PSYCHO-ONCOLOGY

Psycho-Oncology 12: 161–172 (2003)

Published online 10 December 2002 in Wiley InterScience (www.interscience.wiley.com). DOI: 10.1002/pon.637

LIVING WITH THE WORRY OF CANCER:

HEALTH PERCEPTIONS AND BEHAVIORS
OF ELDERLY PEOPLE WITH SELF, VICARIOUS,
OR NO HISTORY OF CANCER
YAEL BENYAMINIa,*, COLLEEN S. McCLAINb, ELAINE A. LEVENTHALc and HOWARD LEVENTHALb
a
Bob Shapell School of Social Work, Tel Aviv University, Tel Aviv, Israel
b
Center for Research on Health and Behavior, Institute for Health, Rutgers, the State University of New Jersey,
30 College Avenue, New Brunswick, New Jersey, USA
c
Robert Wood Johnson Medical School, University of Medicine and Dentistry, New Brunswick, New Jersey, USA

SUMMARY

Cancer is a major health threat that has a long-term impact on quality of life and health worries. The present study is
focused on two major issues: (1) the impact that a history of cancer has on reactions to other diseases, in addition to
cancer and general health worries; and, (2) the impact that having lived with someone who had cancer has on health
perceptions and behaviors. All 108 participants had osteoarthritis, a symptomatic but benign disease
(49 people have had cancer, 22 had lived with a cancer patient, and 37 had not had any close experience with
cancer). Cancer and health worries were lowest among the people with vicarious experience, while monitoring for
bodily signs was similar and highest in both cancer experience groups. Reactions to arthritis suggest more vigilance
among people who have had self or vicarious experience with cancer, while reactions to ambiguous symptoms
suggest vigilance especially among those with a personal history of cancer. Overall, the findings suggest that the
effects of self-experience with cancer and of close experience with a cancer patient may be long-term and impact
upon both health perceptions and behaviors. Copyright # 2002 John Wiley & Sons, Ltd.

INTRODUCTION most long-term survivors of adult cancer are

In the past few decades there have been continuing
declines in mortality rates for most types of cancer
while estimates for new cancer cases have re-
mained stable or increased for most types, result-
ing in increasing numbers of long-term survivors
of adult cancer (Landis et al., 1998). Compared to
the vast body of research on adjustment to cancer,
research on the long-term impact of having had
cancer is relatively recent and scarce. Studies that
focused on long-term cancer survivors (CS) dealt
mostly with general issues of quality of life (see
review by Gotay and Muraoka, 1998) or more
specifically with reports of increased worry about
cancer recurrence (e.g. Ferrell et al., 1998). Since
*Correspondence to: Yael Benyamini, PhD, Bob Shapell
School of Social Work, Tel Aviv University, Tel Aviv 69978,
Israel. E-mail: benyael@post.tau.ac.il
elderly people, many of them cope with a variety
of other health threats and symptoms. Common,
non-cancerlike symptoms have been found to play
a major role in evoking worry about cancer
(Easterling and Leventhal, 1989). It is also possible
that past experience with cancer influences elderly
people’s ways of coping with other, benign,
illnesses. Our main question is, does having had
cancer affect the ways in which one deals with
other diseases? In other words, to what extent does
a history of cancer affect elderly people’s percep-
tion of current symptoms/diseases and their
reactions to them?
Our initial goal was to compare health and
illness perceptions and behaviors of elderly people
with and without a history of cancer, who all have
osteoarthritis so they regularly experience physical
symptoms. Our first hypothesis is: (1) CS differ
from controls in measures that directly indicate
perceived cancer risk, and also show more vigilance

