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One Year Follow-Up of Women Opting for Presymptomatic Testing for BRCA1 and BRCA2: Emotional Impact of the Test Outcome and Decisions on Risk Management (Surveillance or Prophylactic Surgery)
Abstract
Genetic testing enables women at risk for hereditary breast and/or ovarian cancer to find out whether they have inherited the gene mutation (BRCA1/BRCA2), and if so, to opt for frequent surveillance and/or prophylactic surgery (bilateral mastectomy and/or oophorectomy). Here, a follow-up is described for 63 healthy women at 50% risk of being a BRCA1/BRCA2 mutation carrier who underwent genetic testing. The course of distress and problems regarding body image and sexuality up to 1 year after disclosure of the test-outcome were described separately for mutation carriers undergoing mastectomy (n = 14), for mutation carriers opting for surveillance (n = 12) and for non-mutation carriers (n = 37). Furthermore, we analyzed whether women opting for prophylactic mastectomy differed from those opting for close surveillance with respect to biographical characteristics, experiences with cancer in relatives and personality. Women opting for prophylactic mastectomy had significantly higher distress levels than mutation carriers who opted for surveillance, and the non-mutation carriers. This difference in levels of distress was highest at pre- and post-test and had almost disappeared at 1-year follow-up. Besides, mutation carriers opting for prophylactic mastectomy were more often in their thirties, more often had young children and had a longer awareness of the genetic nature of cancer in the family than those opting for regular surveillance. Adverse effects were observed in women who underwent prophylactic mastectomy (mostly in combination with immediate breast reconstruction) regarding the perception of how their breast region looked like and felt, the intimate relationship and physical wellbeing whereas women opting for prophylactic mastectomy reported more distress than the other women in the study, their distress levels had significantly decreased 6 months or longer after surgery, possibly due to the significant risk reduction of developing breast cancer. This might explain, why most women who underwent prophylactic mastectomy were satisfied with this decision, despite a perceived negative impact on body image, the intimate relationship and physical wellbeing.
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“Studies have shown that the majority of women following PM reported decreased (hereditary) cancer related distress while other psychosocial functioning does not appear to be significantly affected in a negative way [5,8-10].”
From Standard psychological consultations and follow up for women at increased risk of hereditary breast cancer considering prophylactic mastectomy (2009) · cites this paper as [10]
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Metcalfe, K. A., Birenbaum‐Carmeli, D., Lubiński, J., Gronwald, J., Lynch, H. T., Møller, P., Ghadirian, P., Foulkes, W. D., Klijn, J. G. M., Friedman, E., et al. (2008) · International Journal of Cancer · doi:10.1002/ijc.23340 · Cited by 342
Self-citationA systematic review of perceived risks, psychological and behavioral impacts of genetic testing
Heshka, J., Palleschi, C., Howley, H. E. A., Wilson, B. J., & Wells, P. S. (2008) · Genetics in Medicine · doi:10.1097/gim.0b013e31815f524f · Cited by 327
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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., et al. (2003) · Journal of Clinical Oncology · doi:10.1200/jco.2003.10.100 · Cited by 281
Self-citationRisk-reducing mastectomy for the prevention of primary breast cancer
Carbine, N. E., Lostumbo, L., Wallace, J., & Ko, H. (2018) · Cochrane Database of Systematic Reviews · doi:10.1002/14651858.cd002748.pub4 · Cited by 270
Effect of genetic cancer risk assessment on surgical decisions at breast cancer diagnosis.
Weitzel, J., McCaffrey, S., Nedelcu, R., Macdonald, D., Blazer, K., & Cullinane, C. (2003) · Archives of Surgery · doi:10.1001/archsurg.138.12.1323 · Cited by 172
“Published observations of unaffected BRCA mutation carriers indicate that 17% to 50% opt for risk reduction breast surgery.(25,26,35,36) To our knowledge, there are no published studies of the risk reduction surgery choices of women who are determined to be BRCA carriers after the completion of breast cancer treatment…”
BackgroundEvans, D. G., Lalloo, F. I., Ashcroft, L., Shenton, A., Clancy, T., Baildam, A. D., Brain, A., Hopwood, P., & Howell, A. (2009) · Cancer Epidemiology Biomarkers & Prevention · doi:10.1158/1055-9965.epi-09-0171 · Cited by 147
“The results of this study show that it is inappropriate to assume that uptake after as little as 1 to 3 years of follow-up will be the definitive figure for all women (22-30).”
