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)

Lodder, Litanja N; Frets, Petra G; Trijsburg, R Willem; Meijers-Heijboer, E Johanna; Klijn, Jan GM; Seynaeve, Caroline; van Geel, Albertus N; Tilanus, Madeleine MA; Bartels, Carina CM; Verhoog, Leon C; Brekelmans, Cecile TM; Burger, Curt W; Niermeijer, Martinus F

doi:10.1023/a:1015269620265

Cited by 175BRCA gene mutations in cancerWomen's cancer prevention and managementFamily Support in Illness

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)

Lodder, Litanja N, Frets, Petra G, Trijsburg, R Willem, Meijers-Heijboer, E Johanna, Klijn, Jan GM, Seynaeve, Caroline, van Geel, Albertus N, Tilanus, Madeleine MA +5 more·2002·Breast Cancer Research and Treatment

DOI 10.1023/a:1015269620265

Open this paper in CoChat — free account

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.

Integrity signals

Registry

Crossref · 10.1023/a:1015269620265

Cites

34 of 34 references verified0 citation errors · 0 not checkable

Statistics

Recomputing p-values needs the paper’s full text.

Claims the paper makes

This paper’s full text isn’t openly available, so its claims and self-check weren’t run. The registry and citation checks still apply.

Claims other papers make about this one

Each is checked against this paper’s own text: does it say what the citing paper says it does?

The majority of women following prophylactic mastectomy reported decreased hereditary cancer-related distress, while other psychosocial functioning does not appear to be significantly negatively affected.
“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]