Copyright # 2002 John Wiley & Sons, Ltd. Received 20 April 2001
Accepted 27 March 2002
162 Y. BENYAMINI ET AL.
in their reactions to a benign but symptomatic
disease such as arthritis. In addition, we planned to
explore the impact of direct but not personal
exposure to cancer by distinguishing between
people with no cancer experience (no cancer
group, NC), and those who had direct contact
with cancer when living with an adult cancer
patient (usually a spouse or a parent) but have
never had any form of the disease themselves
(vicarious cancer group, VC).
We are unaware of studies that targeted close
experience with a cancer patient, rather than
increased risk because of family relations, as the
main issue that may affect future coping with health
threats. A few studies suggest higher general and
cancer-specific distress related to increased risk for
cancer due to family history of cancer (e.g. Kash
et al., 1992; Lerman et al., 1993). A common
interpretation of such findings is that family history
increases perceived risk, assuming that women are
aware of the link between family history and
increased risk for cancer. However, as many
women with a family history of cancer are unaware
of the link between risk for breast cancer and family
history (Drossaert et al., 1996), the investigators
suggested that the commonly reported increased
perception of cancer risk among women with a
family history may be due in part to their having
experienced the disease at close range. Even when
women do report knowledge of family history as a
risk factor for breast cancer, risk perceptions may
be unaffected by this knowledge, possibly because
of people’s tendency to downplay their personal
risk (Absetz et al., 2000). Findings from this latter
study also suggest that experience at close range
may be as important, if not more important, than
knowledge of the role of family history, as a
determinant of cancer risk perceptions. Greater
rates of participation in mammography among
women who have a friend or family member with
breast cancer have been reported (King et al.,
1995), and in another study, open-ended explana-
tions for participation in a cancer screening project
centered around relatives’ or friends’ experiences
with breast cancer (Vogel et al., 1990).
Altogether, these findings suggest that the role
of personal experience with cancer should be
further explored. However, these findings are
limited to a small number of studies, and to the
specific context of perceptions of risk for breast
cancer, and are consistent only in suggesting that
experience with cancer has an impact, but not in
their specific findings. Therefore our hypotheses
Copyright # 2002 John Wiley & Sons, Ltd.
regarding the ways in which the VC group differs
from the CS and the NC groups are based mainly
on existing knowledge of health perceptions and
health behaviors, in particular, on the principles of
the common-sense approach to illness cognitions
(Leventhal and Diefenbach, 1991).
First, it is unlikely that living with a close person
with cancer will have no long-term effect. We
propose that vicarious experience with such a
life-threatening disease will have a long-term
impact on coping with health in general and with
cancer worry in particular. Second, although some
of the consequences of personal and vicarious
experiences of cancer may be similar, it is unlikely
that they will have the same long-term impact, as
these are clearly very different experiences.
Thus, our second hypothesis is that the VC group
will react to current health threats and symptoms
differently than the other two groups. There are two
contrasting hypotheses regarding the direction of
these differences:
(2a) The ‘dose response’ hypothesis: CS are more
worried and vigilant than VC, who are more
worried and vigilant than NC (CS>VC>NC).
(2b) The normalization/repression hypothesis: VC
are less worried and vigilant than the other two
groups (CS4VC5NC). Two separate processes
can account for such differences, normalization
and repression (see explanation below).
The parallel response model of fear commu-
nications (Leventhal, 1970) states that a threat,
such as cancer, involves both danger and fear.
Most people encounter only the threat of cancer,
that produces fear. Caregivers are forced to cope
first of all with the danger, and this concrete
experience could ‘normalize’ the threat, including
facing and overcoming fears and worries. Thus,
the VC will show less worry about cancer and
about their health in general than the CS, since
they have no specific fears of recurrence or trauma
from the treatments, and also less worry than the
NC, whose perceptions of cancer may be based on
more abstract fears and myths. The model also
indicates that adaptive acts of coping with the
danger can be independent of the emotional
coping with the fear: While cancer-related fear
may subside in those who have lived with cancer
patients, the likelihood that protective acts will be
carried out (e.g. self-monitoring for signs of
cancer) need not subside.
The alternative explanation to the possibility of
the VC reporting less cancer worry than the CS or
the NC, is in terms of repression. This explanation
Psycho-Oncology 12: 161–172 (2003)
 LIVING WITH THE WORRY OF CANCER
is based on the premise that the VC have not
developed feelings of self-efficacy following
successful coping with such a feared disease, but
they have been directly exposed to the horrors of
the disease. Their fears may be more intense and
real, compared with the other groups, especially
when there is a genetic relationship with the
patient and/or when the patient did not survive
the disease. Intense fear may be so difficult to deal
with directly, that people may repress those
negative, anxiety-eliciting feelings, especially if
they feel that they do not have any means of
reducing the threat (Leventhal, 1970). Repressive
copers avoid threatening information and tend to
report low levels of distress, depression, and anger,
but act as if they are aroused and concerned about
the health threat (Weinberger et al., 1979). There-
fore, if those who have lived with cancer patients
report less anxiety and distress but act as if they
are as concerned about the threat than the other
groups (i.e. monitor for signs of cancer) this may
be an indication that they are repressing their
health-related emotions.
In sum, we will test hypotheses 2a and 2b above
by assessing the extent and direction of differences
among the three groups (CS, VC, NC) in their
reactions to health threats. These hypotheses are
not in contradiction with hypothesis 1: Although
we expect both the CS and the NC to report the
higher levels of health-related worries compared to
the VC, the CS will probably be higher than the
NC, especially in measures that are directly related
to fears of recurrence, such as perceived vulner-
ability to cancer.
Our sample is comprised of 108 elderly people
with osteoarthritis, so that all of them share the
worries about health that come with old age, and
experience these worries in the context of a
symptomatic but non-life-threatening disease. We
will examine differences between the three groups
regarding the following three aspects: (1) cancer
and health worries; (2) coping with arthritis; and,
(3) coping with ambiguous physical symptoms.
METHOD
Sample
Participants were 108 residents of a retirement
community, who reported having osteoarthritis.
Forty-nine of them also reported a history of
Copyright # 2002 John Wiley & Sons, Ltd.
163
cancer (melanoma – 15, prostate cancer – 13,
breast cancer – 9, colon cancer – 6, uterine/ovarian
– 5, other – 5; four of these people had had more
than one type of cancer). Of the remaining 59
participants, 22 reported having lived with some-
one who had cancer (12 with a spouse, 8 with a
blood relative, and 2 with both a spouse and a
blood relative). Thirty-seven additional partici-
pants did not report any self or vicarious cancer
experience. Mean age in all 3 groups was 77–78;
percent female was 48, 40, 57, respectively, in the
CS, VC, and NC groups. The sample was
predominantly white, affluent and educated (only
6% have less than full high school education).
Participant recruitment
Participants were recruited from among the
Rutgers Aging and Health Study (RAH) sample
(a longitudinal study, N ¼ 851 at baseline). The
current sub-study was conducted 4 years after
the RAH baseline. Medical histories collected in
the RAH study enabled us to identify all
participants who reported having osteoarthritis
(over 50% of the RAH sample), and among those,
to identify 70 participants who reported having
had cancer. We had no prior information regard-
ing VC history, and did not wish to allude our
participants to this aspect of the study, so that
neither their willingness to participate nor their
responses would be affected. Therefore the sample
was recruited in a way that would enable us to test
for differences between CS and non-CS, and only
after collecting the data for the current study, we
were able to determine that there is a sufficient
number of VC in order to split the non-CS group
into VC and NC and test the relevant hypotheses.
Recruitment was based first on personal cancer
history, defined as reporting having had major
cancer more than a year ago and not currently
receiving any type of treatment for cancer. Then,
for each ex-cancer patient recruited, we found at
least one participant with no history of any type of
cancer (major, or minor, non-melanoma skin
cancers), who was matched on sex, age (within a
5-year range), and functional ability (closest
match, using the scale described below).
Altogether, 145 people were contacted by phone
and asked to volunteer for a sub-study of the RAH
study that was ‘aimed at learning how people
cope with osteoarthritis and how people with
osteoarthritis cope with other illnesses and health
Psycho-Oncology 12: 161–172 (2003)
164 Y. BENYAMINI ET AL.
threats’. Four people were ineligible since they
reported experiencing no arthritis symptoms at all.
Twenty of the remaining 141 people refused to
participate (14 CS and 6 with no cancer history;
86% participation). Thirteen of the 121 people
interviewed were determined to be ineligible for
the study: three were currently coping with new or
recurrent cancer; for 2 it was unclear whether they
had had melanoma or a non-melanoma skin
cancer; 2 of the no-cancer group reported basal
cells; and 2 additional CS and 4 no-cancer
reported experiencing no arthritis symptoms at
all, or musculo-skeletal symptoms not due to
arthritis. Thus, data from 108 participants was
used for the analyses reported here (49 CS and 57
with no cancer history; data from the interview
itself was used to split the latter group into 22 VC
and 37 NC).
Procedure
Interviews were conducted at participants’
homes and included questions about their health,
arthritis, and cancer, in this order, so that inquiry
about cancer could not affect responses to general
and arthritis questions. Interviewers read all
questions aloud and recorded the participants’
responses directly into the computer.
Measures
The interview included measures relevant to
the hypotheses, and indicators of general health
and of arthritis status, added in order to assure
that the groups were equivalent in these respects.
Unless otherwise noted, for all multi-item scales
we used a 5-point response scale, 1= ‘not at all’,
2=‘a little bit’, 3=‘moderately’, 4=‘quite a bit’,
5=‘very much’, and computed the mean of
responses to the items.
General health status. (1) Functional (dis)ability
was assessed in a RAH interview 3 months before
the current sub-study, regarding 18 activities of
daily living and instrumental activities of daily
living (Johnson and Wolinsky, 1993; Cronbach
a ¼ 0:85).
(2) Self-assessed health – participants were asked
to rate their health in general, on a five-point scale
from poor (1) to excellent (5). Self-assessed health
Copyright # 2002 John Wiley & Sons, Ltd.
has been shown to predict mortality and other
health outcomes (Idler and Benyamini, 1997;
Benyamini and Idler, 1999). In addition, they were
asked ‘‘if you never had arthritis, what would you
say your health is?’’.
(3) Health care utilization – participants were
asked how many times in the past 6 months they
have been to see a health care professional, for an
illness or a medical problem.
Arthritis status. (1) Number of body areas
affected by arthritis (of 12 areas; right and left
sides asked separately where applicable). Re-
sponses were coded as no=0, unsure=0.5, or
yes=1.
(2) Arthritis pain in the past month was assessed
using the 5-item pain sub-scale from the Arthritis
Impact Measurement Scales (AIMS, Meenan et al.,
1980, and AIMS2, Meenan et al., 1992; 5-point
response scales ranged from ‘none’ to ‘severe’ for
pain level, and from ‘no days’ to
‘all days’ for the other 4 items; a ¼ 0:79).
(3) Arthritis limitations were assessed by four
items (a ¼ 0:90): ‘‘On a typical day, how much
does your arthritis stand in the way of things you
NEED to do?’’, and ‘‘On a typical day, how much
does your arthritis stand in the way of things you
LIKE to do?’’. Both questions were repeated
asking about a bad day.
Cancer and health worries. (1) Cancer monitor-
ing behavior – all participants were asked if there
are any indications or warning signs of cancer that
they monitor regularly. If so, s/he was then asked
to list the warning signs monitored for; the total
number of signs monitored for ranged from 1 to 5.
The most frequently mentioned signs included
lumps, enlarged lymph nodes, blood in the stool,
and new growths on the skin.
(2) Cancer-specific worry was measured using
the following 5 items (a ¼ 0:83): ‘‘Is avoiding
cancer something that you’re concerned about?’’;
‘‘How worried are you about getting cancer?’’;
‘‘Do TV or radio programs or newspaper articles
about cancer make you feel vulnerable to it?’’;
‘‘When you read or hear something about cancer,
does it make you think that you might get a similar
disease?’’; ‘‘Does thinking about cancer make you
anxious?’’.
(3) General health worry was assessed using the
following 3 items (a ¼ 0:68): ‘‘When you feel a new
sensation or symptom in your body, how much do
Psycho-Oncology 12: 161–172 (2003)
 LIVING WITH THE WORRY OF CANCER 165

