What Women Wish They Knew Before Prophylactic Mastectomy

Sharon J. Rolnick, PhD, MPH; Andrea Altschuler, PhD; Larissa Nekhlyudov, MD; Joann G. Elmore, MD; Sarah M. Greene, MPH; Emily L. Harris, PhD; Lisa J. Herrinton, PhD; Mary B. Barton, MD; Ann M. Geiger, PhD; * Suzanne W. Fletcher, MD

Disclosures

Cancer Nurs. 2007;30(4):285-291. 

In This Article

Discussion and Conclusion

We found that 36% of the comments to open-ended questions related to information needs prior to prophylactic mastectomy and nearly two-thirds of the women commenting expressed a desire to have had more information on a variety of topics, most notably, reconstruction and prostheses. The other third were satisfied with the information received. Women with bilateral prophylactic mastectomy reported more informational needs than those with contralateral prophylactic mastectomy and were significantly more interested in getting increased information about reconstruction and implants. This is possibly due to the fact that these women underwent contralateral prophylactic mastectomy as part of their breast cancer treatment, and thus, had been given a great deal of information prior to their procedure. Also, those women who had faced cancer may be more focused on issues of survival than of appearance. Despite the expressed need for more information, a large majority of both groups of women were satisfied with their decision to obtain the procedure. These results complement previously reported findings on satisfaction with the decision made to undergo prophylactic mastectomy (87% of women with contralateral prophylactic mastectomy and 84% of women with bilateral prophylactic mastectomy) and subsequent quality of life.[25,26]

Like others, we found that women with both contralateral and bilateral prophylactic mastectomy wished to have a realistic expectation of physical results of prophylactic mastectomy and of reconstruction.[20,22,24] This was true throughout the time span covered regardless of approach to reconstruction. Some women also made comments about the need for comprehensive counseling to increase awareness of negative emotions, real and potential, surrounding the procedure. Josephson et al[29] reported a need for increased psychosocial support for women obtaining bilateral prophylactic mastectomy and concluded that a multidisciplinary team including a psychologist was optimal. Few women in our study expressed this need but felt that information sessions for friends and family members could be beneficial to address both factual and support issues.

The study had limitations. Women were surveyed 3 to 22 years after the prophylactic mastectomy, with a median of 9 years. Had we asked for information needs closer to the time of surgery, the responses may have been different. On the other hand, the time gap may have allowed the women to report on enduring issues following prophylactic mastectomy. Women in our study received either total or subcutaneous prophylactic mastectomies, the approach to which has not changed appreciably over time (T. Morris, personal communication, September 20, 2006). Implant material has varied over time, by local practice patterns and due to legislation of acceptable products, however, recovery time, follow-up, and overall patient concerns have been fairly consistent. Another potential limitation is that all women in this study were members of integrated healthcare delivery systems and may not be fully representative of all women selecting prophylactic mastectomy. However, these systems are large, geographically diverse, and community based.

There were also several strengths to our study. First, the number of women surveyed was large and, as mentioned, community based. We were also able to collect information from women with both contralateral and bilateral prophylactic mastectomy, something that has not been done in other studies. In addition, with over 80% of respondents offering comments to one or both open-ended questions, it is clear they have suggestions for improving the care provided as women consider and undergo this surgery. This high level of response provided a rich source of data.

The decision to obtain a prophylactic mastectomy is a major and irreversible one. Women, even aware of the decreased cancer risk conferred by the procedure, must consider the associated physical and emotional ramifications that they may face following the surgery. In addition to photographs of women after prophylactic mastectomy and reconstruction, findings from our study suggest that women would benefit from a full understanding of all options available to them and be better prepared about the potential for pain, numbness, scarring, and the physical changes that may occur as the result of the surgery selected.

In Table 4 , we have summarized the content of all comments to provide an overview of information that could be covered as providers prepare women for this surgery. Clinicians and health educators should be aware of informational needs and find ways through printed materials, one-on-one meetings, or group support sessions, to advise women accordingly.

The print version of this article was originally certified for CE (continuing education) credit. For accreditation details, please contact the publisher, Lippincott Williams & Wilkins, 530 Walnut Street, Philadelphia, PA 19106

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