BackgroundMurray, M. L., Cerrato, F. E., Bennett, R. L., & Jarvik, G. P. (2011) · Genetics in Medicine · doi:10.1097/gim.0b013e318226fc15 · Cited by 140
Metcalfe, K. A., Cil, T. D., Semple, J. L., Li, L. D. X., Bagher, S., Zhong, T., Virani, S., Narod, S. A., & Pal, T. (2015) · Annals of Surgical Oncology · doi:10.1245/s10434-015-4761-3 · Cited by 122
Schwartz, M. D., Kaufman, E. A., Peshkin, B. N., Isaacs, C. J., Hughes, C., DeMarco, T. A., Finch, C., & Lerman, C. (2003) · Journal of Clinical Oncology · doi:10.1200/jco.2003.01.088 · Cited by 120
Skytte, A., Gerdes, A., Andersen, M., Sunde, L., Brøndum‐Nielsen, K., Waldstrøm, M., Kølvraa, S., & Crüger, D. G. (2010) · Clinical Genetics · doi:10.1111/j.1399-0004.2009.01329.x · Cited by 118
Gopie, J. P., Mureau, M. A. M., Seynaeve, C., ter Kuile, M. M., Menke‐Pluymers, M. B. E., Timman, R., & Tibben, A. (2012) · Familial Cancer · doi:10.1007/s10689-012-9588-5 · Cited by 118
“Drawbacks of the previously reported studies are a retrospective design [10, 12, 15, 19], and for the few available prospective studies performed in unaffected BRCA1/2 mutation carriers a limited follow-up period, maximally being up to one year postoperatively [9, 14, 16, 20].”
InfluentialSelf-citationSatisfaction with Prophylactic Mastectomy and Breast Reconstruction in Genetically Predisposed Women
Bresser, P. J. C., Seynaeve, C., Gool, A. R. V., Brekelmans, C. T. M., Meijers-Heijboer, H. E. J., van Geel, A. N., Menke‐Pluijmers, M. B. E., Duivenvoorden, H. J., Klijn, J. G. M., & Tibben, A. (2006) · Plastic & Reconstructive Surgery · doi:10.1097/01.prs.0000217383.99038.f5 · Cited by 117
“Being satisfied with result of PM/BR 113 68 (60) 13 (12) 32 (28) Would opt for PM again 112 106 (95) 5 (5) 1 (1) Would opt for BR again 112 89 (80) 12 (11) 11 (10) Feeling sufficiently informed 112 95 (85) 1 (1) 16 (14) Surgery did not meet expectations 112 35 (31) 8 (7) 69 (62) Complications‡ 113 48 (43) 2 (2) 63 (56…”
Self-citationWainberg, S., & Husted, J. (2004) · Cancer Epidemiology Biomarkers & Prevention · doi:10.1158/1055-9965.1989.13.12 · Cited by 116
“The studies recruited women who were involved in ongoing genetic research protocols (2) or who were members of families know to carry a BRCA mutation (9, 13, 20, 21).”
InfluentialGenetic susceptibility testing from a stress and coping perspective
Gooding, H. C., Organista, K. C., Burack, J. H., & Biesecker, B. B. (2005) · Social Science & Medicine · doi:10.1016/j.socscimed.2005.08.041 · Cited by 107
Uptake, Time Course, and Predictors of Risk-Reducing Surgeries in BRCA Carriers
Beattie, M. S., Crawford, B., Lin, F., Vittinghoff, E., & Ziegler, J. L. (2009) · Genetic Testing and Molecular Biomarkers · doi:10.1089/gtmb.2008.0067 · Cited by 96
“In prior studies of risk-reducing surgeries, RRM uptake in BRCA carriers has ranged from 0% to 50% (Lerman et al. , 2000; Lodder et al. , 2002; Botkin et al. , 2003; Wainberg and Husted, 2004; Kram et al. , 2006; Metcalfe et al. , 2008), and RRSO uptake has ranged from 12% to 78% (Lerman et al. ,…”
InfluentialBradbury, A. R., Ibe, C. N., Dignam, J. J., Cummings, S. A., Verp, M. S., White, M. A., Artioli, G., Dudlicek, L., & Olopade, O. I. (2008) · Genetics in Medicine · doi:10.1097/gim.0b013e318163487d · Cited by 93
Reproductive Decision‐Making in Women with BRCA1/2 Mutations
Chan, J. L., Johnson, L. N. C., Sammel, M. D., DiGiovanni, L., Voong, C., Domchek, S. M., & Gracia, C. R. (2016) · Journal of Genetic Counseling · doi:10.1007/s10897-016-0035-x · Cited by 88
“2002), it appears that they experiencemore distress following disclosure of a BRCAmutation (Lodder et al. 2002; Watson et al. 2004).”
BackgroundInfluentialPredictive genetic testing for BRCA1/2 in a UK clinical cohort: three-year follow-up
Foster, C., Watson, M., Eeles, R., Eccles, D., Ashley, S., Davidson, R., Mackay, J., Morrison, P., Hopwood, P., & Evans, D. (2007) · British Journal of Cancer · doi:10.1038/sj.bjc.6603610 · Cited by 87
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“Uptake of cancer risk reduction strategies have also been evaluated in women with a BRCA1 or BRCA2 mutation who received genetic testing in clinical cancer genetics programs [12–16].”