you worry about what it might be?’’; ‘‘When you years, and then to the past 5 years (75% of the
notice a new symptom or sensation, do you find it participants recalled an episode from the past
difficult to take your mind off it?’’ and, ‘‘In year). The questions regarding the arthritis
general, how much do you worry about your symptom episode were repeated for the ambiguous
health?’’ symptom episode.
(4) Perceived vulnerability to cancer. In a RAH
interview 3 months before the arthritis sub-study,
participants were asked how vulnerable do they
RESULTS
feel to cancer on a scale from 0 to 10: 0=no
chance at all, 5=50/50 chance of getting the
disease, 10=certain this will happen. General health status and arthritis status of the
three study groups
Coping with arthritis. (1) Arthritis symptom
The three groups did not differ significantly in
episode: All participants were asked to think about
their general level of health and in the level of
a day in the past week or two when their musculo- specific consequences of their arthritis, as can be
skeletal problems had been at their worst. If they
seen from their self-assessed health, functional
were unable to recall such a day, the time frame
limitations, rates of health care utilization, number
was extended to the past 2 months. Participants
of body areas affected by arthritis, arthritis pain,
had the option to report that they could not
and arthritis limitations. Thus, although during
remember having had such a day. All participants
recruitment two groups, the CS and the non-CS,
who reported a bad day of arthritis were asked
were matched on health (and demographic)
about: (a) the severity of their symptoms that day,
characteristics, splitting the sample into three
by rating ‘‘when the symptoms began, how much
groups did not result in significant differences
pain or discomfort did you have?’’, and, ‘‘how
among them. The groups were also similar in their
much did these symptoms interfere with your socio-demographic characteristics. The difference
physical movement that day?’’; (b) self-perceived
in the percentage of women was not significant,
cause – ‘‘At the moment, what did you think might
and there were no gender differences in the
be causing these symptoms?’’ (an open-ended
measures used in this study. Therefore, and in
answer); (c) medical consultation – ‘‘That day or
light of the relatively small size of the three groups,
that week, did you call or think of calling your
no further analyses were conducted separately for
doctor or another health care professional about
women and men.
these symptoms?’’ (yes/no); and, (d) concern with
cause – ‘‘Did you want to talk to your doctor to
make sure it was caused by [the cause they
Effects of cancer experience on cancer and health
mentioned before]?’’ (yes/no).
worries
(2) Emotional reaction to arthritis was assessed
using 8 items adapted from Usala and Hertzog
The tendency to monitor for indications or
(1989), two each for depression, anxiety, anger and
warning signs of cancer was compared for the
fatigue (the two highest loading items out of 6 for
three groups: 71% of those in the CS group, 68%
each mood that were included in the RAH study;
of those in the VC group, and 41% of those in the
a ¼ 0:90 for the 8-item scale). The items were
NC group reported that they monitor regularly for
adapted specifically to responses to arthritis:
at least one sign (p ¼ 0:01, tested by the w2 test for
‘‘When your arthritis acts up, does it make you
the likelihood ratio, which was used for testing
feel anxious (/mad/blue/tired/tense/sad/bad-tem-
the significance of differences among the groups in
pered/exhausted)?’’
all categorical variables). The number of signs
monitored for did not differ significantly among
Ambiguous symptom episode. Subjects were the groups. The correlations between cancer
asked if they could remember a time within the worry and number of signs of cancer monitored
past few months when they had symptoms that were r ¼
0:03 (ns), r ¼ 0:02 (ns), and r ¼ 0:51
when they began, they were uncertain as to what (p50:01), for the CS, VC, and NC, respectively.
caused them. If they were unable to recall such a Thus, monitoring was unrelated to cancer worry
day, the time frame was extended to the past 2 for the CS and the VC, in contrast with the NC,

