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

Results

Overall, 71% (n = 684) of eligible women responded to the mailed survey. Of those who responded to the survey, 81% (n = 554) responded to one or both of the open-ended questions. Of the total 1,067 comments relating to the prophylactic mastectomy experience, 386 (36%) comments were made by 293 women related to information needs. Women who provided open-ended responses were similar to those who received the survey in terms of demographics, family history of breast cancer, and receipt of reconstruction ( Table 1 ).

Overall, 102 of the 293 women (35%) explicitly stated that they were satisfied with the information they received before the procedure ( Table 2 ). However, nearly two-thirds wished they had more information, with women undergoing bilateral prophylactic mastectomy more likely than women undergoing contralateral prophylactic mastectomy to indicate informational needs (79% vs 58%, P = .004). Most comments on insufficient information related to reconstruction and implants (181 of 262; 69%), specifically issues of the longevity, look and feel of implants, and complications such as pain, scarring, and numbness. For those who had undergone bilateral prophylactic mastectomy, these accounted for 81% of comments about inadequate information, compared with 64% of comments by women with contralateral prophylactic mastectomy (P = .008).

The specific concerns most frequently expressed regarding reconstruction and implants are presented in Table 3 . Representative quotes are included. All topics listed had at least 10 comments and comprised 118 of the 181 comments in this domain. The most common topic mentioned (24 women) was the need for better information about "the high rate of implant failure." Although some of the concerns were about the potential of rupture, "I worry that they will break," most comments referred to actual ruptures or replacements. Women mentioned their experiences with implant ruptures and number of replacements. One woman stated "I was told the implants would last until the end of my life" and was disappointed when this was not the case. Many expressed disappointment and frustration with "leakage" and "breaking." Some women also offered suggestions for improvement. One wrote, "I think they should make implants with no latex." Another suggested implants be designed as a "honeycomb insert," which would be "firmer and less likely to rupture."

There were several comments about pain and discomfort (n = 22), the unnatural or asymmetric result of implants (n = 15), scarring (n = 15), and numbness (n = 10). Some women wished they had more information on reconstruction options (n = 12) and healing time (10), or the specific risks of silicone implants (n = 10).

Some comments also mentioned the look and effects on nipples as a result of implants. Women indicated they were led to believe that nipples would look real, but described their results as "very fake," "not real" and "phony." Some also commented on the loss of sensation. Some wished they would have had more information on the overall dramatic impact their body; "the permanence and appearance of reconstruction is shocking." Many wished to have had an opportunity to view photographs before the procedure to gain a "realistic view about end results." There were comments on when reconstruction could be done. Most were disappointed that they had to wait, expressing the preference to have had all surgery at one time. Other comments related to reconstruction and implants mentioned the pressure of implants, the possible risk of infection, how to treat an infection, the effect breast surgery has on one's balance, the impact that reconstruction has on abdominal muscles, and possible postsurgery exercises, including when it would be safe to start them.

Twenty-two women wished they had known more about the potential for negative emotions following the prophylactic mastectomy. There were no differences by bilateral or contralateral status. Some women mentioned feeling depressed following the procedure, stating they no longer felt "whole" or "feminine" or "sexually attractive." This was true for women both with and without committed relationships. The permanent change in their bodies was difficult and these women felt unprepared. One wrote, "Women having prophylactic mastectomy need to have emotional follow-up counseling and this should not be optional." The importance of counseling also was noted by 4 women who did not experience negative emotions. They indicated that they felt "very well prepared," but mentioned that it would be beneficial for husbands or partners to get information presurgery. One woman wrote, "While I was very well prepared, he was not." Another commented, "husbands should be helped to really understand this as well as their wives." In addition to individual or couple counseling, some women wish they had known about support groups.

Although several women commented on their negative emotions, there were 7 who commented that they wished they had known that prophylactic mastectomy was less traumatic and less painful than anticipated. Women undergoing contralateral mastectomy were more likely to offer comments we classified as miscellaneous (P = .012). These comments, mentioned by 1 or 2 women each, pertained to risk of recurrence, benefits of lumpectomy versus mastectomy, details specific to a woman's individual circumstances, more presurgery information on the prophylactic mastectomy procedure, the need for mammography, resources for purchasing bras, and suggestions for healthy eating and vitamin intake.

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