The Hospital Anxiety and Depression Scale
Zigmond, A. S., & Snaith, R. P. (1983) · Acta Psychiatrica Scandinavica · doi:10.1111/j.1600-0447.1983.tb09716.x · Cited by 47,139 · see citing works
A Theory of Cognitive Dissonance
Festinger, L. (1957) · doi:10.1515/9781503620766 · Cited by 24,241 · see citing works
A Theory of Cognitive Dissonance
Morvan, C., & O’Connor, A. (2017) · Macat Library eBooks · doi:10.4324/9781912282432 · Cited by 18,284 · see citing works
Statistical Analysis With Missing Data
Lahiff, M., Little, R. J. A., & Rubin, D. B. (1989) · Journal of the American Statistical Association · doi:10.2307/2289883 · Cited by 17,384 · see citing works
Impact of Event Scale: A Measure of Subjective Stress
Horowitz, M., Wilner, N., & Alvarez, W. (1979) · Psychosomatic Medicine · doi:10.1097/00006842-197905000-00004 · Cited by 7,813 · see citing works
Optimism, coping, and health: Assessment and implications of generalized outcome expectancies.
Scheier, M. F., & Carver, C. S. (1985) · Health Psychology · doi:10.1037/0278-6133.4.3.219 · Cited by 6,690 · cited 2× · see citing works
“A Dutch adaptation [13] of the Life Orientation Test [14] is used as a measure of dispositional optimism, assessing a generally positive attitude towards life (8 items, e.g., ‘In uncertain times I usually expect the best’).”
Method
A Strong Candidate for the Breast and Ovarian Cancer Susceptibility Gene BRCA1
Miki, Y., Swensen, J. J., Shattuck-Eidens, D. M., Futreal, P. A., Harshman, K., Tavtigian, S. V., Liu, Q., Cochran, C., Bennett, L. M., Ding, W., et al. (1994) · Science · doi:10.1126/science.7545954 · Cited by 6,069 · see citing works
Statistical Analysis With Missing Data
Ghosh, S., Little, R. J. A., & Rubin, D. B. (1988) · Technometrics · doi:10.2307/1269814 · Cited by 4,730 · see citing works
Identification of the breast cancer susceptibility gene BRCA2
Wooster, R., Bignell, G. R., Lancaster, J., Swift, S., Seal, S., Mangion, J., Collins, N., Gregory, S. G., Gumbs, C. E., Micklem, G., et al. (1995) · Nature · doi:10.1038/378789a0 · Cited by 3,645 · see citing works
The SCL-90 and the MMPI: A Step in the Validation of a New Self-Report Scale
Derogatis, L. R., Rickels, K., & Rock, A. F. (1976) · British Journal of Psychiatry · doi:10.1192/bjp.128.3.280 · Cited by 2,298 · see citing works
A validation study of the Hospital Anxiety and Depression Scale (HADS) in different groups of Dutch subjects
SPINHOVEN, P., ORMEL, J., SLOEKERS, P. P. A., KEMPEN, G. I. J. M., SPECKENS, A. E. M., & HEMERT, A. M. V. (1997) · Psychological Medicine · doi:10.1017/s0033291796004382 · Cited by 2,158 · see citing works
Some Conceptual and Statistical Issues in Analysis of Longitudinal Psychiatric Data
Gibbons, R. D. (1993) · Archives of General Psychiatry · doi:10.1001/archpsyc.1993.01820210073009 · Cited by 719 · see citing works
Psychological responses to BRCA1 mutation testing: Preliminary findings.
Croyle, R. T., Smith, K. R., Botkin, J. R., Baty, B. J., & al, E. (1997) · Health Psychology · doi:10.1037//0278-6133.16.1.63 · Cited by 331 · see citing works
Presymptomatic DNA testing and prophylactic surgery in families with a BRCA1 or BRCA2 mutation.
Meijers-Heijboer, E. J., Verhoog, L., Brekelmans, C., Seynaeve, C., Tilanus-Linthorst, M., Wagner, A., Dukel, L., Devilee, P., van den Ouweland, A. V. D., van Geel, A. V., et al. (2000) · The Lancet · doi:10.1016/s0140-6736(00)02347-3 · Cited by 328 · see citing works
Self-citation
Psychological responses to BRCA1 mutation testing: Preliminary findings.
Croyle, R. T., Smith, K. R., Botkin, J. R., et al. (1997) · Health Psychology · doi:10.1037/0278-6133.16.1.63 · Cited by 269 · see citing works
What you don't know can hurt you: adverse psychologic effects in members of BRCA1-linked and BRCA2-linked families who decline genetic testing.
Lerman, C. E., Hughes, C., Lemon, S. J., Main, D., Snyder, C., Durham, C. G., Narod, S., & Lynch, H. T. (1998) · Journal of Clinical Oncology · doi:10.1200/jco.1998.16.5.1650 · Cited by 251 · see citing works
Predictors of and Satisfaction with Bilateral Prophylactic Mastectomy
Stefanek, M. E., Helzlsouer, K. J., Wilcox, P. M., & Houn, F. (1995) · Preventive Medicine · doi:10.1006/pmed.1995.1066 · Cited by 177 · cited 3× · see citing works
“The three women opting against breast reconstruction did not regret their decision [5].”
BackgroundResult
Three-year follow-up after presymptomatic testing for Huntington's disease in tested individuals and partners.
