The DOI matches its Crossref record; 33 of the 33 references it cites were found in a registry or an index.
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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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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