Download Perceptions. Knowledge, and Satisfaction with

Annals of Internal Medicine
ORIGINAL RESEARCH
Perceptions, Knowledge, and Satisfaction With Contralaterai
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;
Judj 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
Background: Rates of contralaterai prophylactic mastectomy (CPM)
have increased dramatically, particuiariy among younger women
with breast cancer, but iittle is i<nown 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 enroiied
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 biiaterai mastectomy.
Measurements: A 1-time, 23-item survey that included items related to decision making, knowiedge, risk perception, and breast
cancer worry.
were extremely or very important factors in their decision to have
CPM. However, only 18% indicated that women with bre2ist cancer who undergo CPM iive ionger 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 substantiaiiy overestimated this risk.
Limitations: The survey, which was administered a median of 2
years after surgery, was not vaiidated, and some questions might
have been misinterpreted by respondents or subject to recaii bias.
Generaiizabiiityof the findings might be iimited.
Conclusion: Despite knowing that CPM does not deariy improve
survivai, women who have the procedure do so, in part, to extend
their iives. Many women overestimate their actuai 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. Körnen for the Cure.
Results: Most women indicated that desires to decrease their risk
for contraiaterai breast cancer (98%) and improve survivai (94%)
Ann intern Med. 2013;15g:373-381.
For author affiliations, see end of text.
R
0.75% per year among women with early-stage disease (6,
7). Moreover, this risk has decreased over time because of
the widespread use of adjuvant therapy (8). A recent study
of women with a family history of breast cancer who did
not harbor a known genetic predisposition reported that
the 10-year cumulatiye risk for CBC was less than 15% in
women younger than 40 years at diagnosis of the index
cancer (9). Among the youngest women in this study with
a delei:erious BRCAl or BRCA2 mutation, the 10-year cumulative risks ranged from approximately 24% to 31% (9).
Findings are mixed about whether contralateral mastectomy results in improved survival among high-risk women
who have already had breast cancer (10, 11), probably because not only is the absolute benefit from the procedure
ates of contralaterai prophylactic mastectomy (CPM)
have increased dramatically among women treated for
early-stage breast cancer in recent years in the United
States. In the late 1990s, between 4% and 6% of women
who had mastectomies also underwent CPM, whereas in
more recent years the reported range has increased to between 11% and 25%, a 3- to 4-fold change (1-4).
The trend for bilateral mastectomy at diagnosis of unilateral breast cancer is particularly notable among young
women, with younger age consistendy identified as a predictor of CPM (1-5). Although mastectomy is a safe procedure and major complications are rare, there are cosrnetic
concerns as well as clinically significant potential long-term
sequelae, including numbness of the chest skin and chronic
pain, that may affect quality of life (QOL). With many
women opting for reconstructive surgery, the potential for
an extended recovery time, additional surgical complications, and decrease in strength or function due to muscles
being moved or stretched must also be considered.
Most important, the value of the procedure for most
women with unilateral early-stage breast cancer is unclear.
Although CPM markedly reduces the risk for cancer in the
unaffected breast, the risk for contralateral breast cancer
(CBC) in most women (those without a clear cancerpredisposing mutation) is low: approximately 0.5% to
www.annals.org
See also:
Print
Editorial comment. .. .
Summary for Patients.
428
i-30
Web-Only
,Suppiement
© 2013 American' College of Physicians 3 7 3
XVESEARCH
Contralateral Prophylactic Mastectomy Among Young Women With Breast Cancer
Context
Increasing numbers of women with breast cancer have
contralateral prophylactic mastectomy.
Contribution
This study involved 123 women aged 40 years or younger
with cancer in 1 breast who had undergone bilateral mastectomy. Common reasons given for choosing prophylactic
mastectomy were desires to avoid developing contralateral
breast cancer (98%) and to improve survival (94%).
Women often overestimated the risk for contralateral
breast cancer, but only 18% believed that bilateral mastectomy improved survival.
Caution
Women were surveyed 2 years after surgery.
Implication
Although women may know that contralateral prophylactic mastectomy does not improve survival, many choose it
with the hope of extending life.
—The Editors
modest, but young women are, on average, at the greatest
risk for systemic recurrence and death from their initial
breast cancer (12) and thus have a heightened competing
risk. Having CPM is not likely to affect risk for metastatic
disease from a woman's primary breast cancer. Thus, when
CPM is being considered for women with early-stage
breast cancer, there is an inherent tension between the clinician's obligation to practice evidence-based medicine and
"do no harm" by avoiding unnecessary procedures and a
desire to respect patient preference.
Studies examining the decision to have CPM have
been limited, especially among younger women with breast
cancer. There are few available data related to the decisionmaking process, including how well-informed women were
about CPM when they made the decision. In this study,
we sought to describe perceptions, knowledge, and satisfaction with CPM among participants enrolled in a large prospective cohort study of women diagnosed with breast cancer at age 40 years or younger. A better understanding of
how patients approach the decision to have CPM can potentially inform clinicians who are counseling young
women with early-stage disease about their local therapy
and preventive decisions.
METHODS
Design Overview
The YWS (Helping Ourselves, Helping Odiers:
Young Women's Breast Cancer Study) is an ongoing prospective cohort study established to explore biological,
medical, and QOL issues specific to young women diagnosed with breast cancer. After enrollment, women are
3 7 4 | 17 September 20131 Annals of Internal Medicine I Volume 159 • Number 6
mailed surveys twice a year for the first 3 years after diagnosis and annually for an additional 7 years. Beginning in
November 2010, a 1-time supplementary questionnaire
("CPM survey") was mailed to .women who enrolled between November 2006 and November 2010 and reported
bilateral mastectomy on any survey completed within the
first year after diagnosis. This study was approved by the
Institutional Review Board at the Dana-Farber/Harvard
Cancer Center and other participating sites.
Study Participants
As of November 2010, study enrollment sites for the
YWS included 4 academic and 5 community hospitals located in eastern Massachusetts and 1 academic site in Toronto, Ontario, Canada. The CPM substudy was open
only to women enrolled from centers in Massachusetts.