Copyright # 2002 John Wiley & Sons, Ltd. Psycho-Oncology 12: 161–172 (2003)
166 Y. BENYAMINI ET AL.
among whom monitoring was conducted only by
those who worried about cancer. These findings
show a similarity between the CS and the VC
groups, and differences between them and the NC
group.
In contrast with the behavioral measure of
monitoring for signs of cancer, reports of cancer
worry and of general health worry revealed a
pattern that conforms with the normalization/
repression hypothesis (see Table 1): the VC group
reported significantly lower levels on these mea-
sures, compared to both the CS and the NC
groups. Regarding perceived vulnerability to
cancer, a similar pattern appeared, with a more
pronounced difference between the CS, who
reported higher levels, and the other two groups.
Next, a one-way ANOVA was conducted,
including a test of the apriori contrast comparing
the VC, on the one hand, with the CS and the
NC, on the other hand (according to hypothesis
2b, the normalization/repression hypothesis). The
contrast was significant for general health worry
and for perceived vulnerability (p50:05), and
borderline (p50:06) for cancer worry (see Table
1). However, regarding perceived vulnerability, the
descriptive data suggest that the main difference is
between the CS and the other two groups, and
indeed an additional post-hoc test showed that this
difference is significant (p50:001). This latter
finding supports our first hypothesis, regarding
differences between CS and NC in cancer-
specific measures, while the rest of the data
regarding differences between the VC group
Table 1. Analysis of variance for worry about cancer, worry about general health, and perceived vulnerability to cancer among
cancer survivors (CS, n ¼ 49), participants with vicarious cancer experience (VC, n ¼ 22), and participants with no history of
cancer (NC, n ¼ 37)
Variable Group Mean (  S.D.)
Worry about cancer CS 2.22 (  0.73)
VC 1.81 (  0.71)
NC 2.09 (  0.84)
Worry about health CS 2.09 (  0.73)
VC 1.65 (  0.54)
NC 2.04 (  0.60)
Vulnerability to cancer CS 4.90 (  2.74)
VC 2.77 (  2.18)
NC 3.22 (  2.15)
Copyright # 2002 John Wiley & Sons, Ltd.
and the other two groups in health and cancer
worries, support the normalization and repression
hypotheses.
Effects of cancer experience on coping with arthritis
Seventy-six percent of the sample reported
having had a recent bad day of arthritis (see
Table 2). Most of those participants (over 90%)
reported that they had thought about what might
be causing their symptoms during that bad day.
Among these participants, a cause directly related
to arthritis was mentioned significantly more often
by the NC group, compared to the other two
groups (the rest of the participants attributed their
symptoms that day to a large variety of other
causes, even though they were asked specifically
about a bad day of arthritis). Of the participants
reporting a bad arthritis day, about a quarter
reported calling their doctor regarding the bad day
symptoms, with little variation among the three
groups. When the 19 participants who called their
doctor and also reported thinking of a specific
cause were asked whether they wanted to talk to
their doctor to make sure the symptoms were
indeed caused by what they thought, 6 of 8 CS
(75%), 2 of 3 VC (67%), and 3 of 8 NC (37%)
responded affirmatively. Although the difference in
frequency between the NC and the other two
groups is large, it is not significant due to the small
numbers (p ¼ 0:29). These numbers suggest that
the NC may be more confident that a flare-up of
Fð2;105Þ p Contrast (VC vs CS+NC)
tð105Þ pð2
tailedÞ
2.21 0.11 1.89 0.06
3.62 0.03 2.64 0.01
7.80 0.001 2.20 0.03
Psycho-Oncology 12: 161–172 (2003)
 LIVING WITH THE WORRY OF CANCER 167