Tibben, A., Timman, R., Bannink, E. C., & Duivenvoorden, H. J. (1997) · Health Psychology · doi:10.1037//0278-6133.16.1.20 · Cited by 151 · see citing works
Intention to undergo prophylactic bilateral mastectomy in women at increased risk of developing hereditary breast cancer.
Meiser, B., Butow, P., Friedlander, M., Schnieden, V., Gattas, M., Kirk, J., Suthers, G., Haan, E., & Tucker, K. (2000) · Journal of Clinical Oncology · doi:10.1200/jco.2000.18.11.2250 · Cited by 132 · see citing works
Three-year follow-up after presymptomatic testing for Huntington's disease in tested individuals and partners.
Tibben, A., Timman, R., Bannink, E. C., et al. (1997) · Health Psychology · doi:10.1037/0278-6133.16.1.20 · Cited by 118 · see citing works
The assessment of body image in cancer patients
Hopwood, P. (1993) · European Journal of Cancer · doi:10.1016/0959-8049(93)90193-j · Cited by 115 · see citing works
Women’s Regrets After Bilateral Prophylactic Mastectomy
Payne, D., Biggs, C., Tran, K. N., Borgen, P., & Massie, M. (2000) · Annals of Surgical Oncology · doi:10.1007/s10434-000-0150-6 · Cited by 109 · see citing works
Evaluation of breast conserving therapy: clinical, methodological and psychosocial perspectives.
Aaronson, N. K., Bartelink, H., van Dongen, J. A., & van Dam, F. S. A. M. (1988) · PubMed · Cited by 105 · see citing works
ANXIETY AND DEPRESSION IN PATIENTS WITH CHEST PAIN REFERRED FOR EXERCISE TESTING
Channer, K. S., James, M. A., PAPOUCHADO, M., & Rees, J. R. (1985) · The Lancet · doi:10.1016/s0140-6736(85)90805-0 · Cited by 100 · see citing works
Patient regrets after bilateral prophylactic mastectomy
Borgen, P., Hill, A., Tran, K. N., Zee, K. V., Massie, M., Payne, D., & Biggs, C. (1998) · Annals of Surgical Oncology · doi:10.1007/bf02303829 · Cited by 93 · see citing works
Personality Factors and Breast Cancer Development: a Prospective Longitudinal Study
Bleiker, E. M. A., van der Ploeg, H. M., Hendriks, J. H. C. L., & Adèr, H. J. (1996) · JNCI Journal of the National Cancer Institute · doi:10.1093/jnci/88.20.1478 · Cited by 88 · see citing works
Attitude towards prophylactic surgery and effects of genetic counselling in families with BRCA mutations
Wagner, T. M., Möslinger, R., Langbauer, G., Ahner, R., Fleischmann, E., Auterith, A., Friedmann, A., Helbich, T. H., Zielinski, C. C., Pittermann, E., et al. (2000) · British Journal of Cancer · doi:10.1054/bjoc.1999.1086 · Cited by 85 · see citing works
Motivations, satisfaction, and information of immediate breast reconstruction following mastectomy
Contant, C. M. E., van Wersch, A. M. E. A., Wiggers, T., Wai, R. T. J., & van Geel, A. N. (2000) · Patient Education and Counseling · doi:10.1016/s0738-3991(99)00078-6 · Cited by 84 · see citing works
Psychological distress in applicants for predictive DNA testing for autosomal dominant, heritable, late onset disorders. The Rotterdam/Leiden Genetics Workgroup.
DudokdeWit, A. C., Tibben, A., Duivenvoorden, H. J., Frets, P., Zoeteweij, M., Losekoot, M., van Haeringen, A., Niermeijer, M., & Passchier, J. (1997) · Journal of Medical Genetics · doi:10.1136/jmg.34.5.382 · Cited by 80 · see citing works
Self-citation
Presymptomatic testing for BRCA1 and BRCA2: how distressing are the pre-test weeks? Rotterdam/Leiden Genetics Working Group.
Lodder, L. N., Frets, P. G., Trijsburg, R. W., Meijers-Heijboer, E. J., Klijn, J. G. M., Duivenvoorden, H. J., Tibben, A., Wagner, A., van der Meer, C. A., Devilee, P., et al. (1999) · PubMed Central · Cited by 71 · see citing works
Self-citation
The assessment of sexual function in cancer patients
Cull, A. (1992) · European Journal of Cancer · doi:10.1016/0959-8049(92)90068-d · Cited by 38 · see citing works
Facilitating the Shift to Population-based Public Health Programs: Innovation Through the Use of Framework and Logic Model Tools
Moyer, A., Verhovsek, H., & Wilson, V. L. (1997) · Canadian Journal of Public Health · doi:10.1007/bf03403869 · Cited by 29 · see citing works
Craniotubular dysplasia with severe postnatal growth retardation, mental retardation, ectodermal dysplasia, and loose skin: Lenz-Majewski-Like syndrome
Nishimura, G., Harigaya, A., Kuwashima, M., & Kuwashima, S. (1997) · American Journal of Medical Genetics · doi:10.1002/(sici)1096-8628(19970711)71:1
Self-citation
Untitled work
(2000) · doi:10.1002/1096-8628(20010101)98:1
Self-citation

