risk-reducing mastectomy and risk-reducing oophorectomy
Howard, A. F., Bottorff, J. L., Balneaves, L. G., & Kim‐Sing, C. (2010) · BMC Women s Health · doi:10.1186/1472-6874-10-24 · Cited by 36 · see citing works
“Although these psychological symptoms decline over time for the majority of mutation carriers [19-22], significant psychological distress can persist for others [22,23].”
Background
Exploring the short-term impact of DNA-testing in breast cancer patients: The counselees’ perception matters, but the actual BRCA1/2 result does not
Vos, J., Oosterwijk, J. C., Gómez-García, E. B., Menko, F. H., Collee, M. J., van Asperen, C. J., Jansen, A. M., Stiggelbout, A. M., & Tibben, A. (2011) · Patient Education and Counseling · doi:10.1016/j.pec.2011.04.017 · Cited by 36 · see citing works
“The counselees’ medical history of cancer [3,10,11,35,36] and several sociodemographic characteristics – e.”
BackgroundSelf-citation
Measuring Quality of Life in Cancer Survivors
Victorson, D. E., Cella, D. F., Wagner, L. I., Kramer, L. M. B., & Smith, M. L. (2007) · Springer eBooks · doi:10.1007/978-0-387-34562-8_6 · Cited by 35 · see citing works
Living My Family’s Story
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Authors: van Oostrom, I., Meijers-Heijboer, H., Lodder, L. N., Duivenvoorden, H. J., van Gool, A. R., Seynaeve, C., van der Meer, C. A., Klijn, J. G. M., van Geel, B. N., Burger, C. W., Wladimiroff, J. W., & Tibben, A.
Affiliations: From the Departments of Clinical Genetics, Medical Psychology and Psychotherapy, Medical Oncology, Surgical Oncology, Gynecology and Psychiatry, Erasmus MC, Rotterdam; Center of Human and Clinical Genetics, Leiden University Medical Center, Leiden, the Netherlands.
Leiden University Medical Center (NL)
ORCID: Meijers-Heijboer, Hanne
Burger, Curt W.
Tibben, Aad
Venue: Journal of Clinical Oncology
Publisher: American Society of Clinical Oncology (ASCO)
Published: 2003-10-15
Volume: 21
Issue: 20
Pages: 3867-3874
ISSN: 0732-183X (ISSN-L)
1527-7755
DOI: 10.1200/jco.2003.10.100
OpenAlex: W2123915321
Cited by: 281
References: 52
Citations by year: 2026: 3 · 2025: 5 · 2024: 5 · 2023: 5 · 2022: 5 · 2021: 3 · 2020: 4 · 2019: 9 · 2018: 6 · 2017: 10 · 2016: 11 · 2015: 13 · 2014: 14 · 2013: 22 · 2012: 20
FWCI: 7.83
Type: journal article
Language: en
Open access: closed
Locations: Journal of Clinical Oncology (publishedVersion)
PubMed (publishedVersion)
Pure Amsterdam UMC (publishedVersion)
EUR Research Repository (Erasmus University Rotterdam) (publishedVersion)
Data Archiving and Networked Services (DANS) (submittedVersion)
EUR Research Repository (Erasmus University Rotterdam) (submittedVersion)
Topics: Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › BRCA gene mutations in cancer
Social Sciences › Sociology and Political Science › Family Support in Illness
Health Sciences › Medicine › Oncology › Cancer survivorship and care
Keywords: BRCA1/2 mutation carriers, prophylactic surgery, psychological distress, anxiety, depression, body image, sexual function, risk perception, disclosure of genetic test results, family communication, breast cancer, ovarian cancer, risk factors for distress
MeSH terms: Adult, Anxiety, Body Image, Depression, Female, Genetic Testing, Genetic Carrier Screening, Humans, Mastectomy, Middle Aged, Mutation, Risk Factors, Sexual Behavior, Time Factors, Genes, BRCA1, Genetic Predisposition to Disease, Genes, BRCA2

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Long-Term Psychological Impact of Carrying a BRCA1/2 Mutation and Prophylactic Surgery: A 5-Year Follow-Up Study

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