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Fear of Cancer Among Women Undergoing Hysterectomy for Benign Conditions

From the Department of Epidemiology, Johns Hopkins University Bloomberg School of Public Health, Baltimore, Maryland (L.G.); and the Department of Gynecology & Obstetrics, Johns Hopkins School of Medicine, Baltimore, Maryland (L.A.H., K.H.K.).

Address correspondence and reprint requests to Lisa Gallicchio, PhD, The Johns Hopkins Bloomberg School of Public Health, Department of Epidemiology, 615 N. Wolfe Street, Room 6132, Baltimore, MD 21205. E-mail: lgallicc{at}jhsph.edu

	ABSTRACT

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Objective: Hysterectomy is a common surgical procedure among women, and the majority of hysterectomies are performed for benign conditions. This study examined fear of developing gynecologic cancer among women undergoing hysterectomy for benign conditions.

Methods: Participants were 1142 women undergoing hysterectomy for benign conditions who were enrolled in the Maryland Women’s Health Study. Each participant provided informed consent and completed a questionnaire that was used to obtain information on demographic characteristics, cancer fear, psychologic functioning, and quality of life.

Results: Almost 80% of the participants reported at least a little fear of developing gynecologic cancer if they chose not to undergo hysterectomy, and 29.0% reported "a lot" of fear of developing cancer if they chose not to undergo the surgery. The level of cancer fear was significantly higher among younger women, black women, women with less education, and women reporting a lower income. In addition, the level of fear of developing cancer was significantly and positively associated with anxiety and depression and was significantly and negatively associated with social functioning, physical functioning, and health perception.

Conclusions: These findings suggest that a high percentage of women undergoing hysterectomy for benign conditions, particularly those who are young, less educated, and black, fear that they will develop cancer if they choose not to undergo the surgery. Physicians should provide more information regarding actual gynecologic cancer risk to women contemplating hysterectomy for benign conditions so that women are able to make more informed decisions about undergoing the surgery.

Key Words: anxiety • cancer fear • hysterectomy • women’s health

Abbreviations: MWHS = Maryland Women’s Health Study; POMS = Profile of Mood States; MOS = Medical Outcome Study.

	INTRODUCTION

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Althoughhysterectomy is the second most frequently performed surgical procedure for women in the United States, the majority (approximately 90%) of hysterectomies are performed for benign conditions (1,2). The decision-making process for women contemplating an elective hysterectomy is complex, and several factors that play a role in a woman’s decision to undergo the surgery have been identified such as the effect of prehysterectomy symptoms on a woman’s quality of life (3). Published case reports suggest that fear of cancer may also influence a woman’s decision to undergo a hysterectomy (4,5); however, only one small cross-sectional study has examined cancer fear or worry among women undergoing an elective hysterectomy. In that study, which was conducted in London, Steptoe et al. (6) reported that 18 of 25 women (72%) undergoing hysterectomy for benign indications expressed concern about gynecologic cancer. Reporting concern about cancer was significantly and positively related to knowledge about gynecologic conditions but was not significantly associated with age, socioeconomic status, having previously experienced gynecologic surgery, or with knowing someone personally who had cancer (6).

Although fear of cancer among women undergoing a hysterectomy has not been explored in more detail in a larger, population-based study, several research studies have been published examining cancer fear or worry among women who have chosen to undergo a prophylactic mastectomy or oophorectomy. In general, the majority of studies on this subject have reported that women who choose to undergo a prophylactic mastectomy or oophorectomy have higher levels of cancer fear or worry than women who choose not to undergo the surgery (7–10). Furthermore, some studies indicate that cancer fear or worry is a stronger predictor of the choice to undergo a mastectomy or oophorectomy than actual risk of cancer (termed objective risk), occurrence of a breast cancer-related event in the past year, and number of first- and second-degree relatives with breast or ovarian cancer (8,10,11). Fear of cancer in these studies was found to be most strongly associated with perceived risk (8,10,11).

The findings from studies on cancer fear and women considering prophylactic mastectomy or oophorectomy suggest that, among certain women, fear of cancer may dominate the decision-making process with regard to elective surgery. It is logical, then, to reason that the decision to undergo an elective hysterectomy among certain groups of women may also be related to fear of cancer. Even such benign gynecologic conditions as uterine fibroids, which are rarely cancerous, are often referred to as tumors, a term which may lead some women to believe they have cancer and influence their decision to undergo a hysterectomy.

As part of the preoperative interview of a large-scale study of women having hysterectomy for benign indications such as uterine fibroids, menstrual disorders, and endometriosis, women were asked if they were worried that they could develop cancer of the ovaries, uterus, or cervix if they did not have the hysterectomy. This provided an unusual opportunity to investigate fear of developing cancer among women undergoing elective hysterectomy, to determine what characteristics are related to the fear of cancer, and, furthermore, to assess whether fear of cancer is associated with mental well-being, physical and social functioning, and self-perceptions of health.