BackgroundLynch, H. T., Snyder, C., Lynch, J. F., Karatoprakli, P., Trowonou, A., Metcalfe, K. A., Narod, S. A., & Gong, G. (2006) · Cancer Genetics and Cytogenetics · doi:10.1016/j.cancergencyto.2005.07.011 · Cited by 85
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
Self-citationHoward, A. F., Balneaves, L. G., & Bottorff, J. L. (2009) · Journal of Genetic Counseling · doi:10.1007/s10897-009-9245-9 · Cited by 82
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 83
“The majority of research suggests that most women do not experience sharp elevations in general distress after being informed that they are mutation carriers [8–18].”
BackgroundThe use of preventive measures among healthy women who carry a BRCA1 or BRCA2 mutation
Metcalfe, K., Snyder, C. L., Seidel, J., Hanna, D., Lynch, H., & Narod, S. (2005) · Familial Cancer · doi:10.1007/s10689-005-4215-3 · Cited by 83
“In Canada, 15% of mutation carriers elected to undergo prophylactic mastectomy [15], and in the Netherlands 54% of the women had a prophylactic mastectomy [16].”
BackgroundWakefield, C. E., Meiser, B., Homewood, J., Peate, M., Taylor, A., Lobb, E. A., Kirk, J., Young, M., Williams, R., Dudding, T. E., et al. (2007) · Breast Cancer Research and Treatment · doi:10.1007/s10549-007-9539-2 · Cited by 77
“Conversely, proven non-carriers of BRCA mutations, and their offspring, are only at population risk of developing cancer and do not need to consider the increased surveillance and preventative options offered to carriers, saving the costs, concerns and inconvenience of unnecessary procedures [6].”
BackgroundMadalinska, J. B., van Beurden, M., Bleiker, E. M. A., Valdimarsdottir, H. B., Lubsen-Brandsma, L. A. C., Massuger, L. F. A. G., Mourits, M. J. E., Gaarenstroom, K. N., van Dorst, E. B. L., van der Putten, H. W. H. M., et al. (2007) · Journal of Clinical Oncology · doi:10.1200/jco.2006.07.4922 · Cited by 77
Impact of screening for breast cancer in high-risk women on health-related quality of life
Rijnsburger, A. J., Essink‐Bot, M., van Dooren, S., Borsboom, G. J. J. M., Seynaeve, C., Bartels, C. C. M., Klijn, J. G. M., Tibben, A., & de Koning, H. J. (2004) · British Journal of Cancer · doi:10.1038/sj.bjc.6601912 · Cited by 76
“Lodder et al (2002) showed that women opting for prophylactic mastectomy had significant higher distress levels than mutation carriers who opted for surveillance, but their distress levels decreased significantly 6 months or longer after surgery, possibly due to the significant risk reduction of…”
BackgroundSelf-citationClaes, 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
“These findings are largely in line with other reports (Lodder et al., 2002; Schwartz et al., 2002).”
BackgroundResultInfluentialMetcalfe, K., Poll, A., O'Connor, A., Gershman, S., Armel, S., Finch, A., Demsky, R., Rosen, B., & Narod, S. (2007) · Clinical Genetics · doi:10.1111/j.1399-0004.2007.00859.x · Cited by 66
“Previous research has suggested that rates of uptake of prophylactic mastectomy range from 3% in the United States to 54% (26) in the Netherlands (27).”
BackgroundNarod, S. A. (2014) · Nature Reviews Clinical Oncology · doi:10.1038/nrclinonc.2014.3 · Cited by 72
Risk-reducing strategies for women carrying brca1/2 mutations with a focus on prophylactic surgery
Salhab, M., Bismohun, S., & Mokbel, K. (2010) · BMC Women s Health · doi:10.1186/1472-6874-10-28 · Cited by 70
“Interestingly, their distress levels seem to significantly decrease 6 months or longer following surgery, possibly due to the significant risk reduction of developing breast cancer [77].”
BackgroundGopie, J. P., ter Kuile, M. M., Timman, R., Mureau, M. A. M., & Tibben, A. (2013) · Psycho-Oncology · doi:10.1002/pon.3377 · Cited by 69
“[28], and it is described elsewhere [29].”
Psychiatric implications of cancer genetic testing
Hirschberg, A., Chan–Smutko, G., & Pirl, W. F. (2014) · Cancer · doi:10.1002/cncr.28879 · Cited by 69
Hefferon, K., Grealy, M., & Mutrie, N. (2009) · Journal of Humanistic Psychology · doi:10.1177/0022167809341996 · Cited by 68
“Negative physical changes to the female body included reduced sensitivity, scaring, grieving for the breast, and dislike of intimacy surrounding the breast (Hopwood et al., 2000; Lodder et al., 2002).”
