Women's Constructions of the 'right Time' to Consider Decisions About Risk-reducing Mastectomy and Risk-reducing Oophorectomy

Overview

Journal BMC Womens Health

Publisher Biomed Central

Specialty Gynecology & Obstetrics

Date 2010 Aug 7

PMID 20687957

Citations 18

Authors

A Fuchsia Howard

Joan L Bottorff

Lynda G Balneaves

Charmaine Kim-Sing

Affiliations

Soon will be listed here.

Abstract

Background: Women who are notified they carry a BRCA1/2 mutation are presented with surgical options to reduce their risk of breast and ovarian cancer, including risk-reducing mastectomy (RRM) and risk-reducing oophorectomy (RRO). Growing evidence suggests that a sub-group of women do not make decisions about RRM and RRO immediately following genetic testing, but rather, consider these decisions years later. Women's perspectives on the timing of these decisions are not well understood. Accordingly, the purpose of this research was to describe how women construct the 'right time' to consider decisions about RRM and RRO.

Methods: In-depth interviews were conducted with 22 BRCA1/2 carrier women and analyzed using qualitative, constant comparative methods.

Results: The time that lapsed between receipt of genetic test results and receipt of RRM or RRO ranged from three months to nine years. The findings highlighted the importance of considering decisions about RRM and RRO one at a time. The women constructed the 'right time' to consider these decisions to be when: (1) decisions fit into their lives, (2) they had enough time to think about decisions, (3) they were ready emotionally to deal with the decisions and the consequences, (4) all the issues and conflicts were sorted out, (5) there were better options available, and (6) the health care system was ready for them.

Conclusions: These findings offer novel insights relevant to health care professionals who provide decision support to women considering RRM and RRO.

Citing Articles

Racial differences in prevention decision making among U.S. women at high risk of breast cancer: A qualitative study.

Padamsee T, Muraveva A, Meadows R, Hils M, Yee L, Wills C PLoS One. 2023; 18(3):e0278742.

PMID: 36857397 PMC: 9977014. DOI: 10.1371/journal.pone.0278742.

Coping Self-Efficacy and Its Relationship with Psychological Morbidity after Genetic Test Result Disclosure: Results from Cancer-Unaffected Mutation Carriers.

Isselhard A, Lautz Z, Topper M, Rhiem K, Schmutzler R, Vitinius F Int J Environ Res Public Health. 2023; 20(3).

PMID: 36767056 PMC: 9914784. DOI: 10.3390/ijerph20031684.

Psychological factors and the uptake of preventative measures in BRCA1/2 pathogenic variant carriers: results of a prospective cohort study.

Dick J, Tuchler A, Bredart A, Vitinius F, Wassermann K, Rhiem K Hered Cancer Clin Pract. 2022; 20(1):38.

PMID: 36536421 PMC: 9761978. DOI: 10.1186/s13053-022-00244-y.

Population genomic screening: Ethical considerations to guide age at implementation.

Spencer S, Fullerton S Front Genet. 2022; 13:899648.

PMID: 36267415 PMC: 9577139. DOI: 10.3389/fgene.2022.899648.

Risk-Reducing Bilateral Salpingo-Oophorectomy for Ovarian Cancer: A Review and Clinical Guide for Hereditary Predisposition Genes.

Liu Y, Breen K, Catchings A, Ranganathan M, Latham A, Goldfrank D JCO Oncol Pract. 2021; 18(3):201-209.

PMID: 34582274 PMC: 8932494. DOI: 10.1200/OP.21.00382.

References

Fry A, Busby-Earle C, Rush R, Cull A . Prophylactic oophorectomy versus screening: psychosocial outcomes in women at increased risk of ovarian cancer. Psychooncology. 2001; 10(3):231-41. DOI: 10.1002/pon.512. View

Bradbury A, Ibe C, Dignam J, Cummings S, Verp M, White M . Uptake and timing of bilateral prophylactic salpingo-oophorectomy among BRCA1 and BRCA2 mutation carriers. Genet Med. 2008; 10(3):161-166. PMC: 4199586. DOI: 10.1097/GIM.0b013e318163487d. View

Hamilton R, Williams J, Bowers B, Calzone K . Life trajectories, genetic testing, and risk reduction decisions in 18-39 year old women at risk for hereditary breast and ovarian cancer. J Genet Couns. 2008; 18(2):147-59. PMC: 2834272. DOI: 10.1007/s10897-008-9200-1. View

Smith A, Liegey Dougall A, Posluszny D, Somers T, Rubinstein W, Baum A . Psychological distress and quality of life associated with genetic testing for breast cancer risk. Psychooncology. 2007; 17(8):767-73. DOI: 10.1002/pon.1291. View