English-speaking women with a diagnosis of breast cancer
at age 40 years or younger are eligible for the YWS. For the
sites in Massachusetts, women are identified within 6
months of diagnosis by using the Rapid Case Identification
Core of the Dana-Farber/Harvard Cancer Center and ate
subsequently invited to enroll in the study.
Of the 550 women enrolled between November 2006
and November 2010, a total of 159 (29%) from 8 of 9
participating centers reported having a bilateral mastectomy between September 2006 and November 2010 (Figure). The response rate was 83%, with 132 women completing the CPM survey. We excluded an additional 9
women from the analytic sample who had bilateral breast
cancer diagnosed before (« = 3) or after surgery (n = 4) or
bilateral prophylactic indications, defined as having bilateral mastectomy without knowledge of cancer in either
breast before surgery, with cancer detected only afiier surgery (w = 2). A total of 123 women were included in this
analysis.
Measurements
Sociodewographic and Disease Characteristics
Participants self-reported age, race, ethnicity, marital
status, education, employment, and insurance status on the
baseline survey, which was completed an average-of approximately 5 months after diagnosis. Cenetic mutation
information {BRCAl or BRCA2, mutation of uncertain
clinical significance, not tested or unknown, or no mutation) and family history of breast and ovarian cancer were
also self-reported on the survey completed by participants
1 year after diagnosis. We categorized women who reported having a BRCAl or BRCA2 mutation or a mutation
of uncertain clinical significance as "mutation carriers" and
all others as "noncarriers." Medical record review was used
to ascertain stage, grade, human epidermal growth factor
receptor-2 status, and hormone receptor status, as well as
to reconcile missing sociodemographic information and
verify self-report of genetic testing results. We did not use
medical record review to ascertain whether diagnostic procedures (for example, magnetic resonance imaging or ultrawww.annals.org
Contralateral Prophylactic Mastectomy Among Young Women With Breast Cancer
sonography) were used before surgery to exclude the possibility of contralateral disease.
CPM Survey
The CPM survey (Supplement, available at www
.annals.org) consisted of 23 items related to decision making, knowledge, risk perceptions, and breast cancer worry.
This 1-time cross-sectional survey was developed specifically for this study and was based on the expert knowledge
of 3 of this article's authors, who have extensive experience
measuring decision making, risk perceptions, and knowledge outcomes in patients with breast cancer.
ORIGINAL RESEARCH
Figure. Study flow diagram.
Invited to enroll in YWS between
November 2006 and October 2010
(n = 931)
•
D i d n o t e n r o l l ( n = 381)
Died before enrollment: 6
Ineligible to participate: 9
Declined to participate: 122
Did not respond to invitation: 218
Enrolled in study after November 2010: 26
Enrolled between
Decision Making
We presented women with a comprehensive list of
potential reasons for having CPM, including cosmetic, preventive, genetic, and cancer-related (for example, fear of
recurrence or history of abnormal mammogram or magnetic resonance imaging result), and asked them to indicate
on a 5-point scale (extremely important, very important,
somewhat important, not at all important, or not sure) the
degree to which these factors played a role in their decision.
We also used this scale to assess the influence of different
sources of information (physicians, nurses, family and
friends, and media) on the decision to have CPM.
The SURE (Sure of myself. Understanding information. Risk-benefit ratio. Encouragement) Scale comprises
4 items from the Decisional Conflict Scale (13) that measure patients' uncertainty about which treatment to choose
and factors contributing to uncertainty (feeling uninformed, unclear values, or lack of support in decision making). The SURE Scale has been shown to have modest
reliability and good construct validity in a sample of
English-speaking patients and a sample of French-speaking
patients facing treatment decisions (14). Scores range from
0 to 4, with lower scores indicating higher decisional
conflict.
We measured respondents' confidence about whether
the choice to have CPM was right for them by using a scale
of 0 (not confident) to 10 (extremely confident). A second
question asked women whether they would choose CPM if
making the decision again (yes, definitely; yes, probably;
no, probably not; no, definitely not; or not sure). We also
asked women to indicate whether their experience with
several surgical and QOL outcomes, including pain, cosmesis, sense of sexuality, and recovery from reconstruction,
was better than expected, worse than expected, or about
what they expected.
One item asked about who first proposed having CPM
(patient, oncologist, surgeon, family, or friend). Additional
items aimed to assess the extent of discussion with a physician about the risk for contralateral cancer, reasons to
have or not to have CPM, and personal feelings about
CPM. We graded responses for these discussions as a lot,
some, a little, or not at all.
www.annals.org
November 2006 and November 2010
(n = 550)
•
Ineligible for CPM substudy as of November
2010 {n = 391)
Enrolled at Toronto study site (not eligible
to receive CPM survey): 12
Enrolled but no surgery data collected: 14
Lost to follow-up or died before
baseline: 28
Did not report bilateral mastectomy: 337
Reported bilateral mastectomy
(n = 159)
». Did not respond to survey (n = 27)
Responded to survey
(n = 132)
Excluded (n = 9)
Bilateral prophylactic indications: 2
Bilateral breast cancer diagnosis before
>
surgery: 3
Unilateral cancer diagnosis before surgery;
cancer found in contralateral breast at
surgery: 4
Total in analytic sample
(n = 123)
CPM = contralateral prophylactic mastectomy; YWS = Helping Ourselves, Helping Others: Young Women's Breast Cancer Study.
