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Original Research |

Perceptions, Knowledge, and Satisfaction With Contralateral Prophylactic Mastectomy Among Young Women With Breast Cancer: A Cross-sectional Survey

Shoshana M. Rosenberg, ScD, MPH; Michaela S. Tracy, BA; Meghan E. Meyer, BS; Karen Sepucha, PhD; Shari Gelber, MS, MSW; Judi Hirshfield-Bartek, MS; Susan Troyan, MD; Monica Morrow, MD; Lidia Schapira, MD; Steven E. Come, MD; Eric P. Winer, MD; and Ann H. Partridge, MD, MPH
[+] Article and Author Information

From Harvard School of Public Health, Dana-Farber Cancer Institute, Massachusetts General Hospital, Harvard Medical School, and Beth Israel Deaconess Medical Center, Boston, Massachusetts, and Memorial Sloan-Kettering Cancer Center, New York, New York.

Financial Support: Dr. Partridge and the YWS receive support from Susan G. Komen for the Cure. Dr. Rosenberg receives support from the National Cancer Institute (NIH 5 R25 CA057711).

Potential Conflicts of Interest: Disclosures can be viewed at www.acponline.org/authors/icmje/ConflictOfInterestForms.do?msNum=M13-0924.

Reproducible Research Statement: Study protocol, statistical code, and data set: Available from Dr. Partridge (e-mail, ahpartridge@partners.org).

Requests for Single Reprints: Ann H. Partridge, MD, MPH, Dana-Farber Cancer Institute, D1210, 450 Brookline Avenue, Boston, MA 02115.

Current Author Addresses: Dr. Rosenberg: Dana-Farber Cancer Institute, 450 Brookline Avenue, LW 601, Boston, MA 02215.

Ms. Tracy, Ms. Meyer, and Ms. Hirshfield-Bartek: Dana-Farber Cancer Institute, 450 Brookline Avenue, L243, Boston, MA 02215.

Dr. Sepucha: Massachusetts General Hospital, 50 Staniford Street, S50-9, Boston, MA 02114.

Ms. Gelber: Department of Biostatistics and Computational Biology, Dana-Farber Cancer Institute, Mailstop CLS-11007, 450 Brookline Avenue, Boston, MA 02215.

Dr. Troyan: Brigham and Women's Hospital, Department of Breast Surgical Oncology, 75 Francis Street, Boston, MA 02115.

Dr. Morrow: Memorial Sloan-Kettering Cancer Center, Department of Surgery, 1275 York Avenue, New York, NY 10065.

Dr. Schapira: Massachusetts General Hospital, 55 Fruit Street, Boston, MA 02114.

Dr. Come: Beth Israel Deaconess Medical Center, 330 Brookline Avenue, Room CC-913, Boston, MA 02215.

Drs. Winer and Partridge: Dana-Farber Cancer Institute, 450 Brookline Avenue, Y12, Boston, MA 02215.

Author Contributions: Conception and design: M.S. Tracy, K. Sepucha, S. Gelber, M. Morrow, S.E. Come, A.H. Partridge.

Analysis and interpretation of the data: S.M. Rosenberg, M.S. Tracy, K. Sepucha, S. Troyan, L. Schapira, S.E. Come, A.H. Partridge.

Drafting of the article: S.M. Rosenberg, K. Sepucha, J. Hirshfield-Bartek, L. Schapira, A.H. Partridge.

Critical revision of the article for important intellectual content: S.M. Rosenberg, M.S. Tracy, K. Sepucha, S. Troyan, M. Morrow, L. Schapira, S.E. Come, A.H. Partridge.

Final approval of the article: S.M. Rosenberg, M.S. Tracy, K. Sepucha, S. Gelber, J. Hirshfield-Bartek, S. Troyan, M. Morrow, S.E. Come, E.P. Winer, A.H. Partridge.

Provision of study materials or patients: M.E. Meyer, K. Sepucha, S. Troyan, L. Schapira, A.H. Partridge.

Statistical expertise: S.M. Rosenberg, S. Gelber.

Obtaining of funding: A.H. Partridge.

Administrative, technical, or logistic support: M.S. Tracy, M.E. Meyer, K. Sepucha, A.H. Partridge.

Collection and assembly of data: S.M. Rosenberg, M.S. Tracy, M.E. Meyer, K. Sepucha, A.H. Partridge.


Ann Intern Med. 2013;159(6):373-381. doi:10.7326/0003-4819-159-6-201309170-00003
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Chinese translation

Background: Rates of contralateral prophylactic mastectomy (CPM) have increased dramatically, particularly among younger women with breast cancer, but little is known about how women approach the decision to have CPM.

Objective: To examine preferences, knowledge, decision making, and experiences of young women with breast cancer who choose CPM.

Design: Cross-sectional survey.

Setting: 8 academic and community medical centers that enrolled 550 women diagnosed with breast cancer at age 40 years or younger between November 2006 and November 2010.