BackgroundPsychological distress in women at increased risk for breast cancer: the role of risk perception
van Dooren, S., Rijnsburger, A. J., Seynaeve, C., Duivenvoorden, H. J., Essink‐Bot, M., Tilanus‐Linthorst, M. M. A., de Koning, H. J., & Tibben, A. (2004) · European Journal of Cancer · doi:10.1016/j.ejca.2004.05.004 · Cited by 70
“In a previous study at our institution, we found lower distress scores in mutation carriers opting for surveillance than in mutation carriers opting for bilateral prophylactic mastectomy [33].”
BackgroundSelf-citationPhillips, K., Jenkins, M. A., Lindeman, G. J., McLachlan, S., McKinley, J. M., Weideman, P. C., Hopper, J. L., Friedlander, M., & kConFab Investigators (2006) · Clinical Genetics · doi:10.1111/j.1399-0004.2006.00665.x · Cited by 68
“The results of this study and another Australian study of high-risk women (33) suggest that uptake of BM in Australia is more consistent with the lower rates seen in North America (25, 26, 29) than the higher rates seen in studies from the Netherlands (27, 28).”
Resultvan Dijk, S., van Roosmalen, M. S., Otten, W., & Stalmeier, P. F. M. (2008) · Journal of Clinical Oncology · doi:10.1200/jco.2006.10.5494 · Cited by 67
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
“This study suggests that while many women correctly anticipate many of the visible sequelae of risk-reducing surgery, it is also apparent that many remain unprepared for the changes in the way their bodies feel [22, 25, 27, 37] and the ways they may feel about themselves [16, 22, 26, 28, 39] following surgery.”
BackgroundA multicenter study of supportive‐expressive group therapy for women with BRCA1/BRCA2 mutations
Esplen, M. J., Hunter, J., Leszcz, M., Warner, E., Narod, S. A., Metcalfe, K. A., Glendon, G., Butler, K., Liede, A., Young, M. A., et al. (2004) · Cancer · doi:10.1002/cncr.20661 · Cited by 68
“Numerous challenges arise after the identification of a BRCA1/BRCA2 mutation, including the burden of disseminating this knowledge to family members, worry about vulnerability to breast and ovarian carcinoma, and decision-making regarding prophylactic surgery and chemoprevention options.(3,4) Needs assessment surveys…”
BackgroundBody 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
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
Self-citationPredictors 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
“In studies conducted in Europe, rates of prophylactic mastectomy among BRCA1/2 carriers unaffected with breast cancer are much higher, around 50% [32, 33].”
Howard, A. F., Balneaves, L. G., Bottorff, J. L., & Rodney, P. (2010) · Qualitative Health Research · doi:10.1177/1049732310387798 · Cited by 55
“Also complicating these decisions are the unique risks associated with RR surgery on self-identity, body image, and femininity (Claes et al.; Fang et al.; Lodder et al., 2002; Matloff, Barnett, & Bober, 2009).”
BackgroundMetcalfe, K. A., Poll, A., Llacuachaqui, M., Nanda, S., Tulman, A., Mian, N. C., Sun, P., & Narod, S. (2010) · Clinical Genetics · doi:10.1111/j.1399-0004.2010.01499.x · Cited by 54
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“[5 5 ],”
BackgroundTime to reconsider subcutaneous mastectomy for breast-cancer prevention?
Metcalfe, K. A., Semple, J. L., & Narod, S. A. (2005) · The Lancet Oncology · doi:10.1016/s1470-2045(05)70210-2 · Cited by 49
Claes, E., Evers‐Kiebooms, G., Boogaerts, A., Decruyenaere, M., Denayer, L., & Legius, E. (2004) · Genetic Testing · doi:10.1089/109065704323015996 · Cited by 48
Kinney, A. Y., Simonsen, S. E., Baty, B. J., Mandal, D. M., Neuhausen, S. L., Seggar, K., Holubkov, R., Bloor, L. E., & Smith, K. R. (2006) · Journal of Genetic Counseling · doi:10.1007/s10897-006-9026-7 · Cited by 47
“Our finding that utilization of prophylactic oophorectomy among mutation carriers was higher than utilization of prophylactic mastectomy is consistent with others (Botkin et al., 2003 ;L ermanet al., 2000; Lodder et al., 2002; Meijers-Heijboer et al., 2003; Scheuer et al., 2002; Schwartz et al., 2003).”