Knowledge, Risk Perception, and Breast Cancer Worry
We asked respondents to estimate the number of
women with early-stage breast cancer, out of 100, who
would develop cancer in the contralateral breast after either
a single mastectomy or lumpectomy with radiation and the
number who would develop recurrent breast cancer in the
chest wall of the breast removed prophylactically. Other
items pertaining to breast cancer knowledge were adapted
from the Breast Cancer Surgery Decision Quality Instrument (15) and included an estimate of the number of
women diagnosed with and treated for early-stage breast
17 Sepcember 2013 Annals of Internal Medicine Voluine 159 • Number 6 3 7 5
ORIGINAL RESEARCH
Contralateral Prophylactic Mastectomy Among Young Women With Breast Cancer
Table 1. Patient and Tumor Characteristics
characteristic
Value*
Median age at diagnosis (range), y
37 (26-40) 1
Median time since CPM (range), y
2.1 (0.1^.3)
Race
White
Other
1
Not provided
113(92)
7(6)
3(2)
Married/living as married
Yes
1 No
Not provided
101 (82)
19(15)
3(2)
College education
Yes
No
1
Not provided
104(85)
14(11)
5(4)
1
1
Employed full-time
Yes
1
No .
Not provided
Medically insured
Yes
No
1
Not provided
1
45 (37)
75 (61)
3(2)
118(96)
1 (1)
4(3)
Estrogen receptor status
Positive
1
Negative
74 (60)
49 (40)
HER2 status
Positive/indeterminate
1
Negative
Not provided
42 (34)
75(61)
6(5)
Stage
1 0
i
1 il
iii
1 iV
8(7)
41 (33)
56 (46)
17(14)
1 (1)
Reconstructive surgery
Yes
I
No
116(94)
7(6)
First-degree relative with breast or ovarian cancer.
Yes
1 No
Unsure
32 (26)
87(71)
4(3)
Second-degree relative with breast or ovarian cancer
Yes
No
t
Unsure
76 (62)
38(31)
9(7)
Mutation status
None
[
BRCAl mutation
BRCA2 mutation
I
Mutation of uncertain significance
Not tested/unknown
74 (60)
22 (18)
8(7)
4(3)
15(12)
f
1
1
1
1
1
1
1
1
1
1
Statistical Analysis
Because the aim of this study was to better understand
how women' approached the decision to have CPM, the
analyses we conducted were primarily descriptive. Means,
medians, and frequency distributions were calctilated for
continuous and categorical outcomes. For the measures of
risk perception and knowledge, we stratified results by mutation carrier status. For items with a response rate less
than 100%, the number of respondents who answered the
question is specified. To assess whether results would differ
when high-risk women were excluded, we repeated the
analyses and excluded women who were identified as mutation carriers (w = 34). All analyses were conducted using
SAS, version 9.2 (SAS Institute, Cary, North Carolina).
Role of the Funding Source
1
1
1
The funding sources had no role in the design, conduct, or analysis of the study or the decision to submit the
manuscript for publication.
RESULTS
study Population Characteristics
1
1
1
1
1
1
CPM = contralateral prophylactic mastectomy; HER2 = human epidermal
growth factor receptor—2.
* Number (percentage), except where noted.
3 7 6 17 September 2013 Annals of Internal Medicine Voiume 159'Number 6
cancer who will eventually die of the disease (most will die
of the disease, about half will die of the disease, or most
will die of something else) and an item about differences in
breast cancer survival by treatment type (mastectomy, bilateral mastectomy, or lumpectomy with radiation).
Items measuring risk perception included how much
(a lot, some, a little, or not at all) respondents believed
having the "other" breast removed would reduce the subsequent risk for CBC and whether the chance of their
cancer returning was higher than, lower than, or about the
same as that of other women with early-stage breast cancer.
In addition, 1 item assessed how worried women currently
were about breast cancer (a lot, some, a little, or not at all)
and another assessed past concern (extremely, very, somewhat, a little, or not concerned at all) about being diagnosed with CBC in the future.
Patient and disease characteristics for the study population are presented in Table 1. Women completed the
survey an average of 2.1 years (range, 0.1 to 4.3 years) after
having CPM, and the median age at breast cancer diagnosis was 37 years (range, 26 to 40 years). Ninety-four percent of women had reconstructive surgery. Most women
had stage I or stage II breast cancer, and 60% of tumors .
were estrogen receptor-positive.
Approximately one quarter of women were carriers of
a BRCAl or BRCA2 mutation. Twenty-six percent had a
first-degree relative and 62% had a second- or third-degree
relative who had been diagnosed with breast or ovarian
cancer. Among mutation carriers, 4 1 % had a first-degree
relative with breast or ovarian cancer; among noncarriers,
this proportion was 20% (Appendix Table 1, available at
www.annals.org). Most women (56%) with a mother or
sister with breast or ovarian cancer were not mutation carwww.annals.org
Contralateral Prophylactic Mastectomy Among Young Women With Breast Cancer
ORIGINAL
xxESEARCH
Table 2. Importance of Reasons Identified by Women for Choosing CPM*
Reason
1 Desire to lower the chance of getting cancer in other breast
Desire for peace of mind
[ Desire to improve survival or extend life
Desire to prevent breast cancer from spreading to other parts of body
[ Feeling at increased risk for cancer in other breast
Worry that screening wouid not find cancer in other breast
[ Strong famiiy history of breast cancer
Desire to have both breasts looi< the same after surgery
[ Known genetic change, such as BRCA1 or BRCA2 mutation
Desire to foilow physician's recommendation
Desire to mal<e breasts look better
Advice from family or friends
Extremely
Important
Very
Important
Somewhat
Important
Not at All
Important
102 (83)
98 (80)
97 (79)
85 (69)
81 (66)
39 (32)
35 (28)
34 (28)
32 (26)
22 (18)
13(11)
6(5)
18(15)
18(15)
18 05)
20(16)
26(21)
1(1)
5(4)
3(2)
5(4)
9(7)
32 (26)
10(8)
34 (28)
2(2)
35 (28)
29 (24)
38(31)
1(1)
1(1)
5(4)
13(11)
5(4)
28 (23)
57 (46)
18(15)
73 (59)
45 (37)
57 (46)
66 (54)
21 (17)
.
11 (9)
36 (29)
2(2)
16(13)
20 (16)
11 (9)
•
'
Not Sure
1(1)
2(2)
3(2)
2(2)
1(1)
3(2)
1(1)
4(3)
• -
Missing
1(1)
-
8(7)
-
11(9)
4(3)
-
2(2)
CPM = contralateral prophylactic mastectomy.