Patients: 123 women without known bilateral breast cancer who reported having bilateral mastectomy.

Measurements: A 1-time, 23-item survey that included items related to decision making, knowledge, risk perception, and breast cancer worry.

Results: Most women indicated that desires to decrease their risk for contralateral breast cancer (98%) and improve survival (94%) were extremely or very important factors in their decision to have CPM. However, only 18% indicated that women with breast cancer who undergo CPM live longer than those who do not. BRCA1 or BRCA2 mutation carriers more accurately perceived their risk for contralateral breast cancer, whereas women without a known mutation substantially overestimated this risk.

Limitations: The survey, which was administered a median of 2 years after surgery, was not validated, and some questions might have been misinterpreted by respondents or subject to recall bias. Generalizability of the findings might be limited.

Conclusion: Despite knowing that CPM does not clearly improve survival, women who have the procedure do so, in part, to extend their lives. Many women overestimate their actual risk for cancer in the unaffected breast. Interventions aimed at improving risk communication in an effort to promote evidence-based decision making are warranted.

Primary Funding Source: Susan G. Komen for the Cure.

Figures

Grahic Jump Location
Figure.

Study flow diagram.

CPM = contralateral prophylactic mastectomy; YWS = Helping Ourselves, Helping Others: Young Women's Breast Cancer Study.

Grahic Jump Location

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Mental status of young women with breast cancer who choose contralateral prophylactic mastectomy
Posted on December 10, 2013
Minoru Murakami, MD, Sayaka Shimizu, MD, Shingo Fukuma, MD, PhD
Kyoto University Graduate School of Medicine and Public Health
Conflict of Interest: None Declared
TO THE EDITOR: While we commend Rosenberg et al. (1) for their attempts to evaluate treatment preferences, understanding of treatment options, decision-making capabilities, and overall experiences of young women with breast cancer who chose contralateral prophylactic mastectomy (CPM), assessing these women’s mental status at the time may be equally important to understanding how women approach the decision to undergo CPM.
As the authors mention, almost all women ranked desire to improve survival or extend their lifespan and to prevent metastatic disease as extremely or very important reasons for choosing CPM. However, most subjects were college-educated and therefore understood that bilateral mastectomy would not improve overall survival. Although the authors mentioned this as an issue of cognitive dissonance, we believe this manner of thinking is reasonable in terms of the patients’ impaired mental status. Burgess et al. (2) reported that nearly 50% of women in early stages of breast cancer experienced depression, anxiety, or both in the year after diagnosis, 25% in the second, third, and fourth years, and 15% in the fifth year. Longer-term depression and anxiety were associated with younger age. The National Comprehensive Cancer Network (3) recommends routine screening of all cancer patients for psychological distress. While these patients may recognize the fact that CPM does not improve overall survival as a whole, their impaired mental status may hamper understanding that this fact applies to themselves. These patients would necessarily negatively recognize that contralateral breast cancer (CBC) might worsen their own prognosis and would overestimate the benefit of CPM, which markedly reduces the incidence of CBC. In conclusion, we propose that the next questionnaire survey include items regarding mental status to ensure accurate interpretation of survey results among young women with breast cancer.

Minoru Murakami, MD
Sayaka Shimizu, MD
Shingo Fukuma, MD, PhD
Kyoto University Graduate School of Medicine and Public Health
Kyoto, Japan

Potential Conflicts of Interest: None to disclose

References
1. Rosenberg SM, Tracy MS, Meyer ME, Sepucha K, Gelber S, Hirshfield-Bartek J, et al. Perceptions, knowledge, and satisfaction with contralateral prophylactic mastectomy among young women with breast cancer. A cross-sectional survey. Ann Intern Med. 2013;159:373-81. [PMID: 24042365]
2. Burgess C, Cornelius V, Love S, Graham J, Richards M, Ramirez A. Depression and anxiety in women with early breast cancer: five year observational cohort study. BMJ. 2005;330:702. [PMID: 15695497]
3. National Comprehensive Cancer Network. Distress management. Clinical practice guidelines. J Natl Compr Canc Netw. 2003;1:344-74. [PMID: 19761069]
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Summary for Patients

Do Women With Breast Cancer Overestimate Their Risk for Cancer in the Unaffected Breast?

The full report is titled “Perceptions, Knowledge, and Satisfaction With Contralateral Prophylactic Mastectomy Among Young Women With Breast Cancer. A Cross-sectional Survey.” It is in the 17 September 2013 issue of Annals of Internal Medicine (volume 159, pages 373-381). The authors are S.M. Rosenberg, M.S. Tracy, M.E. Meyer, K. Sepucha, S. Gelber, J. Hirshfield-Bartek, S. Troyan, M. Morrow, L. Schapira, S.E. Come, E.P. Winer, and A.H. Partridge.

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