Frost MH, Schaid DJ, Sellers TA, Slezak JM, Arnold PG, Woods JE, Petty PM, Johnson JL, Sitta DL, McDonnell SK, Rummans TA, Jenkins RB, Sloan JA, Hartmann LC. Long-term Satisfaction and Psychological and Social Function Following Bilateral Prophylactic Mastectomy. JAMA. 2000;284(3):319-324. doi:10.1001/jama.284.3.319
Author Affiliations: Divisions of Medical Oncology (Drs Frost and Hartmann), Research Services (Ms Sitta), Biostatistics (Drs Schaid and Sloan, Mr Slezak, and Ms McDonnell), Plastic and Reconstructive Surgery (Drs Arnold, Woods, and Petty), and Clinical Epidemiology (Dr Sellers and Ms Johnson), Departments of Laboratory Medicine and Pathology (Dr Jenkins) and Psychiatry and Psychology (Dr Rummans), Mayo Clinic and Mayo Foundation, Rochester, Minn.
Context Prophylactic mastectomy is a preventive option for women who wish to
reduce their risk of breast cancer. There has been concern about possible
negative psychological sequelae following this procedure. However, few data
are available regarding long-term satisfaction and psychological and social
function following this procedure.
Objective To evaluate patients' long-term satisfaction and psychological and social
function following prophylactic mastectomy.
Design, Setting, and Participants Descriptive study of all women known to be alive (n = 609) who had a
family history of breast cancer and elected to undergo bilateral prophylactic
mastectomy at a large, tertiary US health care clinic between 1960 and 1993,
94% (n = 572) of whom completed a study questionnaire.
Main Outcome Measures Satisfaction with procedure and effects on psychological and social
function, based on responses to the study-specific questionnaire.
Results Mean time from prophylactic mastectomy to last follow-up was 14.5 years.
Most women (70%) were satisfied with the procedure; 11% were neutral; and
19% were dissatisfied. Among the psychological and social variables, the most
striking finding was that 74% reported a diminished level of emotional concern
about developing breast cancer. The majority of women reported no change/favorable
effects in levels of emotional stability (68%/23%), level of stress (58%/28%),
self-esteem (69%/13%), sexual relationships (73%/4%), and feelings of femininity
(67%/8%). Forty-eight percent reported no change in their level of satisfaction
with body appearance; 16% reported favorable effects. However, 9%, 14%, 18%,
23%, 25%, and 36% reported negative effects in these 6 variables, respectively.
Conclusions This study suggests that positive outcomes following prophylactic mastectomy
include decreased emotional concern about developing breast cancer and generally
favorable psychological and social outcomes. These must be weighed against
the irreversibility of the decision, potential problems with implants and
reconstructive surgery, and occurrence of adverse psychological and social
outcomes in some women.
Bilateral prophylactic mastectomy, the preventive removal of breast
tissue, is an option for women at high risk for breast cancer. Recent data
from the Mayo Clinic showed that the procedure lowers the incidence of breast
cancer by approximately 90% among women with a family history of breast cancer.1 These results underscore the need for data on morbidities
associated with prophylactic mastectomy. Specifically, information regarding
satisfaction and psychological and social function needs to be assessed to
provide women and their physicians the information they need to make appropriate
health care decisions.
Prophylactic mastectomy is preferred by a minority of women at high
risk for breast cancer. Although 57% of women at high risk reported prophylactic
mastectomy as an option to be considered in 1 study,2
generally fewer respondents (16%-20%) rate prophylactic mastectomy as a favorable
option.3,4 Only 9% to 17% of women
who express an interest in prophylactic mastectomy actually proceed with the
To our knowledge, there is no literature on the psychological and social
adjustment of women who have had this procedure and limited data on satisfaction
following it. One study of 14 women reported that they were satisfied with
their decision to have prophylactic mastectomy at 6 to 30 months after surgery.2,6 Borgen et al7
found that 5% of respondents had significant regrets after prophylactic mastectomy.