* Data are numbers (percentages). Participants were queried about additional items related to diagnostic work-up (e.g., magnetic resonance imaging or ultrasonography) and
prior chest radiation, but these items were not included in the table.
riers (Appendix Table 2, available at www.annals.org). A
higher proportion of women who had CPM were mutation
carriers or had a family history of breast or ovarian cancer
compared with women who did not report bilateral mastectomy (Appendix Tables 3 and 4, available at www
.annals.org).
Decision Making
Table 2 lists the responses to the items that assessed
the importance of various factors that¡might have played a
role in the decision to have CPM. Almost all women surveyed (98%) responded that the desire to decrease the risk
for CBC was an extremely or a very important reason. A
similarly high proportion of women ranked peace of mind
(95%), desire to improve survival or extend life (94%),
feeling at increased risk for CBC (87%), and desire to
prevent breast cancer from spreading to other parts of the
body (85%) as extremely or very important factors in their
decision. Few women reported advice from family or
friends or abnormal screening test results (for example,
magnetic resonance imaging or mammogram before surgery) as important reasons for choosing CPM. Appendix
Table 5 (available at www.annals.org) includes importance
of family history as a reason to have CPM among women
with and without a family history of breast or ovarian
cancer.
Overall satisfaction with the decision was high: 80%
of women were extremely confident in their decision to
have CPM, and 90% of respondents would have definitely
chosen CPM if deciding again. Among women who responded to the items about making the choice to have
CPM (« = 120), almost all believed t:hat they knew the
risks and benefits of each option (97%), were clear about
which benefits and risks mattered most (96%), had enough
support and advice to make the choice (92%), and were
sure CPM was the right choice for them (93%). Overall,
87% of respondents scored 4 out of 4, indicating no decisional confiict as measured by the SURE Scale.
www.annals.org
Physicians were the most important sources of information for the decision, followed by family and friends. Of
the women who responded (n = 120), more than half
(n = 68) indicated that they were the first to bring up the
idea of having their contralateral breast removed. Although
80% of women (97 of 121) reported that they spoke with
their physicians to at least some extent about the reasons
for having CPM, only 51% (62 of'122) reported that their
physicians discussed the reasons not to have the surgery.
Many women reported that several outcomes associ-:
ated with surgery were worse than they had expected (Table 3). Thirty-three percent reported that the number of
surgeries or procedures needed was higher than expected,
and 28% indicated that numbness or tingling in the chest
was worse than they had expected. With respect to QOL
outcomes, 42% reported that their sense of sexuality was
worse than they expected after surgery, and nearly one
third indicated that self-consciousness about their appearance was also worse than expected.
Knowledge and Perception of Breast Cancer Risk
Table 4 details risk knowledge and. perception by mutation carrier status. Regarding the risk for CBC without
CPM, mutation carriers estimated that a median of 20 out
of 100 women vvould develop cancer in their other breast
in the 5 years after unilateral breast cancer treatment, and
noncarriers estimated that a median of 10 out of 100
women would. Mutation carriers and noncarriers both estimated that a median of 5 out of 100 women would have
chest wall recurrence in the area of the unaffected breast,
despite having both breasts removed, in the 5 years after
treatment.
More than half of women (56%) without a genetic
mutation believed that the chance of their cancer returning
was about the same as in other women with early-stage
breast cancer, whereas 19% believed that the chance was
higher and 20% thought it was lower. In contrast, among
mutation carriers, 2 1 % believed this risk to be about the
17 September 2013|AnnalsoflnternalMedicinelVolume 159 • Number 61377
IVESEARCH
Contralaterai Prophylactic Mastectomy Among Young Women With Breast Cane
Table 3. Women's Reported Experiences in Relation to Expectations Associated With CPM*
Outcome
1 Cosmetic results
Pain at surgical site
1 Number of surgeries/procedures needed
Numbness or tingling in chest
1 Self-conscious about appearance
Sense of sexuality
I Worry or anxiety about breast cancer
Amount of follow-up imaging or tests
Recovery from reconstructive surgervt
Complications or problems from reconstructive surgeryt
Filling up expanderst
Worse Than
Expected
About What
Was Expected
Better Than
Expected
Does Not
Apply
Missing
34 (28)
31 (25)
41 (33)
35 (28)
38(31)
52 (42) •
28 (23)
14(11)
33 (27)
26(21)
28 (23)
55 (45)
49 (40)
68 (55)
63 (51)
49 (40)
48 (39)
63 (51)
61 (50)
39 (32)
34 (28)
32 (26)
31 (25)
37 (30)
10(8)
19(15)
28 (23)
17(14)
29 (24)
32 (26)
41 (33)
30 (24)
29 (24)
1 (1)
4(3)
1 (1)
5(4)
5(4)
4(3)
1(1)
14(11)
2(2)
24 (20)
25 (20)
2(2)
2(2)
3(2)
1 (1)
3(2)
1
\
i
2(2)-
2(2)
2(2)
8(7)
9(7)
9(7)
CPM = contralaterai prophylactic mastectomy.
* Data are numbers (percentages).
t Only applicable to women who had reconstructive surgery (n = 116).
same as in other women, 32% approximated this risk to be
higher, and 4 1 % estimated it to be lower. Among mutation carriers, 94% believed that removing the unaffected
breast would decrease their risk for CBC by a lot; among
noncarriers, 67% responded that removing the unaffected
breast would reduce their risk for CBC by a lot.
A higher proportion of noncarriers (84%) than mutation carriers (74%) correctly answered that most women
with early-stage breast cancer will die of something other
than breast cancer. Although most carriers (71%) and noncarriers (73%) responded that survival does not differ
among treatment options, a higher proportion of carriers
(24%) than noncarriers (15%) responded that women who
have bilateral mastectomy will live longer.
Breast Cancer Worry
Eighty-seven percent of women (110 of 126) reported
that they had been extremely or very concerned about being diagnosed with CBC in the future. Among women
who responded to the item about current breast cancer
worry (« = 118), 90% were at least a little worried about
their breast cancer at the time of the survey.