BackgroundResultGaba, F., & Manchanda, R. (2020) · Best Practice & Research Clinical Obstetrics & Gynaecology · doi:10.1016/j.bpobgyn.2020.01.006 · Cited by 46
Claes, E., Evers‐Kiebooms, G., Decruyenaere, M., Denayer, L., Boogaerts, A., Philippe, K., & Legius, E. (2005) · Behavioral Medicine · doi:10.3200/bmed.31.3.93-106 · Cited by 47
Time to prophylactic surgery in BRCA1/2 carriers depends on psychological and other characteristics
Julian‐Reynier, C., Bouhnik, A., Mouret-Fourme, E., Gauthier‐Villars, M., Berthet, P., Lasset, C., Fricker, J., Caron, O., Gesta, P., Luporsi, É., et al. (2010) · Genetics in Medicine · doi:10.1097/gim.0b013e3181f48d1c · Cited by 46
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Patient compliance based on genetic medicine: a literature review
Schneider, K. I., & Schmidtke, J. (2013) · Journal of Community Genetics · doi:10.1007/s12687-013-0160-2 · Cited by 46
“In addition to this, distress levels that were elevated initially after genetic testing normalized in patients tested for BRCA and HNPCCmutations after 1 year (Lodder et al. 2002; Aktan-Collan et al. 2001).”
BackgroundVadaparampil, S. T., Ropka, M. E., & Stefanek, M. E. (2005) · Familial Cancer · doi:10.1007/s10689-004-1446-7 · Cited by 45
“For example, in a study of women with a personal history of cancer and their first-degree relatives awaiting BRCA mutation test results, women identified as high monitors on the Miller behavioral style scale at baseline interview experienced more anxiety on the State Anxiety subscale of the state trait anxiety invento…”
BackgroundInfluentialRisk-reducing surgery in women with familial susceptibility for breast and/or ovarian cancer
Antill, Y. C., Reynolds, J., Young, M., Kirk, J., Tucker, K., Bogtstra, T. L., Wong, S., Dudding, T. E., Iulio, J. D., & Phillips, K. (2006) · European Journal of Cancer · doi:10.1016/j.ejca.2005.11.020 · Cited by 41
Adherence to Recommended Risk Management among Unaffected Women with a BRCA Mutation
Buchanan, A. H., Voils, C. I., Schildkraut, J. M., Fine, C. A., Horick, N., Marcom, P. K., Wiggins, K., & Skinner, C. S. (2016) · Journal of Genetic Counseling · doi:10.1007/s10897-016-9981-6 · Cited by 40
“Yet, this literature is often limited by short follow-up time (Claes et al., 2005; Kinney et al., 2006; Lerman et al., 2000; Lodder et al., 2002; Peshkin et al., 2002; Schwartz et al., 2003), small sample size (Botkin et al., 2003; Bradbury et al., 2008; Claes et al., 2005; Kinney et al., 2006;…”
Metcalfe, K. A., Ghadirian, P., Rosen, B. P., Foulkes, W. D., Kim‐Sing, C., Eisen, A. F., Ainsworth, P., Horsman, D. E., Maugard, C. M., Provencher, D. M., et al. (2007) · PubMed Central · Cited by 39
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
“Some authors have suggested that psychological consultation should be ‘mandatory’ for women who consider PM [17] or should be provided for women who experience difficulty adjusting to PM surgery [18,22].”
A systematic review of women’s satisfaction and regret following risk-reducing mastectomy
Braude, L., Kirsten, L., Gilchrist, J., & Juraskova, I. (2017) · Patient Education and Counseling · doi:10.1016/j.pec.2017.06.032 · Cited by 39
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 41
“Coupled with a lack of effective screening for women under 30 years of age it has been suggested that young BRCA 1/2 carriers may find it harder to adjust to their carrier status than older women (Lodder et al. 2002; van Oostrom et al. 2003; Watson et al. 2004).”
BackgroundConditions and Consequences of a BRCA Mutation in Young, Single Women of Childbearing Age
Hamilton, R., & Hurley, K. E. (2010) · Oncology nursing forum · doi:10.1188/10.onf.627-634 · Cited by 38
“Prior research has shown that younger women tend to be more distressed after genetic testing for the BRCA mutation than older women (Lodder et al., 2002; Watson et al., 2004).”
Hereditary Diffuse Gastric Cancer
Schrader, K. A., & Huntsman, D. D. (2010) · Cancer treatment and research · doi:10.1007/978-1-4419-6033-7_3 · Cited by 36
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
International Perspectives on Genetic Counseling and Testing for Breast Cancer Risk
Meiser, B., Gaff, C., Julian‐Reynier, C., Biesecker, B. B., Esplen, M. J., Vodermaier, A., & Tibben, A. (2007) · Breast Disease · doi:10.3233/bd-2007-27107 · Cited by 33
“…countries in uptake of prophylactic oophorectomy have also been reported: Australia − 23% to 29% [4,96,114]; Germany − 8% of at risk women [124]; Netherlands − 64% [79] and 50% [70] of carriers; UK − 25% [40]; Canada − 54 % of carriers [86]; and the US − 13% to 51% of carriers [15,62, 101,106].”