Flagged first, then by citations

Sorted by citations

Prophylactic mastectomy for the prevention of breast cancer
Lostumbo, L., Carbine, N. E., & Wallace, J. (2010) · Cochrane Database of Systematic Reviews · doi:10.1002/14651858.cd002748.pub3 · Cited by 402 · see citing works
International variation in rates of uptake of preventive options in BRCA1 and BRCA2 mutation carriers
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 · see citing works
Self-citation
A 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 · see citing works
Psychological impact of genetic testing for cancer susceptibility: an update of the literature
Meiser, B. (2005) · Psycho-Oncology · doi:10.1002/pon.933 · Cited by 293 · see citing works
Long-Term Psychological Impact of Carrying a BRCA1/2 Mutation and Prophylactic Surgery: A 5-Year Follow-Up Study
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 · see citing works
Self-citation
Risk-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 · see citing works
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 · see citing works
“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…”
Background
Uptake of Risk-Reducing Surgery in Unaffected Women at High Risk of Breast and Ovarian Cancer Is Risk, Age, and Time Dependent
Evans, 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 · see citing works
“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).”
Background
Follow-up of carriers of BRCA1 and BRCA2 variants of unknown significance: Variant reclassification and surgical decisions
Murray, M. L., Cerrato, F. E., Bennett, R. L., & Jarvik, G. P. (2011) · Genetics in Medicine · doi:10.1097/gim.0b013e318226fc15 · Cited by 140 · see citing works
Long-Term Psychosocial Functioning in Women with Bilateral Prophylactic Mastectomy: Does Preservation of the Nipple-Areolar Complex Make a Difference?
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 · see citing works
Bilateral Prophylactic Oophorectomy and Ovarian Cancer Screening Following BRCA1/BRCA2 Mutation Testing
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 · see citing works
Risk‐reducing mastectomy and salpingo‐oophorectomy in unaffected BRCA mutation carriers: uptake and timing*
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 · see citing works
Body image issues after bilateral prophylactic mastectomy with breast reconstruction in healthy women at risk for hereditary breast cancer
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 · see citing works
“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-citation
Satisfaction 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 · see citing works
“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-citation
Utilization of Screening and Preventive Surgery Among Unaffected Carriers of aBRCA1orBRCA2Gene Mutation
Wainberg, S., & Husted, J. (2004) · Cancer Epidemiology Biomarkers & Prevention · doi:10.1158/1055-9965.1989.13.12 · Cited by 116 · see citing works
“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).”
Influential
Genetic 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 · see citing works
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 · see citing works
“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. ,…”
Influential
Uptake and timing of bilateral prophylactic salpingo-oophorectomy among BRCA1 and BRCA2 mutation carriers
Bradbury, 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 · see citing works
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 · see citing works
“2002), it appears that they experiencemore distress following disclosure of a BRCAmutation (Lodder et al. 2002; Watson et al. 2004).”
BackgroundInfluential
Predictive 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 · see citing works
Long-term follow-up of Jewish women with a BRCA1 and BRCA2 mutation who underwent population genetic screening
Metcalfe, K. A., Mian, N., Enmore, M., Poll, A., Llacuachaqui, M., Nanda, S., Sun, P., Hughes, K. S., & Narod, S. A. (2012) · Breast Cancer Research and Treatment · doi:10.1007/s10549-011-1941-0 · Cited by 83 · see citing works
“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].”
Background
Patient responses to the disclosure of BRCA mutation tests in hereditary breast-ovarian cancer families
Lynch, 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 83 · see citing works
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
Women's Decision Making about Risk‐Reducing Strategies in the Context of Hereditary Breast and Ovarian Cancer: A Systematic Review
Howard, A. F., Balneaves, L. G., & Bottorff, J. L. (2009) · Journal of Genetic Counseling · doi:10.1007/s10897-009-9245-9 · Cited by 82 · see citing works
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
“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].”
Background
The 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 · see citing works
“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].”
Background
A randomized controlled trial of a decision aid for women considering genetic testing for breast and ovarian cancer risk
Wakefield, 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 · see citing works
“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].”
Background
Predictors of Prophylactic Bilateral Salpingo-Oophorectomy Compared With Gynecologic Screening Use in BRCA1/2 Mutation Carriers
Madalinska, 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 · see citing works
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 · see citing works
“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-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
“These findings are largely in line with other reports (Lodder et al., 2002; Schwartz et al., 2002).”
BackgroundResultInfluential
Development and testing of a decision aid for breast cancer prevention for women with a BRCA1 or BRCA2 mutation
Metcalfe, 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 · see citing works
“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).”