When all analyses were done excluding women who
had a BRCA mutation or reported a mutation of uncertain
clinical significance (« = 34), the results did not change
substantially (Appendix Tables 6 to 12, available at www
.annals.org).
DISCUSSION
To our knowledge, our study is the largest to date that
examines decision making, risk perceptions, and psychosocial aspects related to CPM among young women with
breast cancer. Among those at increased risk for CBC due
to a cancer-predisposing mutation and among noncarriers,
desires to reduce the risk for CBC, obtain peace of mind,
and improve survival were cited by most women as important reasons for having CPM. Although mutation carriers
had a more accurate perception of their risk for CBC without CPM and about the efficacy of CPM as a risk-reducing
3 7 8 17 September 2013 Annals oflnternal Medicine Volume 159*Number6
Strategy, noncarriers substantially overestimated their risk
for CBC without CPM.
The 28.5% prevalence of CPM in our cohort exceeds
the prevalence reported in the general population of patients with breast cancer and supports prior studies that
have found that younger women are more likely to have
CPM (1-5, 16). A recent review of the literature found
several studies that describe increasing rates of CPM (1, 2,
4, 5, 17); predictors of having CPM (3, 18-22); and selected outcomes related to CPM, such as satisfaction with
and QOL after surgery (23-29). Few studies, however,
have specifically reported about the decision-making process and perceptions about how CPM might infiuence such
outcomes as disease recurrence and survival.
Almost all women ranked a desire to improve survival
or extend life and a desire to prevent metastatic disease as
extremely or very important reasons for choosing CPM.
However, most women understood that bilateral mastectomy would not lead to an extension of survival. This discordance suggests some degree of cognitive dissonance:
Most women acknowledge that CPM does not improve
survival, but anxiety and fear of recurrence probably influence women during the decision-making process, leading
them to identify their desire to extend life and prevent
metastatic disease as among the most important reasons for
having CPM. Of note, women with a positive mutation
were more likely to identify a survival benefit associated
with bilateral mastectomy. Results from a recent study (30)
suggest that prophylactic mastectomy alone might improve
survival among women with BRCA mutations, but this has
not been conclusively established as an effective mortalityreduction strategy in the absence of oophorectomy in highrisk women (31).
Our results indicate that women who are not at increased genetic risk for contralaterai cancer overestimate
the actual risk, with noncarriers estimating that a median
of 10 women out of 100 would develop CBC without
CPM within 5 years, which exceeds the actual risk of apwww.annals.org
Contralateral Prophylactic Mastectomy Among Young Women With Breast Cancer
proximately 2% to 4% over 5 years (1, 6, 7). Other studies
of women with ductal carcinoma in situ or invasive cancer
have also documented overestimation of risk for CBC and
recurrent disease (32-34). Mutation carriers and noncarriers both overestimated their risk for recurrence in the chest
wall area of the unaffected breast aftet CPM, which is
estimated to be less than 1% (35, 36) over 5 years, thus
underestimating the benefit of the procedure. Almost all
mutation carriers were also more likely to perceive CPM as
greatly reducing the risk for CBC compared with only
67% of noncarriers. In addition, only half of all women
indicated that their physician had talked at least to some
degree about reasons not to have CPM, suggesting that
womeri, particularly those who do not have a genetic mutation, may not be informed by their health care providers
that the risk for CBC is relatively low. Alternatively, some
women may be told but are unable to comprehend their
low risk, may simply not remember it accurately, or are
unable to contextualize how this risk is relevant to them,
possibly as a consequence of anxiety. Risk perceptions have
been associated with anxiety in other breast cancer settings,
including in at-risk women who have not developed the
disease (32, 37, 38).
In our study, physicians were identified as the most
important sources of information; however, only one third
of women cited a desire to follow a physician's recommendation as an extremely or a very important factor in their
decision, and only 1 respondent listed physician recommendation as the single most important reason for having
CPM. This finding is supported by recent studies in which
patient-driven decision making has been identified as an
important determinant of likelihood to have mastectomy
(39, 40).
Our findings suggest a potential role for interventions
that ensure women are sufficiently informed and the actual
risk for contralateral disease is effectively communicated,
particularly in the context of other competing risks, such as
metastatic recurrence. Some evidence suggests that decision
aids can help to improve the quality of the decisionmaking process, specifically by reducing decisional conflict
and enhancing knowledge (41-43). In 1 randomized trial,
breast-conserving surgery was the treatment more frequently chosen by women randomly assigned to the decision aid intervention (44). Given the relationship between
anxiety and overestimation of breast cancer risk, simply
providing information might not be sufficient for wonien
with high levels of distress (32, 45). Better supportive care
and management of anxiety surrounding diagnosis will
probably enhance the effectiveness of any decision aid
intervention.
The effect of CPM pn such outcomes as body image
and sexuality should be an important consideration, given
that young women are more likely than older women to
have impaired QOL after a breast cancer diagnosis (4650). Many women in our sample reported that the eflFect
CPM had on their appearance was worse than they exwww.annals.org
ORIGINAL RESEARCH
Table 4. Breast Cancer Knowiedge and Risk Perception, by
Mutation Carrier Status
Question
Risk for CBC without CPM in the 5 y after
treatment't
1 Median
Mean
1 Range
Risk for chest wall recurrence with CPM in the
5 y after treatment**
Median
1 Mean
Range
Do you think the chance that your cancer will
return is higher than, lower than, or about
the same as in other women with
early-stage breast cancer?§
Higher
'
Lower
I
About the same
Missing
How much did you think that having the other
breast removed would lower your chance
of getting breast cancer in that breast or
chest area in the future?§
A lot
Some
A little
Not at all
With treatment, about how many women
diagnosed with early-stage breast cancer
will eventually die of the disease?§
i
Most will die of breast cancer
About half will die of breast cancer
1 Most will die of something else
Missing
On average, which women with early-stage
breast cancer will live longer?§
1 Women who have a mastectomy
Women who have a lumpectomy and
radiation
1 Women who have a bilateral mastectomy
No difference
Missing
Carriers
(n = 34)
Noncarriers
(n = 89)
20
10
23.1
0-65
16.7
0-90
5
5
10.1
9.0
0-98
0-50
11(32)'
14(41)
7(21)
2(6)
1
1
1
,17(19),
18(20)
50 (56)
4(4)
32 (94)
2(6)
-
60 (67)
21(24)
7(8)
1 (1)
1 (3)
7(21)
25 (74)
1(3)
14(16)
75 (84)
1(3)
8(9)
1(1)
8(24)
24(71)
1 (3)
13(15)
65 (73)
2(2)
CBC = contralateral breast cajicer; CPM = contralateral prophylactic mastectomy.