Table 2. Positive responses to questions about coping with an arthritis symptom episode and an ambiguous symptoms episode
among cancer survivors (CS, n ¼ 49), participants with vicarious cancer experience (VC, n ¼ 22), and participants with no history
of cancer (NC, n ¼ 37)

CS VC NC

Number/total % Number/total % Number/total %

Arthritis symptom episode

Reported an episode** 42/49 86 14/22 66 26/37 70
Thought of a specific possible cause of symptoms 39/42 93 13/14 93 23/26 89
Cause mentioned was related to arthritis* 20/42 48 7/14 50 20/26 77
Called doctor 9/42 21 4/14 29 8/26 31
. . . to make sure it was caused by 6/8 75 2/3 67 3/8 37
[cause mentioned above]

Ambiguous symptom episode

Reported an episode 37/49 76 17/22 77 22/37 62
Thought of a specific possible cause of symptoms 29/37 78 14/17 82 16/22 73
Called doctor 18/37 49 9/17 53 11/22 50
. . . to make sure it was caused by 16/17 94 3/6 50 7/12 58
[cause mentioned above]*

*p50:05; **p50:10.

joint symptoms is indeed due to their arthritis, and group, although a test of the interaction effect of
less concerned about verifying the cause with their group by difference in self-assessed health was not
physician, compared with the other two groups. significant.