Background
Bilateral breast cancers
Narod, S. A. (2014) · Nature Reviews Clinical Oncology · doi:10.1038/nrclinonc.2014.3 · Cited by 72 · see citing works
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 · see citing works
“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].”
Background
Impact of delayed implant and DIEP flap breast reconstruction on body image and sexual satisfaction: a prospective follow-up study
Gopie, 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 · see citing works
“[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 · see citing works
Transforming From Cocoon to Butterfly: The Potential Role of the Body in the Process of Posttraumatic Growth
Hefferon, K., Grealy, M., & Mutrie, N. (2009) · Journal of Humanistic Psychology · doi:10.1177/0022167809341996 · Cited by 68 · see citing works
“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).”
Background
Psychological 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 68 · see citing works
“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-citation
Risk‐reducing surgery, screening and chemoprevention practices of BRCA1 and BRCA2 mutation carriers: a prospective cohort study
Phillips, 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 · see citing works
“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).”
Result
Decision Making Regarding Prophylactic Mastectomy: Stability of Preferences and the Impact of Anticipated Feelings of Regret
van 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 · see citing works
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
“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.”
Background
A 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 66 · see citing works
“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…”
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 studies conducted in Europe, rates of prophylactic mastectomy among BRCA1/2 carriers unaffected with breast cancer are much higher, around 50% [32, 33].”
Preserving the Self: The Process of Decision Making About Hereditary Breast Cancer and Ovarian Cancer Risk Reduction
Howard, A. F., Balneaves, L. G., Bottorff, J. L., & Rodney, P. (2010) · Qualitative Health Research · doi:10.1177/1049732310387798 · Cited by 55 · see citing works
“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).”
Background
Patient satisfaction and cancer‐related distress among unselected Jewish women undergoing genetic testing for BRCA1 and BRCA2
Metcalfe, 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 · see citing works
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
“[5 5 ],”
Background
Time 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 · see citing works
Diagnostic Genetic Testing for Hereditary Breast and Ovarian Cancer in Cancer Patients: Women's Looking Back on the Pre-Test Period and a Psychological Evaluation
Claes, E., Evers‐Kiebooms, G., Boogaerts, A., Decruyenaere, M., Denayer, L., & Legius, E. (2004) · Genetic Testing · doi:10.1089/109065704323015996 · Cited by 48 · see citing works
Risk Reduction Behaviors and Provider Communication Following Genetic Counseling and BRCA1 Mutation Testing in an African American Kindred
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 · see citing works
“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).”
BackgroundResult
Systematic review of acceptability, cardiovascular, neurological, bone health and HRT outcomes following risk reducing surgery in BRCA carriers
Gaba, F., & Manchanda, R. (2020) · Best Practice & Research Clinical Obstetrics & Gynaecology · doi:10.1016/j.bpobgyn.2020.01.006 · Cited by 47 · see citing works
Surveillance Behavior and Prophylactic Surgery After Predictive Testing for Hereditary Breast/Ovarian Cancer
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 · see citing works
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 · 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
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 · see citing works
“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).”
Background
Measurement of psychological factors associated with genetic testing for hereditary breast, ovarian and colon cancers
Vadaparampil, S. T., Ropka, M. E., & Stefanek, M. E. (2005) · Familial Cancer · doi:10.1007/s10689-004-1446-7 · Cited by 45 · see citing works
“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…”
BackgroundInfluential
Risk-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 · see citing works
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 · see citing works
“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;…”
Variation in rates of uptake of preventive options by Canadian women carrying the BRCA1 or BRCA2 genetic mutation.
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 · 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
“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 · see citing works
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
“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).”
Background
Conditions 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 · see citing works
“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 · 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
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 · see citing works
“…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].”
Attitudes towards risk‐reducing early salpingectomy with delayed oophorectomy for ovarian cancer prevention: a cohort study
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 · see citing works
International variation in physicians’ attitudes towards prophylactic mastectomy – Comparison between France, Germany, the Netherlands and the United Kingdom
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 · see citing works
Breast reconstruction in bilateral prophylactic mastectomy patients: Factors that influence decision making
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 · see citing works