* Data are respondents' estimates of the number of women out of 100.
i" Three carriers and 3 noncarriers did not answer this question.
Í Three carriers and 2 noncarriers did not answer this question.
§ Data are numbers (percentages).
pected, which is consistent with findings from several other
studies where issues related to appearance and image persisted, in some cases, for many years after surgery (26, 27).
Although a substantial proportion of women (42%) reported that their sense, of sexuality after CPM was worse
than expected, other studies have not found sexual problems to be prevalent. In a large retrospective study. Frost
and colleagues (26) reported that only 23% of women
related CPM to sexual relationship problems. A recent prospective analysis that measured sexual functioning in 60
17 September 2013 Annals of Internal Medicine Volume 159'Number6 3 7 9
ORIGINAL
RESEARCH
Contralateral Prophylactic Mastectomy Among Young Women With Breast Cancer
women before and after CPM (27) detected no significant
changes between the presurgical and postsurgical periods.
Our study has limitations. Although several included
items were from validated measures or were used in prior
studies, the CPM survey itself is not a validated instrument. Respondents might also have misinterpreted certain
survey items. The potential for recall bias must also be
considered because the survey was completed an average of
2 years after surgery and some women might not accurately
recall the details of how they approached their decision to
have CPM.
Our study population was primarily white, nonHispanic, and college-educated; therefore, the generalizabiliry of our findings might be limited. Perceptions and
knowledge about CPM and reasons for having the procedure might differ in a more diverse population. A relatively
large number of women also reported a family history of
breast cancer, a factor that might influence surgical choices.
Furthermore, we only surveyed women who had CPM,
and whether their responses difïer from those of women
who did not have the procedure is unclear. This study
sampled participants from an ongoing prospective cohort
study; ongoing research includes exploring factors associated with other surgical choices and whether these differ
between women who have CPM and those who do not.
Additional clarification of conflicting responses—
specifically, the inconsistencies between the importance of
improved survival as a reason for choosing CPM and the
acknowledgment that CPM is not associated with better
survival outcomes—would be helpful. Future investigations might include focus groups or collection of qualitative data with the goal of elucidating the role of cognitive
biases in making treatment decisions.
Although this is a cross-sectional, descriptive study,
our findings provide important information about an understudied area and highlight the fact that many women
have misperceptions about breast cancer risk. We believe
that this points to a need for better risk communication strategies in an effort to ensure that treatment decision making is truly evidence-based while remaining
patient-centered.
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.
Financiai 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/ConflictOf[nterestForms.do?msNum=M13
-0924.
Reproducible Research Statement: Study protocol, statistical code, and
data set: Available from Dr. Partridge (e-mail, [email protected]).
3 8 0 17 September 2013 Annals of internal Medicine Volume 159 • Number 6
Requests for Single Reprints: Ann H. Partridge, MD, MPH, DanaFarber Cancer Institute, D1210, 450 Brookline Avenue, Boston, MA
.02115.
Current author addresses and author contributions are available at
www.annals.org.
References
1. Tuttle T M , Habermann EB, Grund EH, Morris TJ, Vimig BA. Increasing
use of contralateral prophylactic mastectomy for breast cancer patients: a trend
toward more agressive surgical treatment. J Clin Oncol. 2007;25:5203-9.
[PMID: 17954711]
2. Tuttle T M , Jarosek S, Habermann EB, Arrington A, Abraham A, Morris TJ,
et al. Increasing rates of contralateral prophylactic mastectomy among patients
with ductal carcinoma in situ. J Clin Oncol. 2009;27:1362-7. [PMID:
19224844]
3. King TA, Sakr R, Patil S, Gurevich I, Stempel M, Sampson M, et al. Clinical
management factors contribute to the decision for contralateral prophylactic mastectomy. J Clin Oncol. 2011;29:2158-64. [PMID: 21464413]
4. Jones NB, Wilson J, Kotur L, Stephens J, Farrar WB, Agnese D M . Contralateral prophylaaic masteaomy for unilateral breast cancer, an increasing trend
at a single institution. Ann Surg Oncol. 2009;16:2691-6. [PMID: 19506956]
5. Yao K, Stewart AK, Winchester DJ, Winchester DP. Trends in contralateral
prophylactic mastectomy for unilateral cancer: a report from the National Gancer
' Data Base, 1998-2007. Ann Surg Oncol. 2010; 17:2554-62. [PMID: 20461470]
6. Brewster AM, Parker PA. Current knowledge on contralateral prophylactic
mastectomy among women with sporadic breast cancer. Oncologist. 2011; 16:
935-41. [PMID: 21672945]
7. Murphy JA, Milner T D , O'Donoghue JM. Contralateral risk-reducing masteaomy in sporadic breast cancer. Lancet Oncol. 2013;14:e262-9. [PMID:
23725708]
8. Nichols H B , Berrington de González A, Lacey JV Jr, Rosenberg PS,
Anderson WF. Declining incidence of contralateral breast cancer in the United
States from 1975 to 2006. J Glin Oncol. 2011;29:1564-9. [PMID: 21402610]
9. Reiner AS, John EM, Brooks JD, Lynch GF, Bemstein L, Mellemkjaer L,
et al. Risk of asynchronotis contralateral breast cancer in noncarriers of BRCAl
and BRCA2 mutations with a (kmily history of breast cancer: a report from the
Women's Environmental Gancer and Radiation Epidemiology Study. J Glin
Oncol. 2013;31:433-9. [PMID: 23269995]
10. van Spnindel TG, Schmidt MK, Rookus MA, Brohet R, van Asperen GJ,
Rutgers EJ, et al. Risk reduction of contralateral breast cancer and survival after
contralateral prophylaaic mastectomy in BRCAl or BRCA2 mutation carriers. Br
J Gancer. 2005;93:287-92. [PMID: 16052221]
11. Boughey JG, Hoskin TL, Degnim AG, Sellers TA, Johnson JL, Kasner MJ,
et al. Gontralateral prophylactic mastectomy is associated with a survival advantage in high-risk women with a personal history of breast cancer. Ann Surg
Oncol. 2010;17:2702-9. [PMID: 20853163]
12. Adami H O , Malker B, Holmberg L, Persson I, Stone B. The relation
between survival and age at diagnosis in breast cancer. N Engl J Med. 1986;315:
559-63. [PMID: 3736639]
