Long-Term Satisfaction and Psychological and Social Function Following Bilateral Prophylactic Mastectomy
Abstract & Commentary
Source: Frost MH, et al.Long-term satisfaction and psychological and social f unctioning following bilateral prophylactic mastectomy. JAMA 2000;284:319-324.
Between 1960 and 1993, 639 cancer-free women underwent bilateral prophylactic mastectomy at the Mayo Clinic. One-third of these women were at high risk for the development of breast cancer and two-thirds were at moderate risk. A previous publication from the same data source reported that the procedure lowers the incidence of breast cancer in these women by approximately 90%. The purpose of this new paper was to determine the long-term satisfaction and the psychological effect of prophylactic mastectomy. Questionnaires were sent to all 609 women in the group who were alive at the time of the study, an average of 14.5 years after surgery. Ninety-four percent of the cohort participated. Simple demographic and surgical variables were collected. The questionnaire each woman responded to included seven psychological and social variables. These included items such as self-esteem, appearance, femininity, sexual relationships, concerns about breast cancer, stress, and emotional stability. Participants also were asked for the reasons they chose prophylactic mastectomy.
The no 1 reason for a patient choosing prophylactic mastectomy was a family history of breast cancer. Thirty-eight percent of the women in the study recorded this as the major reason, and 68% of the total cohort cited this as one of their top three reasons. Interestingly, 72% of the women cited physician advice as the reason for mastectomy, but only 20% recorded it as their no 1 reason. Prior, "worrisome" biopsy reports were only cited by 9% of the women as the no 1 reason, and only 21% of the cohort mentioned it at all.
Seventy-four percent of the women reported less concern about developing breast cancer following the procedure. Many women also cited other favorable facts. For example, 28% noted a favorable effect on stress, 23% on emotional stability, 13% on sexual relationships, and 8% on feelings of femininity. Interestingly, 16% reported favorable effects on their satisfaction with their appearance and another 48% reported no change in the level of satisfaction with their appearance. However, 36% of the women noted an adverse effect on body image.
Seventy percent of the women either were satisfied or very satisfied with their decision to undergo prophylactic mastectomy, while 19% were either dissatisfied or very dissatisfied. Sixty-seven percent of the cohort indicated that they definitely or probably would have the procedure again.
Frost and colleagues attempted to determine which variables were most strongly associated with satisfaction with prophylactic mastectomy. The strongest association was with an increased satisfaction with appearance, though this was not a majority of the cohort. The most common variable associated with dissatisfaction with the procedure was physician advice.
Frost et al concluded that prophylactic mastectomy in high-risk women may be an appropriate procedure with proper counseling and advice. However, the decision must not be undertaken lightly, as it is permanent. In addition, those physicians offering the procedure must recognize that a small but important minority of women will be dissatisfied with the outcome.
COMMENT BY KENNETH L. NOLLER, MD
I have been looking forward to this follow-up study concerning the satisfaction of patients who underwent bilateral prophylactic mastectomy for cancer concerns, since the publication of the article last year confirming the reduced risk of breast cancer in this group.1 While it is clear that prophylactic mastectomy can greatly reduce the risk of breast cancer in high-risk women, it is important to determine whether women who have undergone the procedure consider that it was "worth it."
This retrospective study reports 24 years of Mayo Clinic experience. It is very clear that most of the women in the cohort were happy with the results, and most would have the procedure again if they had to make a new decision.
There are a few questions that this study left unanswered, though retrospective studies often can only deal with rather general topics. For example, Frost et al found that improvement in bodily appearance was strongly associated with satisfaction with the procedure. It would help those who are counseling women regarding this procedure to know what about bodily appearance/image was improved. For example, were women with nodular breasts the primary group that thought their bodily image was improved? Was it women with small breasts? Was it women with large breasts? It would be nice to be able to better predict that a women would likely be happy with her result.
Another item Frost et al noted—that dissatisfaction was most associated with physician advice to have a mastectomy—deserves further comment. Frost et al correctly note that women who were dissatisfied might selectively recall physician advice rather than personal choice as the reason for the procedure. There is some tendency in retrospective studies for such selective recall to occur. However, physicians need to recognize that, when they counsel women concerning prophylactic mastectomy, it is very possible that their patient may be more likely to be unhappy with the result if they "push too hard." While the physician certainly should announce her/his opinion, appropriate concern about cancer risk should be the most compelling reason for choosing the procedure. (Dr. Noller is Professor and Chairman, Department of OB/GYN University of Massachusetts Medical Center, Worcester, Mass..)
Reference
1. Hartmann LC, et al.Efficacy of bilateral prophylactic mastectomy in women with a family history of breast cancer. N Engl J Med 1999;340:77-84.
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