Intentions for risk-reducing surgery among high-risk women referred for BRCA1/BRCA2 genetic counseling
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 · see citing works
“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.”
Background
Acceptance 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 · see citing works
“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 · see citing works
“Lodder et al. (2002)”
Survivorship considerations in adults with hereditary breast and ovarian cancer syndrome: state of the science
Crotser, C. B., & Boehmke, M. M. (2009) · Journal of Cancer Survivorship · doi:10.1007/s11764-008-0077-7 · Cited by 28 · see citing works
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 · see citing works
Differences Among a Modern Cohort of BRCA Mutation Carriers Choosing Bilateral Prophylactic Mastectomies Compared to Breast Surveillance
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 · see citing works
Psychosocial correlates of intention to undergo prophylactic oophorectomy among women with a family history of ovarian cancer
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 · see citing works
Standard psychological consultations and follow up for women at increased risk of hereditary breast cancer considering prophylactic mastectomy
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 · see citing works
Self-citation
Risk-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 · see citing works
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 · see citing works
“It has been shown that women who choose prophylactic mastectomy tend to be younger [55, 56] and have children [30, 57].”
Background
Evaluation 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 · see citing works
“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 · see citing works
“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…”
Background
Intensive radiologic surveillance: a focus on the psychological issues.
Warner, E. (2004) · Annals of Oncology · doi:10.1093/annonc/mdh657 · Cited by 27 · see citing works
“The situation is further complicated by the fact that, as previously mentioned [16, 17], mutation carriers who i45”
Background
Interventions to improve psychosocial well-being in female BRCA-mutation carriers following risk-reducing surgery
Jeffers, 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 · see citing works
“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…”
BackgroundMethodInfluential
What Made Her Give Up Her Breasts: a Qualitative Study on Decisional Considerations for Contralateral Prophylactic Mastectomy among Breast Cancer Survivors Undergoing BRCA1/2 Genetic Testing
Kwong, A., & Chu, A. T.-W. (2012) · Asian Pacific Journal of Cancer Prevention · doi:10.7314/apjcp.2012.13.5.2241 · Cited by 24 · see citing works
The impact of risk-reducing gynaecological surgery in premenopausal women at high risk of endometrial and ovarian cancer due to Lynch syndrome
Moldovan, R., Keating, S., & Clancy, T. (2014) · Familial Cancer · doi:10.1007/s10689-014-9761-0 · Cited by 23 · see citing works
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 · see citing works
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 · see citing works
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 · see citing works
“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…”
Background
Newly Diagnosed Breast Cancer Patients Choose Bilateral Mastectomy over Breast-Conserving Surgery When Testing Positive for a BRCA1/2 Mutation
Stolier, A. J., & Corsetti, R. L. (2005) · The American Surgeon · doi:10.1177/000313480507101209 · Cited by 22 · see citing works
A Multi‐Case Report of the Pathways To and Through Genetic Testing and Cancer Risk Management forBRCAMutation‐Positive Women Aged 18–25
Hoskins, L. M., & Werner‐Lin, A. (2012) · Journal of Genetic Counseling · doi:10.1007/s10897-012-9521-y · Cited by 21 · see citing works
“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.”
Background
A 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 · see citing works
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 · see citing works
Breast Cancer Risk and Breast-Cancer-Specific Mortality following Risk-Reducing Salpingo-Oophorectomy in BRCA Carriers: A Systematic Review and Meta-Analysis
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 20 · see citing works
Decision-Making Process of Women Carrying a BRCA1 or BRCA2 Mutation Who Have Chosen Prophylactic Mastectomy
McQuirter, M., Castiglia, L. L., Loiselle, C. G., & Wong, N. (2010) · Oncology nursing forum · doi:10.1188/10.onf.313-320 · Cited by 20 · see citing works
“…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).”
Background
Relationship 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 · see citing works
Factors Impacting on Decision-Making towards Prophylactic Surgeries in BRCA Mutation Carriers and Women with Familial Predisposition
Segerer, R. K., Peschel, C., Kämmerer, U., Häussler, S., Wöckel, A., & Segerer, S. E. (2019) · Breast Care · doi:10.1159/000503370 · Cited by 19 · see citing works
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 · see citing works
“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-citation
Understanding Preoperative Breast Satisfaction among Patients Undergoing Mastectomy and Immediate Reconstruction: BREAST-Q Insights
Shamsunder, 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 · see citing works
Building the Cancer Family: Family Planning in the Context of Inherited Breast and Ovarian Cancer Risk
Werner-Lin, A. (2010) · Journal of the Society for Social Work and Research · doi:10.5243/jsswr.2010.3 · Cited by 21 · see citing works
“…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).”
Background
Breast and ovarian cancer risk management in a French cohort of 158 women carrying a BRCA1 or BRCA2 germline mutation: patient choices and outcome
This, 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 18 · see citing works
“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