Gaba, F., Blyuss, O. B., Chandrasekaran, D., Osman, M. A. M., Goyal, S., Gan, C., Izatt, L., Tripathi, V., Esteban, I., McNicol, L. B., et al. (2020) · BJOG An International Journal of Obstetrics & Gynaecology · doi:10.1111/1471-0528.16424 · Cited by 32
Heijer, M. D., van Asperen, C. J., Harris, H. J., Nippert, I., Schmidtke, J., Bouhnik, A., Julian‐Reynier, C., Evans, D. G., & Tibben, A. (2013) · European Journal of Cancer · doi:10.1016/j.ejca.2013.04.025 · Cited by 31
Nelson, J. A., Tchou, J. C., Domchek, S. M., Sonnad, S. S., Serletti, J. M., & Wu, L. C. (2012) · Journal of Plastic Reconstructive & Aesthetic Surgery · doi:10.1016/j.bjps.2012.05.001 · Cited by 30
Tong, A., Kelly, S. P., Nusbaum, R. H., Graves, K. D., Peshkin, B. N., Valdimarsdottir, H. B., Wood, M. E., McKinnon, W. C., Garber, J. E., McCormick, S. R., et al. (2014) · Psycho-Oncology · doi:10.1002/pon.3560 · Cited by 29
“Given that intentions may be partly driven by inaccurate risk perceptions and distress and that these intentions impact subsequent decisions [12,45], genetic counseling should include explicit discussion of surgical intentions, distress, and decision making.”
BackgroundAcceptance of Preventive Surgeries by Israeli Women Who had Undergone BRCA Testing
Kram, V., Peretz, T., & Sagi, M. (2006) · Familial Cancer · doi:10.1007/s10689-006-0002-z · Cited by 29
“different from the Dutch studies which indicated a high acceptance rate of PM [18, 27], or the English study”
How medical choices influence quality of life of women carrying a BRCA mutation
Harmsen, M. G., Hermens, R., Prins, J. B., Hoogerbrugge, N., & de Hullu, J. A. (2015) · Critical Reviews in Oncology/Hematology · doi:10.1016/j.critrevonc.2015.07.010 · Cited by 28
“Lodder et al. (2002)”
Crotser, C. B., & Boehmke, M. M. (2009) · Journal of Cancer Survivorship · doi:10.1007/s11764-008-0077-7 · Cited by 28
BRCA1/2 testing in hereditary breast and ovarian cancer families III: Risk perception and screening
McInerney-Leo, A. M., Hadley, D. W., Kase, R. G., Giambarresi, T. R., Struewing, J. P., & Biesecker, B. B. (2006) · American Journal of Medical Genetics Part A · doi:10.1002/ajmg.a.31432 · Cited by 28
Gilbert, E., Zabor, E. C., Stempel, M. M., Mangino, D. A., Heerdt, A. S., & Pilewskie, M. L. (2017) · Annals of Surgical Oncology · doi:10.1245/s10434-017-5976-2 · Cited by 29
Fang, C. Y., Miller, S. M., Malick, J., Babb, J. S., Engstrom, P. F., & Daly, M. B. (2003) · Preventive Medicine · doi:10.1016/s0091-7435(03)00163-4 · Cited by 28
Tan, M. B., Bleiker, E. M., Menke-Pluymers, M. B., Van Gool, A. R., van Dooren, S., Van Geel, B. N., Tilanus-Linthorst, M. M., Bartels, K. C., Klijn, J. G., Brekelmans, C. T., et al. (2009) · Hereditary Cancer in Clinical Practice · doi:10.1186/1897-4287-7-6 · Cited by 27
Self-citationRisk-reducing mastectomy in BRCA1/2 mutation carriers: Factors influencing uptake and timing
van Driel, C. M. G., Eltahir, Y., de Vries, J., Jaspers, J., Oosterwijk, J. C., Mourits, M. J. E., & de Bock, G. H. (2013) · Maturitas · doi:10.1016/j.maturitas.2013.10.017 · Cited by 27
Choice of Management of Southern Chinese BRCA Mutation Carriers
Kwong, A., Wong, C. H., Shea, C., Suen, D., & Choi, C. L. Y. (2010) · World Journal of Surgery · doi:10.1007/s00268-010-0477-5 · Cited by 28
“It has been shown that women who choose prophylactic mastectomy tend to be younger [55, 56] and have children [30, 57].”
BackgroundEvaluation of mathematical models for breast cancer risk assessment in routine clinical use
Fasching, P., Bani, M., Nestle-Krämling, C., Goecke, T., Niederacher, D., Beckmann, M., & Lux, M. (2007) · European Journal of Cancer Prevention · doi:10.1097/cej.0b013e32801023b3 · Cited by 29
“K Individualized psychological support (Lodder et al., 2002; Butow et al., 2003; Lynch et al., 2003).”