Emotional reaction to arthritis. When asked

about negative moods that arise when their
arthritis acts up, the CS group reported higher
levels (1.96  0.86), compared with the VC
(1.48  0.76). The NC reported levels in between
the other two groups (1.73  0.63). The contrast
hypothesized by the repression/normalization
hypothesis (2b) comparing the VC to the CS+NC,
showed this difference to be significant (p50:05).
Thus, although arthritis interfered with the CS
participants’ lives to the same extent as in the other
groups, they seem to be less tolerant of these
symptoms. The VC responded in line with the
normalization/repression hypothesis: they are either
less disturbed by their arthritis symptoms, or less
willing to report negative moods.
Self-assessed health without arthritis. All three
groups said they would have rated their health as
better, if they had not had arthritis: Self-assessed
health ratings increased from 3.22 to 3.53 in the
CS group (p50:001), 3.55 to 3.77 in the VC
(p ¼ 0:06). and from 3.19 to 3.70 in the NC group
(p50:001). The difference is greater in the NC
Effects of cancer experience on coping with
ambiguous symptoms
When asked about symptoms that when they
began they were uncertain as to what caused
them, 76% of the CS, 77% of the VC, and 62%
of the NC reported such an episode (p ¼ 0:32; see
Table 2). When asked whether when the symptoms
began, they thought about what might be causing
them, most of the participants in all three groups
reported a specific cause (ns, p ¼ 0:77). A large
variety of causes was mentioned and no single
cause was frequently mentioned, or was specific to
one group. Roughly half of the participants in
each group reported calling their doctor regarding
these symptoms. Of those who called their doctor
and also reported thinking of a specific cause, 16 of
17 CS (94%), 3 of 6 VC (50%), and 7 of 12 NC
(58%) called their doctor to make sure it was
caused by what they thought had caused it
(p50:05). Again, the numbers are small, but they
do suggest risk-aversion among the CS, who are
quick to check their theory about the cause of the
ambiguous symptoms with their doctor (and easily