Important questions remain unanswered. What reasons do women describe
for having had prophylactic mastectomy? How does prophylactic mastectomy affect
long-term psychological and social function? How satisfied are women with
prophylactic mastectomy? What factors are associated with prophylactic mastectomy
satisfaction or dissatisfaction for women at high risk? To address these questions,
we performed a corollary study of psychosocial and social outcomes, and overall
satisfaction, to determine the efficacy of prophylactic mastectomy.1
A total of 639 cancer-free women with a family history of breast cancer
had bilateral prophylactic mastectomy at the Mayo Clinic between 1960 and
1993. These women were categorized into high-risk (n = 214) or moderate-risk
(n = 425) groups based on the extent of their family history. Women in the
high-risk group had a pedigree consistent with a single-gene, autosomal dominant
predisposition to breast cancer. Women who did not meet these criteria were
considered to be at moderate risk. Further details of the identification and
characterization of the study population, as well as inclusion and exclusion
criteria, have been previously reported.1
Initial questionnaires were followed up by additional mailings and telephone
calls if there was no response. Women who indicated they were unwilling to
participate were not contacted further.
Our study-specific questionnaire used single-item ordinal measurement
scales to identify reasons for choosing prophylactic mastectomy (such as family
history of breast cancer, lumpy breasts, psychological or emotional, worrisome
findings on biopsy, physician's advice, other), satisfaction with prophylactic
mastectomy, and choice to have prophylactic mastectomy again. We asked women
to rank their top 3 reasons for choosing prophylactic mastectomy. Additionally,
we used single-item ordinal scales to measure the effects of prophylactic
mastectomy on 7 psychological and social variables including self-esteem,
body appearance, feelings of femininity, sexual relationships, emotional concern
about developing breast cancer, level of stress, emotional stability, as well
as perceived risk of breast cancer before and after prophylactic mastectomy.
The use of individual items to measure specific aspects of patient quality
of life, for which tools are nonexistent and/or nonspecific has been identified
as an acceptable practice.8- 11
Open-ended questions solicited participants' basis for their rating of their
satisfaction with prophylactic mastectomy and reasons why they would or would
not choose to have a prophylactic mastectomy if making that choice again.
Question clarity and inclusiveness as well as face validity were established
by a panel of experts consisting of researchers from the fields of medicine,
psychology, nursing, and biostatistics who had expertise in the areas of prophylactic
mastectomy, questionnaire item development, and/or psychosocial research.
The questionnaire was pilot tested on women who had prophylactic mastectomy.
Results of the pilot indicated that items were clear and inclusive.
We analyzed the data using basic descriptive statistics including frequency
distributions, Spearman correlations, cross-tabulations, and χ2
analyses. Responses to psychological and social function items were collapsed
to identify if the effect represented a favorable effect, no change, or an
adverse effect on function. Repondents also rated satisfaction and choice
to have prophylactic mastectomy on a 5-point scale: very positive, positive,
neither, negative, and very negative. Multiple linear regression was used
to evaluate the independent contributions of variables to women's satisfaction
and their choice to have prophylactic mastectomy again. Independent variables
included the 7 psychological and social variables, reasons for choosing prophylactic
mastectomy, family history status of moderate or high risk, perceived risk
before and after prophylactic mastectomy, marital status, whether reconstructive
surgery was done, immediate vs delayed reconstructive surgery, number of surgical
complications after prophylactic mastectomy, problems with implants, age at
prophylactic mastectomy, length of time since procedure, and number of prior
biopsies. Psychological and social variables were analyzed as interval data
when using multiple regression. Differences in psychological and social function
and satisfaction based on age and length of time since procedure were examined
using correlations and responses by year. For open-ended questions, we coded
the themes and concepts of the responses and computed their frequency. We
recoded 10% of the questionnaires to determine intrarater reliability (r= 0.97).
Of the overall sample of 639 women, 609 were alive at the time of this
study and were mailed questionnaires. Ninety-four percent (n = 572) of the
women participated. Demographic and surgical data are given in Table 1.
Family history of breast cancer was the most common reason cited for
prophylactic mastectomy (Table 2).