Genetic Testing by Cancer Site
Shannon, K. M., & Chittenden, A. B. (2012) · The Cancer Journal · doi:10.1097/ppo.0b013e318260946f · Cited by 25
“Factors that are related to high posttest distress include a high level of pretest anxiety, higher pretest perceived risk, and whether they are opting for prophylactic surgery to reduce their risk.(59,63,65) It is important to note, however, that even in women who experienced distress after receipt of genetic test inf…”
BackgroundIntensive radiologic surveillance: a focus on the psychological issues.
Warner, E. (2004) · Annals of Oncology · doi:10.1093/annonc/mdh657 · Cited by 27
“The situation is further complicated by the fact that, as previously mentioned [16, 17], mutation carriers who i45”
BackgroundJeffers, L., Reid, J., Fitzsimons, D., Morrison, P. J., & Dempster, M. (2019) · Cochrane Database of Systematic Reviews · doi:10.1002/14651858.cd012894.pub2 · Cited by 24
“Lodder 2002 {published data only} Lodder LN, Frets PG, Trijsburg RW, Meijers-Heijboer EJ, Klijn JG, Seynaeve C, et al. One year follow-up of women opting for presymptomatic testing for BRCA1 and BRCA2: emotional impact of the test outcome and decisions on risk management (surveillance or…”
BackgroundMethodInfluentialKwong, A., & Chu, A. T.-W. (2012) · Asian Pacific Journal of Cancer Prevention · doi:10.7314/apjcp.2012.13.5.2241 · Cited by 24
Moldovan, R., Keating, S., & Clancy, T. (2014) · Familial Cancer · doi:10.1007/s10689-014-9761-0 · Cited by 23
Heightened perception of breast cancer risk in young women at risk of familial breast cancer
kConFab Investigators, Glassey, R., O’Connor, M., Ives, A. D., Saunders, C. M., O’Sullivan, S., & Hardcastle, S. J. (2017) · Familial Cancer · doi:10.1007/s10689-017-0001-2 · Cited by 23
Uterine and Tubal Lavage for Earlier Cancer Detection Using an Innovative Catheter
Maritschnegg, E., Heitz, F., Pecha, N., Bouda, J., Trillsch, F., Grimm, C., Vanderstichele, A., Agreiter, C., Harter, P., Obermayr, E., et al. (2018) · International Journal of Gynecological Cancer · doi:10.1097/igc.0000000000001361 · Cited by 23
Oncogénétique: estimation des besoins de la population en France pour les dix ans à venir
Bonaïti‐Pellié, C., Andrieu, N., Arveux, P., Bonadona, V., Buecher, B., Delpech, M., Jolly, D., Julian‐Reynier, C., Luporsi, É., Noguès, C., et al. (2009) · Bulletin du Cancer · doi:10.1684/bdc.2009.0943 · Cited by 22
“Des mastectomies prophylactiques bilatérales ont été réalisées pour 5% des femmes porteuses de mutations BRCA1/2, ce qui est nettement au-dessous des chiffres internationaux (Pays Bas : 55%, UK : 57%-34% avec une hétérogénéité selon les centres, Australie : 10-11%, USA : 11%, Pologne : 5%) [23,54-59] et souligne la né…”
BackgroundStolier, A. J., & Corsetti, R. L. (2005) · The American Surgeon · doi:10.1177/000313480507101209 · Cited by 22
Hoskins, L. M., & Werner‐Lin, A. (2012) · Journal of Genetic Counseling · doi:10.1007/s10897-012-9521-y · Cited by 23
“As a result, these young women may experience significant challenges in adjusting to their mutation status, leading to greater HBOC-related distress (Lodder et al. 2002; van Oostrom et al. 2003; Watson et al. 2004) than older mutation-positive women.”
BackgroundA Counselling Model for BRCA1/2 Genetic Susceptibility Testing
van Oostrom, I., & Tibben, A. (2004) · Hereditary Cancer in Clinical Practice · doi:10.1186/1897-4287-2-1-19 · Cited by 21
Quality-of-life implications of risk-reducing cancer surgery
Altman, A. M., Hui, J. Y. C., & Tuttle, T. M. (2018) · British journal of surgery · doi:10.1002/bjs.10725 · Cited by 21
Gaba, F., Blyuss, O. B., Tan, A., Munblit, D., Oxley, S. G., Khan, K. S., Legood, R., & Manchanda, R. (2023) · Cancers · doi:10.3390/cancers15051625 · Cited by 21
McQuirter, M., Castiglia, L. L., Loiselle, C. G., & Wong, N. (2010) · Oncology nursing forum · doi:10.1188/10.onf.313-320 · Cited by 20
“…risk for developing breast cancer have been associated with a higher probability of undergoing preventive surgery (Bebbington Hatcher & Fallowfield, 2003; De Leeuw, van Vliet, & Auseums, 2008; Hallowell, 1998; Lodder et al., 2002; Stefanek, Helzlsouer, Wilcox, & Houn, 1995; van Dijk et al., 2003).”