Copyright # 2002 John Wiley & Sons, Ltd. Psycho-Oncology 12: 161–172 (2003)
168 Y. BENYAMINI ET AL.
report this). In contrast, about half of the VC and
of the NC did not call the doctor with the intention
of confirming their specific theory about the
symptoms (or were reluctant to disclose this).
DISCUSSION
Our goal was to assess whether past experience
with cancer can affect the way one copes with
future health threats. We distinguished between
actual personal experience of cancer (the CS
group), and the close but non-personal experience
of having lived with someone who had cancer (the
VC group), in comparison with elderly people who
have not had any close encounter with cancer (the
NC group). Our first hypothesis states that the CS
differ from the other groups in reactions to health.
It is supported in regard to measures that directly
indicate higher perceived risk of cancer: (1) the CS
perceive themselves to be more vulnerable to
cancer compared with the two groups who have
not had cancer; (2) when experiencing a bad
episode of arthritis, they are less confident that the
cause is indeed arthritis, and more likely to call
their doctor in order to confirm their perceived
cause for these symptoms; (3) when experiencing
ambiguous symptoms, they are just as likely as
others to call the doctor, but almost all of those
who called their doctor, did so for reassurance, i.e.
in order to confirm their theory about the specific
cause for these symptoms. These may be different
manifestations of fear of recurrence.
The health behaviors and perceptions of the NC
group are according to what one would expect
from a group of elderly people who, like all of us,
hear a lot about cancer, but have not had any first-
hand experience with it: They report worry about
cancer (and about their health in general), but they
do not feel specifically at risk (vulnerable) for
cancer. The more they worry, the more they search
their body for signs of cancer. However, when they
experience familiar benign symptoms of arthritis,
they are quite confident that arthritis is indeed the
cause, and if they do call their doctor regarding
these symptoms, it is usually not in order to
confirm the cause. When they experience ambig-
uous symptoms, they are just as likely as others to
call their doctor, but in contrast with the CS, it is
not always with the intention of confirming a
specific cause.
The data regarding the VC group reveal a more
complex picture, corresponding with our second
Copyright # 2002 John Wiley & Sons, Ltd.
hypothesis that proposes that this group is
different from both the CS and the NC groups.
The direction of these differences is in line with
hypothesis (2b), the normalization/repression hy-
pothesis (in contrast with hypothesis (2a), the
dose–response hypothesis). The VC group is as
likely as the CS group to act as if they are feel at
risk of cancer, i.e. they regularly monitor their
bodies for signs of cancer. They are also less
confident that their symptoms on a bad arthritis
day are indeed due to arthritis. However, they
report significantly less cancer worry and general
health worry, low perceived vulnerability to
cancer, less emotional distress in the face of
arthritis flare-ups, and, when experiencing ambig-
uous symptoms, they are less likely to report that
they called their doctor in order to confirm their
suspicion regarding a specific cause.
Our findings suggest that not only a personal
history of cancer, but also close experience with
the disease, can affect the ways people react to
health threats in the future. Any type of experi-
ence, personal or vicarious, seems to result in
greater vigilance. However, vicarious experience
seems to result in lower perceptions of risk and less
worry about cancer, and about other health
threats. Do these findings regarding the VC group
indicate normalization or repression? Regular
monitoring for signs of cancer, coupled with low
levels of reported worry and vulnerability are
predicted by both explanations. Normalization
refers to a less threatening perception of cancer
that stems from having been in direct contact with
it, so that instead of holding abstract fears from it,
one deals with more concrete worries, that can be
managed by adherence to recommendations for
prevention and screening. This may lead people to
feel less vulnerable, because they are taking
measures to reduce their risk. According to this
explanation the VC group’s lower reports of risk
and worry are not biased; they reflect their realistic
assessment of cancer and health risk. Normal-
ization extends beyond their attitude to cancer
itself: they seem to have re-calibrated their ratings
of health, similar to the CS. Both of these groups
view their arthritis as less serious, while among the
NC, for whom arthritis may be one of the worst
health problems they had ever encountered, there
is a large difference between actual self-assess-
ments of health, and a similar assessment ‘‘if they
did not have arthritis’’. Since the groups do not
differ on any of a wide range of health and
functioning measures, the difference between
Psycho-Oncology 12: 161–172 (2003)
 LIVING WITH THE WORRY OF CANCER
ratings of health ‘with’ and ‘without’ arthritis,
probably does not reflect actual differences in the
severity of their illness, but in its perception as a
major health problem. This finding resembles the
arguments presented by Breetvelt and Van Dam
(1991) regarding a response-shift among cancer
patients, in the direction of under-reporting of
symptoms that undermine quality of life, due to a
change in the internalized standard on which
patients base their health perceptions.
Repression could exhibit itself in similar ways,
i.e. less reported worry and anxiety along with
adherence to screening recommendations, but the
underlying motivation is avoidance of coping with
the threatening emotions that cancer arouses. The
low levels of negative emotion reported in response
to flare-ups of arthritis, suggest that these people
may have developed a repressive coping style
regarding their health in general. If these lower
levels of negative affect were due only to a shift
toward a less severe perception of illnesses such as
arthritis, following their encounter with cancer, we
would expect to see similar lower levels among the
CS, and this is not the case. The data regarding
seeking care in order to reassure oneself regarding
a specific perceived cause of symptoms is based on
a very small number of VC, so that it is difficult to
draw conclusions. These data tend to support the
repression explanation: When the symptoms are
reported to be a flare-up of arthritis, the VC are
just as likely as the CS to call the doctor in order to
reassure themselves regarding their cause; how-
ever, when the symptoms are ambiguous, they
seem to be less willing to call the doctor in order to
talk about the cause. This may be due to the
anxiety that certain possible causes arouse among
these participants.
If repression is the explanation, then the lower
reports of health worries do not reflect belief in
actual lower risk, but rather a bias stemming from
the need to protect themselves from threatening
thoughts; they are an outcome of worry about
health and not a reflection of low worry. While
repression has typically been referred to as a
personality trait (Weinberger et al., 1979; Myers,
2000), these data suggest that repression could also
develop as a style of coping with health threats at
older age, following later life traumas.
The VC may repress their affective response to
health threats, but they do take necessary precau-
tions such as monitoring their bodies, and this
may enhance their feelings of controllability over
their health (and consequently their feelings of
Copyright # 2002 John Wiley & Sons, Ltd.
169
invulnerability). While the normalization explana-
tion also predicts this process, data regarding
repressors suggests that these perceptions may be
biased: Repressors’ perceptions of vulnerability for
health-related events have been found to be
optimistically biased, especially for events that
are perceived as highly controllable (Myers and
Reynolds, 2000).
In sum, although it is quite clear that the VC in