Ninety-eight percent of the women gave more than 1 reason for prophylactic
mastectomy; 82% noted more than 2 reasons. The most frequent combination of
reasons included family history of breast cancer, physician advice, and nodular
Women with moderate or high risk for breast cancer gave comparable reasons
for prophylactic mastectomy with 2 exceptions: (1) more women with high risk
than with moderate risk cited family history of breast cancer as a major reason
(93% vs 60%, respectively; P= .001) and (2) more
women with moderate risk than with high risk reported nodular breasts (88%
vs 78%, respectively; P= .002).
Seventy-four percent of women reported a diminished level of emotional
concern about developing breast cancer. The majority of women reported no
change/favorable effects in level of emotional stability (68%/23%), level
of stress (58%/28%), self-esteem (69%/13%), sexual relationships (73%/4%),
and feelings of femininity (67%/8%). Forty-eight percent reported no change
in their level of satisfaction with appearance; 16% reported favorable effects
(Figure 1). Responses to psychological
and social variables were not significantly associated with age at prophylactic
mastectomy, length of follow-up, family history of moderate vs high risk for
breast cancer, or whether mastectomy was simple or subcutaneous. Several of
the psychological and social variables were, as expected, significantly correlated
with each other. The strongest correlations occurred among self-esteem, satisfaction
with body appearance, feelings of femininity, and sexual relationships (r= 0.41-0.62), and emotional concern about developing breast
cancer and level of stress (r= 0.44). Correlations
among the other psychological and social variables ranged from 0.02 to 0.25.
For some women, prophylactic mastectomy was associated with adverse
psychological and social consequences. Thirty-six percent of the women reported
diminished or greatly diminished satisfaction with their body appearance after
prophylactic mastectomy. Some women reported adverse effects in level of emotional
stability (9%), level of stress (14%), self-esteem (18%), sexual relationships
(23%), and feelings of femininity (25%). Three women reported adverse consequences
on every psychological and social variable.
Seventy percent of the women were either satisfied or very satisfied
with their prophylactic mastectomy. In contrast, 19% were dissatisfied or
very dissatisfied (Figure 2). When
asked whether they would choose to have prophylactic mastectomy again, 67%
indicated they definitely or probably would (Figure 3). Eighteen percent indicated that they probably or definitely
would not choose prophylactic mastectomy again. There was a moderately strong
correlation between satisfaction with prophylactic mastectomy and decision
to have the procedure again (r= 0.63; P<.001). Level of satisfaction was not influenced by age, length
of time since procedure, or whether a woman was in the moderate-risk or high-risk
group. In addition, level of satisfaction was not influenced by whether the
woman had a simple or subcutaneous mastectomy after controlling for whether
a woman had reconstruction (Table 3).
In terms of simple correlation, satisfaction with body appearance (r= 0.49; P<.001), self-esteem
(r= 0.38; P<.001), limited
impact on sexual relationships (r= 0.32; P<.001), and lower level of stress in life (r= 0.27; P<.001) were related most strongly
to increased satisfaction with prophylactic mastectomy.
The variables identified by multiple regression to be associated with
satisfaction were increased satisfaction with body appearance, lower level
of stress in life, fewer problems with implants, no reconstructive surgery,
no change or improved sexual relationships, family history of breast cancer
as a reason cited for prophylactic mastectomy, and decreased emotional concern
about developing breast cancer (Table 4). These 7 variables explained 36% of the variability in satisfaction
with prophylactic mastectomy; 34% was explained by the first 4 variables listed.
Collinearity diagnostics revealed that correlation among variables was not
problematic for the regression models.
In addition to evaluating all reasons a woman listed for prophylactic
mastectomy, we also considered only the first reason cited. With this approach,
all variables identified as significant in the multiple regression model remained
so, with 1 exception. Family history of breast cancer was replaced by physician's
advice in the model and was associated with a lower level of satisfaction.
This combination of variables explained 38% of the variability in women's
satisfaction with prophylactic mastectomy, with 36% of the variability explained
by 4 variables: satisfaction with appearance, lower levels of stress after
prophylactic mastectomy, fewer problems with implants, and physician's advice
as the primary reason for prophylactic mastectomy.