Long-Term Psychological Impact of Carrying a BRCA1/2 Mutation and Prophylactic Surgery: A 5-Year Follow-Up Study
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 · see citing works
Self-citation
Predictive 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 · see citing works
Presymptomatic testing for BRCA1 and BRCA2: how distressing are the pre-test weeks? Rotterdam/Leiden Genetics Working Group.
Lodder, L. N., Frets, P. G., Trijsburg, R. W., Meijers-Heijboer, E. J., Klijn, J. G. M., Duivenvoorden, H. J., Tibben, A., Wagner, A., van der Meer, C. A., Devilee, P., et al. (1999) · PubMed Central · Cited by 71 · see citing works
Self-citation
Presymptomatic testing for BRCA1 andBRCA2: how distressing are the pre-test weeks?
Lodder, L., Frets, P., Trijsburg, R. W., Meijers-Heijboer, E. J., Klijn, J., Duivenvoorden, H. J., Tibben, A., Wagner, A., van der Meer, C. A., Devilee, P., et al. (1999) · Journal of Medical Genetics · doi:10.1136/jmg.36.12.906 · Cited by 69 · see citing works
Self-citation
Prophylactic surgery decisions and surveillance practices one year following BRCA1/2 testing.
Lerman, C., Hughes, C., Croyle, R. T., Main, D., Durham, C., Snyder, C. L., Bonney, A., Lynch, J., Narod, S., & Lynch, H. (2000) · Preventive Medicine · doi:10.1006/pmed.2000.0684 · Cited by 262 · see citing works

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
Publisher: Springer Science and Business Media LLC
Published: 2002-05
Volume: 73
Issue: 2
Pages: 97-112
ISSN: 0167-6806 (ISSN-L)
1573-7217
DOI: 10.1023/a:1015269620265
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: www.springernature.com/gp/researchers/text-and-data-mining (tdm)
www.springernature.com/gp/researchers/text-and-data-mining (vor)
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 › Sociology and Political Science › 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

About these checks

Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.

Statistics and arithmetic are recomputed, not judged.

Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.

What counts as a claim ›How we measure confidence ›How we check this ›

Are you an author, or do you see a problem with this page? Request a review

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

Integrity signals

Claims the paper makes

Claims other papers make about this one

Cites

Cited by

Related

Record

About these checks