our study react to health threats in ways that differ
from the CS and the NC, the mechanism that
accounts for these differences is less clear, and calls
for further investigation. These findings highlight
the difficulty in interpreting reports of low vulner-
ability: Are they the cause of perceived low risk or
the result of health precautions? (Weinstein and
Nicolich, 1993), or the outcome of repressive/
avoidant coping? Grouping together VC and NC
in a ‘no cancer history’ group because of their
lower actual or perceived vulnerability to cancer may
mask important differences between these groups.
Our study is clearly limited by the small size of
our sample. However, the existing RAH sample
offered us a unique opportunity of recruiting a
sample of highly symptomatic individuals, half
with and half without a history of cancer, without
having to inquire about their medical history at the
stage of recruitment, which could have affected
both participation rates and the content of the
responses to our interview. In addition, our sample
is not representative of the elderly population.
Participation rates from among the RAH sample
were very high (though somewhat lower among
the CS), but the RAH sample itself was recruited
from an educated, upper-middle class, mostly
white population (for details see Benyamini et al.,
1997; Benyamini et al., 1999).
In light of the nature of our sample, our findings
should be viewed as exploratory and demanding
further investigation in larger and more hetero-
geneous samples. They underscore the importance
of studying the long-term effects of having had
cancer on not only on long-lasting changes in
quality of life or post-traumatic effects (Gotay and
Muraoka, 1998; Smith et al., 1999) or on specific
fears of recurrence (Kash et al., 1992), but also on
daily living with additional diseases. And, they
suggest that research should also focus on those
who were close to cancer patients at the time of
diagnosis and treatment. These close people were
not the focus of medical treatment or psycho-
social support at the time of the patient’s illness.
They were the healthy caregivers, whose distress at
Psycho-Oncology 12: 161–172 (2003)
170 Y. BENYAMINI ET AL.
the time of the illness was not as legitimate as the
patient’s, and probably did not receive much
attention at the time or later on. Since they did
not suffer the illness themselves, positive life
changes following the illness, that are often
reported by cancer survivors (Andrykowski et al.,
1993), are also less legitimate for them. Yet, our
findings suggest that the experience seems to have
long-lasting effects on these former caregivers that
should be further studied.
Several issues should be noted in such further
studies. First, the size of our sample did not permit
the separate study of VC who are blood relatives
of cancer patients and those who are not (mainly
spouses). Our VC group was comprised of about
half of each type of relation to the patient. These
two sub-samples are too small to analyze using
statistical tests. Descriptive data suggest that the
effects found for the VC group occur in both sub-
groups, but are stronger among the blood rela-
tives. The latter people share both the very
intimate encounter with a cancer patient, and the
personal increased risk following the knowledge
regarding family history of cancer. Inconsistent
findings regarding adherence to cancer screening
recommendations among high-risk people (those
with a family history), suggest that there may be a
curvilinear relationship between cancer worry and
disease detection behaviors (Decruyenaere et al.,
2000): moderate levels of cancer worry seem to
facilitate adherence (Diefenbach et al., 1999), while
high levels may undermine it (Lerman et al., 1993).
Our study suggests a possible underlying mechan-
ism that can partially explain the level of worry: it
is possible that the most intense fears, those that
lead to avoidance/repression, are more prevalent
among people who are both at high risk and have
been in very close touch with the cancer patient at
the time of the illness. The extent to which the high
risk plays a role in affecting future coping with
health threats, versus the impact of close contact
with a patient, remains to be studied.
Second, all the CS participants by definition
survived their cancer. In contrast, the long-term
impact of the VC experience may be dramatically
different for people who were close to a cancer
patient who died versus those whose relative did
not survive. Because we had incomplete data on
this issue and a group too small to split, this
important issue also remains to be investigated.
The trauma is clearly more profound for a person
who has cared for a loved one and lost him/her.
In addition, success versus failure in fighting the
Copyright # 2002 John Wiley & Sons, Ltd.
disease may affect the caregiver’s feelings of
control over the disease, that in turn may affect
their choice of active versus avoidant coping.
Women with benign breast disease who perceived
low control over breast cancer, reported minimal
worry as long as they had only few symptoms,
which may reflect a denial mechanism (Cunning-
ham et al., 1998), similar to our findings regarding
the VC group.
Third, our results may be specific to older CS
and VC. Younger people diagnosed with cancer,
or living with a cancer patient, may react
differently to having to live with the fear of cancer.
Since older adults are in general more accepting of
chronic illness, any research in this area should
also take into consideration the life stage of the
participants.
Fourth, some of the inconsistencies in the
findings reported in the literature regarding the
long-term impact of cancer, may be due to using
a ‘healthy’ control group as the standard for
comparison. Our findings suggest that the assump-
tion that this group is homogeneous regarding
cancer experience, may be unwarranted. The
specific composition of the healthy comparison
group may underlie some of the differences in the
findings.
Fifth, there are numerous other variables that
we have not been able to control for with a small
sample, such as the types of cancers CS or VC
close persons had and the time since diagnosis,
types and length of treatment, gender similarity
between VC and close person, and more. Since the
differences between the groups are evident even
with such variability within them (that could have
masked any effects), the effects seem to be robust,
but the conditions under which they are more
likely to occur should be further examined with
these additional variables in mind.
In sum, our findings, especially regarding the
VC group, are intriguing, and we hope they will
inspire other researchers to further study the issues
they raise. In addition to the implications and
directions for future research, there are some
practical implications of our findings. Regarding
CS, health care providers should be aware of these
people’s heightened vigilance and need for reas-
surance. Regarding the VC, providers of medical
services and of psycho-social services, should be
aware of the extent of trauma these people may be
experiencing, and of the importance of identifying
their needs and providing them with assistance in
coping with their own distress (Donnelly et al.,
Psycho-Oncology 12: 161–172 (2003)
 LIVING WITH THE WORRY OF CANCER
2000). Support at the time of the trauma may
assist in developing adaptive ways of coping. The
period of time in which they are still in touch with
the health care system may be the only time when
treatment or support could be offered to them,
since avoidant copers tend also to avoid psycho-
logical treatment (Andrykowski et al., 2000).
Messages intended to encourage these people to
engage in a healthier lifestyle and/or to take part in
screening examinations, should be sensitive to
their difficulty in handling the threat implied in
these messages.
ACKNOWLEDGEMENTS
This research was supported by Grant AG03501 from
the National Institute on Aging. We thank Bonnie
Pepper, Susan Brownlee and Frances Sisack for their
assistance on various aspects of the research reported in
this article.
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