13. O'Gonnor AM. Validation of a decisional conflict scale. Med Decis Making.
1995;15:25-30. [PMID: 7898294]
14. Legaré F, Kearing S, Glay K, Gagnon S, D'Amours D, Rousseau M, et al.
Are you SURE?: Assessing patient decisional conflia with a 4-item screening test.
Gan Fam Physician. 2010;56:e308-14. [PMID: 20705870]
15. Sepucha KR, Belkora JK, Ghang Y, Gosenza G, Levin GA, Moy B, et al.
Measuring decision quality: psychometric evaluation of a new instrument for
breast cancer surgery. BMG Med Inform Decis Mak. 2012;12:51. [PMID:
22681763]
16. Ellsworth WA, Bass BL, Skoracki RJ, Heller L. Breast reconstruction in
women under 30: a 10-yeat experience. Breast J. 2011;17:18-23. [PMID:
21155919]
17. Stucky GG, Gray RJ, Wasif N , Dueck AG, Pockaj BA. Increase in contralateral prophylactic mastectomy: echoes of a bygone era? Surgical trends for
unilateral breast cancer. Ann Surg Oncol. 20!0;17(Suppl 3):330-7. [PMID:
20853055]
18. Graves KD, Peshkin BN, Halbert GH, DeMarco TA, Isaacs G, Schwartz
MD. Predictors and outcomes of contralateral prophylactic mastectomy among
www.annals.org
Contralateral Prophylactic Mastectomy Among Young Women With BreastCancer
breast cancer survivors. Breast Cancer Res Treat. 2007; 104:321-9. [PMID:
17066320]
19. Metcalfe KA, Lubinski J, Ghadirian P, Lynch H, Kim-Sing C, Friedman E,
et al; Hereditary Breast Cancer Clinical Study Group. Predictors of contralateral
prophylactic mastectomy in women with a BRCAl or BRCA2 mutation: the
Hereditaiy Breast Cancer Clinical Study Group. J Clin Oncol. 2008;26:1093-7.
[PMID: 18195327]
20. Yi M, Hunt KK, Anrn BK, Bedrosian I, Barrera AG, Do KA, et al. Factors
affecting the decision of breast cancer patients to undergo conttalateral prophylactic mastectomy. Cancer Prev Res (Phila). 2010;3:1026-34. [PMID:
20647335]
21. Arrington AK, Jarosek SL, Virnig BA, Habermann EB, Tutde TM. Patient
and surgeon characteristics associated with increased use of contralateral prophylaaic mastectomy in patients with breast cancer. Ann Surg Oncol. 2009; 16:
2697-704. [PMID: 19653045]
22. Chung A, Huynh K, Lawrence C, Sim MS, Giuliano A. (Comparison of
patient characteristics and outcomes of contralatetal prophylactic mastectomy and
unilateral total masteaomy in breast cancer patients. Ann Surg Oncol. 2012;19:
2600-6. [PMID: 22396004]
23. Geiger AM, West CN, Nekhlyudov L, Herrinton LJ, U u IL, Altschuler A,
et al. Contentment with quality of life among breast cancer survivors with and
without contralateral prophylactic mastectomy. J Clin Oncol. 2006;24:1350-6.
[PMID: 16549829]
24. Nekhlyudov L, Bower M, Herrinton LJ, Altschuler A, Greene SM, Rolnick
S, et al. Women's decision-making roles regarding contralateral prophylactic mastectomy. J Nati Cancer Inst Monogr. 2005:55-60. [PMID: 16287886]
25. Montgomeiy LL, Tran KN, Heelan MC, Van Zee K|, Massie M], Payne
DK, et al. Issues of regret in women with contralateral prophylactic mastectomies. Ann Surg Oncol. 1999;6:546-52. [PMID: 10493622]
26. Frost M H , Slezak JM, Tran NV, Williams CI, Johnson JL, Woods JE, et al.
Sadsfection after contralateral prophylactic mastectomy: the significance of mastectomy type, reconstructive complications^ and body appearance. J Clin Oncol.
2005;23:7849-56. [PMID: 16204003]
27. Unukovych D, Sandelin K, Liljegren A, Arver B, Wickman M, Johansson
H, et al. Contralatetal prophylactic mastectomy in breast cancer patients with a
femily history: a prospective 2-years follow-up study of health related quality of
life, sexuality and body image. Eur J Cancer. 2012;48:3150-6. [PMID:
22695071]
28. Frost M H , Hoskin TL, Hartmann LC, Degnim AC, Johnson JL, Boughey
JC. Contralateral prophylactic mastectomy: long-term consistency of satisftiction
and adverse effects and the significance of informed decision-making, quality of
life, and personality traits. Ann Surg Oncol. 2011;18:3110-6. [PMID:
21947589]
29. Tercyak KP, Peshkin BN, Brogan BM, DeMarco T, Pennanen MF, Willey
SC, et al. Quality of life after contralateral prophylactic mastectomy in newly
diagnosed high-risk breast cancer patients who underwent BRCAl/2 gene testing.