In response to an open-ended question asking reasons for their level
of satisfaction, women who were satisfied or very satisfied with prophylactic
mastectomy most frequently cited peace of mind, good health since procedure
or no problems with procedure, satisfaction with body image and sequelae,
and risk reduction or enhanced detection of cancer. Women who were dissatisfied
or very dissatisfied with prophylactic mastectomy most frequently reported
adverse symptoms or complications including implant concerns, adverse body
image and sequelae, and insufficient information or support.
We assessed the level of contentment across the following variables:
satisfaction with prophylactic mastectomy, choice to have prophylactic mastectomy
again, and the 7 psychological and social function measures. No one responded
negatively to all items. One woman responded negatively to all items except
reduced emotional concern about developing breast cancer. Ten percent of the
women reported dissatisfaction or negative consequences for more than half
of the 9 aforementioned variables; 57% were dissatisfied with at least 1 of
the 9 variables.
A decision to proceed with prophylactic mastectomy is a major, irreversible
step. There has been intense speculation about possible psychosocial sequelae
of this procedure. With this study we provide long-term follow-up of a defined
cohort of women with a family history of breast cancer who had bilateral prophylactic
mastectomy. At a mean of 14.5 years after surgery, the majority of women reported
satisfaction, a diminished level of emotional concern about developing breast
cancer, and that they would likely choose the procedure again. Additionally,
the majority of women reported favorable effects or no change in self-esteem,
satisfaction with body appearance, feelings of femininity, sexual relationships,
level of stress in life, and overall emotional stability. However, there were
some women who were negative in their responses. The top 3 reasons cited for
having prophylactic mastectomy were family history, physician's advice, and
The variable most strongly associated with satisfaction after prophylactic
mastectomy was satisfaction with body appearance. Other variables strongly
associated with satisfaction in our study were lower level of stress in life,
fewer problems with implants, and no reconstruction after prophylactic mastectomy.
Physician's advice as the primary reason for choosing prophylactic mastectomy
was associated with dissatisfaction.
Why were women who did not have breast reconstructive surgery more satisfied?
It is possible that these women place less emphasis on their breasts as part
of their self-definition. Related literature supports that women with breast
cancer who choose breast conservation over mastectomy are more concerned with
their body image, self-esteem, and adjustment to the loss of their breast.12,13 In our study, women who chose not
to have reconstructive surgery compared with women who chose to have immediate
reconstructive surgery reported fewer adverse outcomes with feelings of femininity
(17% and 28%, respectively) and body appearance (26% and 37%, respectively).
Moreover, women who did not have reconstruction would not have been exposed
to concerns about implants and other problems with reconstructive surgery.
For some women, prophylactic mastectomy was associated with dissatisfaction
and/or adverse psychological and social consequences. The level of dissatisfaction
in our study is higher than that found by other researchers.6,7
Borgen et al7 reported that only 5% of a group
of 370 women who had prophylactic mastectomy had significant regrets about
the procedure 15 years later. But their sample, consisting of volunteers who
answered an advertisement published in many magazines, may have selected women
with more favorable experiences. Stefanek et al6
reported that all of the 14 women in their study were satisfied with prophylactic
mastectomy 6 to 30 months after the procedure. However, they were less satisfied
with their reconstructive surgery. Because 95% of our cohort had reconstructive
surgery, our patients' responses reflect their experiences with both prophylactic
mastectomy and reconstructive surgery.
Are responses to satisfaction questions colored by women wanting to
provide socially desirable responses? We do not think so. Women in this study
commented freely on areas of dissatisfaction when answering the open-ended
questions. Moreover, 57% of the women reported unfavorable scores on at least
1 of the satisfaction and psychosocial items.
We compared satisfaction and psychological and social function among
women at high risk for breast cancer who, prior to their prophylactic mastectomy,
did and those who did not have a sister diagnosed as having breast cancer.