BackgroundRelationship satisfaction predicts sexual activity following risk-reducing salpingo-oophorectomy
Lorenz, T. K., McGregor, B., & Swisher, E. M. (2014) · Journal of Psychosomatic Obstetrics & Gynecology · doi:10.3109/0167482x.2014.899577 · Cited by 20
Segerer, R. K., Peschel, C., Kämmerer, U., Häussler, S., Wöckel, A., & Segerer, S. E. (2019) · Breast Care · doi:10.1159/000503370 · Cited by 19
Who is prone to high levels of distress after prophylactic mastectomy and/or salpingo-ovariectomy?
Bresser, P. J. C., Van Gool, A. R., Seynaeve, C., Duivenvoorden, H. J., Niermeijer, M. F., van Geel, A. N., Menke, M., Klijn, J. G. M., & Tibben, A. (2007) · Annals of Oncology · doi:10.1093/annonc/mdm274 · Cited by 18
“From previous studies it is known that mutation carriers opting for PM experience higher distress levels than those opting for surveillance, which is probably influenced by several factors (more or longer awareness of the genetic cancer susceptibility in the family, younger age and greater probability of having young…”
BackgroundSelf-citationShamsunder, M. G., Polanco, T. O., McCarthy, C. M., Allen, R. J., Matros, E., Coriddi, M., Mehrara, B. J., Pusic, A. L., & Nelson, J. A. (2021) · Plastic & Reconstructive Surgery · doi:10.1097/prs.0000000000008521 · Cited by 18
Werner-Lin, A. (2010) · Journal of the Society for Social Work and Research · doi:10.5243/jsswr.2010.3 · Cited by 21
“…mastectomy are more likely to be younger than those pursuing oophorectomy (Botkin, Smith, & Croyle, 2003) and are more likely to have both young children and extensive family histories of breast and ovarian cancer (Lodder et al., 2002; Meijers-Heijboer et al., 2000; Scheuer et al. 2002).”
BackgroundThis, P., de la Rochefordière, A., Savignoni, A., Falcou, M. C., Tardivon, A. A., Thibault, F. E., Alran, S., Fourchotte, V., Fitoussi, A. D., Couturaud, B., et al. (2012) · Familial Cancer · doi:10.1007/s10689-012-9539-1 · Cited by 19
“In the literature, a family history of breast and ovarian cancer [29, 30], a family history of breast cancer before the age of 40 [30], and mothers caring for young children [30] are reported factors influencing the woman’s decision.”
Background
Metadata
- Authors
- Lodder, L. N., Frets, P. G., Trijsburg, R. W., Meijers-Heijboer, E. J., Klijn, J. G., Seynaeve, C., van Geel, A. N., Tilanus, M. M., Bartels, C. C., Verhoog, L. C., Brekelmans, C. T., Burger, C. W., & Niermeijer, M. F.
- Affiliations
- Erasmus University Rotterdam (NL)
- Academisch Ziekenhuis Rotterdam (NL)
- Erasmus MC (NL)
- ORCID
- Burger, Curt W
- Venue
- Breast Cancer Research and Treatment
- Published
- 2002-05
- Volume
- 73
- Issue
- 2
- Pages
- 97-112
- ISSN
- 0167-6806 (ISSN-L)
- 1573-7217
- OpenAlex
- W1994789648
- Cited by
- 175
- References
- 33
- Citations by year
- 2025: 1 · 2024: 3 · 2023: 4 · 2022: 3 · 2021: 3 · 2020: 4 · 2019: 6 · 2018: 5 · 2017: 4 · 2016: 9 · 2015: 3 · 2014: 7 · 2013: 7 · 2012: 10
- FWCI
- 5.48
- Type
- journal article
- Language
- en
- Open access
- closed
- Licence
- Locations
- Breast Cancer Research and Treatment (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)
- Radboud Repository (Radboud University) (submittedVersion)
- Topics
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › BRCA gene mutations in cancer
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Women's cancer prevention and management
- Social Sciences › Psychology › Clinical Psychology › Family Support in Illness
- Keywords
- BRCA1, BRCA2, presymptomatic genetic testing, hereditary breast and ovarian cancer, prophylactic mastectomy, oophorectomy, cancer surveillance, psychological distress, body image, sexuality, intimate relationships, breast reconstruction, risk management decisions, disclosure of test results
- MeSH terms
- Adult, Body Image, Breast Neoplasms, Choice Behavior, Female, Follow-Up Studies, Heterozygote, Genetic Carrier Screening, Humans, Mastectomy, Middle Aged, Population Surveillance, Risk Factors, Risk Management, Patient Satisfaction, Genes, BRCA1, Genes, BRCA2, Risk Reduction Behavior
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