J Clin Oncol. 2007;25:285-91. [PMID: 17159191]
30. Sigal BM, Munoï DF, Ktirian AW, Plevritis SK. A simulation model to
predict the impaa of prophylactic surgery and screening on the life expectancy of
BRCAl and BRCA2 mutation carriers. Cancer Epidemiol Biomarkers Prev. 2012;
21:1066-77. [PMID: 22556274]
31. Domchek SM, Friebel T M , Singer CF, Evans DG, Lynch H T , Isaacs C,
et al. Association of risk-reducing surgery in BRCAl or BRCA2 mutation carriers
with cancer risk and mortality. JAMA. 2010;304:967-75. [PMID: 20810374]
32. Partridge A, AdloflFK, Blood E, Dees EC, Kaelin C, Golshan M, et al. Risk
perceptions and psychosocial outcomes of women with ductal carcinoma in situ:
longitudinal results from a cohort study. J Nad Cancer Inst. 2008; 100:243-51.
[PMID: 18270338]
33. Liu Y, Pérez M, Aft RL, Massman K, Robinson E, Myles S, et al. Accuracy
of perceived risk of recurrence among patients with early-stage breast cancer. '
Cancer Epidemiol Biomarkers Prev. 2010; 19:675-80. [PMID: 20160274]
www.annals.org
ORIGINAL
RESEARCH
34. Abbott A, Rueth N, Pappas-Varco S, Kuntz K, Kerr E, Tutde T. Perceptions of conttalateral breast cancer: an overestimation of risk. Ann Surg Oncol.
2011;18:3129-36. [PMID: 21947590]
35. Mamounas EP, Anderson SJ, Dignam JJ, Bear H D , Julian TB, Geyer CE
Jr, et al. Predictors of locoregional recurrence after neoadjuvant chemotherapy:
results from combined analysis of National Surgical Adjuvant Breast and Bowel
Projea B-18 and B-27. J Clin Oncol. 2012;30:3960-6. [PMID: 23032615]
36. Dominici LS, Mittendorf EA, WangX, Liu J, Kuerer H M , Hunt KK, et al.
Implications of constructed biologic subtype and its relationship to locoregional
recurrence following mastectomy. Breast Cancer Res. 2012;l4:R82. [PMID:
22621306]
37. U u Y, Pérez M, Schootman M, Aft RL, Gillanders WE, EUis MJ, et al. A
longitudinal study of (actors associated with perceived risk of recurrence in
women with ductal carcinoma in situ and early-stage invasive breast cancer.
Breast Cancer Res Treat. 2010;124:835-44. [PMID: 20446031]
38. Apicella C, Peacock SJ, Andrews L, Tucker K, Daly MB, Hopper JL.
Measuring, and identifying predictors of women's perceptions of three types of
breast cancer risk: population risk, absolute risk and comparative risk. Br J Cancer. 2009;100:583-9. [PMID: 19209174]
39. Katz SJ, Lantz PM, Janz NK, Fagerlin A, Schwanz K, Liu L, et al. Patient
involvement in surgery treatment decisions for breast cancer. J Clin Oncol. 2005;
23:5526-33. [PMID: 16110013]
40. Hawley ST, G r i ^ JJ, HamUton AS, GrafiFJJ, Janz NK, Morrow M, et al.
Decision involvement and receipt of mastectomy among racially and ethnically
diverse breast cancer patients. J Nad Cancer Inst. 2009;101:1337-47. [PMID:
19720966]
41. O'Brien MA, Whelan TJ, Villasis-Keever M, Gafhi A, Charles C, Roberts
R, et al. Are cancer-related decision aids effective? A systematic review and metaanalysis. J Clin Oncol. 2009;27:974-85. [PMID: 19124808]
42. Belkora JK, Volz S, Teng AE, Moore DH, Loth MK, Sepucha KR. Impact
of decision aids in a sustained implementation at a breast care center. Patient
Educ (3ouns. 2012;86:195-204. [PMID: 21665420]
43. Waljee JF, Rogers MA, Alderman A K Decision aids and breast cancer: do
they influence choice for surgery and knowledge of treatment options? J Clin
Oncol. 2007;25:1067-73. [PMID: 17369570]
44. Whelan T, Levine M, WiUan A, Gaftii A, Sanders K, Mirsky D, et al. Effect
of a decision aid on knowledge and treatment decision making for breast cancer
surgery: a randomized trial. JAMA. 2004;292:435-4l. [PMID: 15280341]
45. Lerman C, Lustbader E, Rimer B, Daly M, Miller S, Sands C, et al. Effects
of individualized breast cancer risk counseling: a tandomized trial. J Nad Cancer
Inst. 1995;87:286-92. [PMID: 7707420]
46. Howard-Anderson J, Ganz PA, Bower JE, Stanton AL. Quality of life,
fertility concerns, and behavioral health outcomes in younger breast cancer survivors: a systematic review. J Nad Cancer Inst. 2012;104:386-405. [PMID:
22271773]
47. Janz NK, Mujahid M, Laniz PM, Fagerlin A, Salem B, Morrow M, et al.
Population-based study of the relationship of treatment and sociodemographics
on quality of life for early stage breast cancer. Qual Life Res. 2005;l4:l467-79.
[PMID: 16110927]
48. Kroenke CH, Rosner B, Chen WY, Kawachi I, Colditz GA, Holmes M D .
Funcrional impact of breast cancer by age at diagnosis. J Clin Oncol. 2004;22:
1849-56. [PMID: 15143077]
49. Baucom D H , Porter LS, Kirby JS, Gremore T M , Keefe FJ. Psychosocial
issues confronting young women with breast cancer. Breast Dis. 2005;23:103-13.
[PMID: 16823173]
50. Wenzel LB, Fairdough DL, Brady MJ, Celia D, Garrett KM, Kluhsman
BC, et al. Age-related differences in the quality of life of breast carcinoma patients
after treatment. Cancer. 1999;86:1768-74. [PMID: 10547550]
17 September 2013 Annals of Internal Medicine Volume 159 • Number 6 381
Copyright © American College of Physicians 2013.