Lloyd S, Watson M, Oaker G, Sacks N, Querci della Rovere U, Gui G . Understanding the experience of prophylactic bilateral mastectomy: a qualitative study of ten women. Psychooncology. 2001; 9(6):473-85. DOI: 10.1002/1099-1611(200011/12)9:6<473::aid-pon490>3.0.co;2-t. View

Lodder L, Frets P, Trijsburg R, Meijers-Heijboer E, Klijn J, Seynaeve C . 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). Breast Cancer Res Treat. 2002; 73(2):97-112. DOI: 10.1023/a:1015269620265. View

Evans D, Lalloo F, Ashcroft L, Shenton A, Clancy T, Baildam A . Uptake of risk-reducing surgery in unaffected women at high risk of breast and ovarian cancer is risk, age, and time dependent. Cancer Epidemiol Biomarkers Prev. 2009; 18(8):2318-24. DOI: 10.1158/1055-9965.EPI-09-0171. View

Metcalfe K, Esplen M, Goel V, Narod S . Psychosocial functioning in women who have undergone bilateral prophylactic mastectomy. Psychooncology. 2004; 13(1):14-25. DOI: 10.1002/pon.726. View

Ford D, Easton D, Stratton M, Narod S, Goldgar D, Devilee P . Genetic heterogeneity and penetrance analysis of the BRCA1 and BRCA2 genes in breast cancer families. The Breast Cancer Linkage Consortium. Am J Hum Genet. 1998; 62(3):676-89. PMC: 1376944. DOI: 10.1086/301749. View

10.

Friebel T, Domchek S, Neuhausen S, Wagner T, Evans D, Isaacs C . Bilateral prophylactic oophorectomy and bilateral prophylactic mastectomy in a prospective cohort of unaffected BRCA1 and BRCA2 mutation carriers. Clin Breast Cancer. 2008; 7(11):875-82. DOI: 10.3816/CBC.2007.n.053. View

11.

Tan M, Bleiker E, Menke-Pluymers M, Van Gool A, van Dooren S, Van Geel B . Standard psychological consultations and follow up for women at increased risk of hereditary breast cancer considering prophylactic mastectomy. Hered Cancer Clin Pract. 2009; 7(1):6. PMC: 2667399. DOI: 10.1186/1897-4287-7-6. View

12.

Metcalfe K, Birenbaum-Carmeli D, Lubinski J, Gronwald J, Lynch H, Moller P . International variation in rates of uptake of preventive options in BRCA1 and BRCA2 mutation carriers. Int J Cancer. 2008; 122(9):2017-22. PMC: 2936778. DOI: 10.1002/ijc.23340. View

13.

dAgincourt-Canning L . Genetic testing for hereditary breast and ovarian cancer: responsibility and choice. Qual Health Res. 2005; 16(1):97-118. DOI: 10.1177/1049732305284002. View

14.

Hallowell N, Jacobs I, Richards M, Mackay J, Gore M . Surveillance or surgery? A description of the factors that influence high risk premenopausal women's decisions about prophylactic oophorectomy. J Med Genet. 2001; 38(10):683-91. PMC: 1734749. DOI: 10.1136/jmg.38.10.683. View

15.

Hamilton J, Lobel M, Moyer A . Emotional distress following genetic testing for hereditary breast and ovarian cancer: a meta-analytic review. Health Psychol. 2009; 28(4):510-8. PMC: 2807362. DOI: 10.1037/a0014778. View

16.

Butow P, Lobb E, Meiser B, Barratt A, Tucker K . Psychological outcomes and risk perception after genetic testing and counselling in breast cancer: a systematic review. Med J Aust. 2003; 178(2):77-81. DOI: 10.5694/j.1326-5377.2003.tb05069.x. View

17.

Lim J, Macluran M, Price M, Bennett B, Butow P . Short- and long-term impact of receiving genetic mutation results in women at increased risk for hereditary breast cancer. J Genet Couns. 2004; 13(2):115-33. DOI: 10.1023/b:jogc.0000018822.56297.a6. View

18.

Babb S, Swisher E, Heller H, Whelan A, Mutch D, Herzog T . Qualitative Evaluation of Medical Information Processing Needs of 60 Women Choosing Ovarian Cancer Surveillance or Prophylactic Oophorectomy. J Genet Couns. 2015; 11(2):81-96. DOI: 10.1023/A:1014571420844. View

19.

Hallowell N . A qualitative study of the information needs of high-risk women undergoing prophylactic oophorectomy. Psychooncology. 2001; 9(6):486-95. DOI: 10.1002/1099-1611(200011/12)9:6<486::aid-pon478>3.0.co;2-y. View

20.

McCullum M, Bottorff J, Kelly M, Kieffer S, Balneaves L . Time to decide about risk-reducing mastectomy: a case series of BRCA1/2 gene mutation carriers. BMC Womens Health. 2007; 7:3. PMC: 1829393. DOI: 10.1186/1472-6874-7-3. View