We found no statistically significant differences between women at high risk
for breast cancer, who prior to their prophylactic mastectomy, did and those
who did not have a sister diagnosed as having breast cancer. However, there
was a trend toward higher satisfaction in women at high risk for breast cancer
who, prior to their prophylactic procedure, had a sister diagnosed as having
breast cancer compared with women who, prior to their prophylactic mastectomy,
did not have a sister diagnosed as having breast cancer (79% and 64%, respectively,
were satisfied; 9% and 23%, respectively, were dissatisfied; P= .07). Seventy-two percent of the women who, prior to their prophylactic
procedure, had a sister diagnosed as having breast cancer would probably or
definitely choose to have prophylactic mastectomy again compared with 67%
of the women who, prior to prophylactic mastectomy, did not have a sister
diagnosed as having breast cancer. Eleven percent and 19%, respectively, would
probably not or definitely not choose the procedure again. There were no significant
differences between groups on the 7 psychological and social variables.
Despite fitting a comprehensive model, factors identified as strongly
associated with satisfaction accounted for only 36% to 38% of the variability
in levels of satisfaction. Clearly, satisfaction is multifaceted and highly
personal. Ideally, we would like to be able to identify those women preoperatively
who are most likely to be satisfied or dissatisfied with prophylactic mastectomy.
When analyzing reasons for choosing prophylactic mastectomy, our retrospective
approach has limitations. The chief concern is that recall of reasons may
be colored by subsequent experiences. For example, we found some association
between dissatisfaction and listing physician's advice as the primary reason
for prophylactic mastectomy. This can be interpreted in at least 2 ways. One,
some physicians pressured women into this decision, contributing to long-term
dissatisfaction. Or, given the retrospective nature of our decision-making
assessment, those women who are now dissatisfied attribute their original
decision to physician advice. Clearly, the role of the health care professional
is to provide data about all options in a balanced manner. The primary motivation
for the procedure must derive from the patient herself.
It has been suggested that the decision to have prophylactic mastectomy
is driven by irrational fear.14,15
Of the 572 study participants, 3% listed psychological or emotional factors
as the primary reason for prophylactic mastectomy; 22% listed it as 1 of their
top 3 reasons. Clearly, concern about breast cancer is what motivates a woman
to pursue any possible prevention or early detection strategy. What level
of concern prompts a woman to pursue a given strategy is an individualized
decision. The majority of women provided more than 2 reasons for prophylactic
mastectomy, suggesting that their decision followed the weighing of multiple
Seven of the entire bilateral mastectomy cohort of 639 women developed
cancer after bilateral prophylactic mastectomy. Six of them were alive at
the time of survey administration. None of the women voiced dissatisfaction
and 5 of the 6 said they would "definitely" or "probably would" choose prophylactic
mastectomy again. One response was neutral for satisfaction. Likewise, 1 response
was neutral for choice to have the procedure again. Comments related to rationale
for satisfaction included that it was the best decision at the time, that
they were comfortable with their body image, it provided peace of mind, and
that it provided risk reduction or enhanced detection of cancer. One woman
was dissatisfied with the cosmetic results and 1 woman reported that the procedure
gave her a false sense of security.
During the study period, subcutaneous mastectomy was performed more
commonly than it is at present. Advances in breast and nipple reconstruction,
as well as the more complete removal of breast tissue with total mastectomy,
make total mastectomy the preferred prophylactic procedure for the majority
of women at high risk of breast cancer.
In conclusion, these data provide additional information to women contemplating
prophylactic mastectomy. While the majority of women are satisfied with prophylactic
mastectomy and would choose it again, there are some women who are neutral
in their response or dissatisfied with this procedure. Our role as health
care professionals is to provide a woman with a family history of breast cancer
the best available information and encourage her to take time to consider
all the options now available. Positive outcomes following prophylactic mastectomy
include a significant reduction in breast cancer risk,1
decreased emotional concern about developing breast cancer, and generally
favorable psychological and social outcomes. These must be weighed against
the irreversibility of the decision, potential problems with implants and
reconstructive surgery, and adverse psychological and social outcomes in some