	METHODS

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Study Sample
This cross-sectional analysis was conducted using data from the Maryland Women’s Health Study (MWHS), a large prospective study designed to measure the outcomes and effectiveness of hysterectomy for benign conditions. Methods for MWHS have been described in detail elsewhere (12). Briefly, women were eligible for enrollment into MWHS if they were aged 18 years or older and scheduled for a hysterectomy for noncancerous conditions between February 1992 and October 1993. Of the eligible women contacted at the 28 study hospitals in the state of Maryland, 81% (n = 1299) agreed to participate and were enrolled into MWHS. Enrolled women were administered a questionnaire in person by a trained interviewer before hysterectomy and then at 6, 12, and 24 months after hysterectomy. Telephone interviews were conducted at 3 and 18 months posthysterectomy. In addition, medical records were abstracted and pathology reports were obtained for 99.2% of the participants. Women whose medical records and pathology reports were not extracted (n = 11) were not included in this analysis.

Women enrolled in MWHS with a presurgical diagnosis of cancer, endometrial hyperplasia, or cervical dysplasia were excluded from these analyses. Data on these preexisting cancerous or precancerous conditions were obtained through medical chart review and questionnaire data. Women were also excluded from these analyses if they had a postsurgical diagnosis of cancer; this information was obtained from the pathology report obtained after hysterectomy. Of the women enrolled in MWHS, 129 were excluded because of preexisting conditions and 13 women were excluded because of posthysterectomy cancer diagnoses (Table 1). In addition, four women were excluded from these analyses because their response to the question used to assess the participant’s level of fear of cancer was "don’t know" or "refused." Thus, 1142 women were included in these analyses.

Variables
Each participant’s fear of developing cancer if she chose not to undergo a hysterectomy was assessed using the question: "To what extent, if at all, are you worried that you could develop cancer of the ovaries, uterus, or cervix, if you did not have a hysterectomy?" which was included on the prehysterectomy questionnaire. Participants were asked to choose from one of the following responses to describe their level of fear: "a lot," "some," "a little," and "not at all." "Refused" and "don’t know" were also offered as responses, but, as reported previously, women were excluded from this analysis (n = 4) if they chose either of these responses. Data on age, race, education, and income were also obtained using the prehysterectomy questionnaire and based on self-report.

Participants’ psychologic function before hysterectomy was assessed using the Profile of Mood States (POMS), a well-known quality-of-life measure comprised of 65 adjective rating scales that assess mood states (13). For this study, data on the depression–dejection and tension–anxiety mood states were obtained and analyzed for each participant. The minimum possible score (absence of mood disorder) for both the depression–dejection and tension–anxiety scales is zero and the maximum possible scores (maximal mood disorder) are 60 for the depression–dejection scale and 36 for the tension–anxiety scale. Several other quality-of-life measures were assessed using the physical functioning, social functioning, and health perception scales from the Medical Outcome Study Short-Form General Health Survey (MOS (14)), a well-validated and reliable instrument used frequently in outcome studies. The ranges of scores of these MOS scales are as follows: physical functioning, 6 (maximum impairment) to 18 (no impairment); social functioning, 1 (maximum impairment) to 6 (no impairment); and health perception, 5 (maximum impairment) to 25 (no impairment).

Statistical Analyses
Chi-square tests were performed to evaluate the associations between each of the demographic and clinical variables and the four-category fear of cancer variable. In addition, an ordinal logistic regression analysis was used to determine whether age, education, and race were associated with the four-category fear of cancer variable independent of the other characteristics. Because known risk factors for gynecologic cancer could also be associated with cancer fear and could explain any associations between age, education, and race and the cancer fear variable, we also added the following known risk factors to the logistic regression model: unopposed estrogen use, exogenous hormone use, obesity, parity, diabetes, hypertension, endometrial hyperplasia, and family history of endometrial cancer. The odds ratios and levels of significance for the age, education, and race variables were similar in the regression models including and not including these other known risk factor variables. In all ordinal logistic regression models examined, the proportional odds assumption was met; this was tested using the Score Test for the Proportional Odds Assumption.

In addition to assessing fear of cancer as a dependent variable, we also examined fear of cancer as a predictor of psychiatric, social, and physical functioning. In this analysis, fear of cancer was considered the independent variable, whereas the MOS scale scores and the POMS anxiety–tension and depression–dejection scores were considered the dependent variables. Univariate analysis of variance tests were used to examine the associations of the four-category fear of cancer variable with the MOS scale scores and the POMS anxiety–tension and depression–dejection scores. Furthermore, linear regression models were used to examine the associations between fear of cancer and the MOS scale scores and the POMS anxiety–tension and depression–dejection scores controlling for age, education, race, and income.

P values were considered statistically significant at < .05. All statistical analyses were performed using SAS, release 8.1 (SAS Institute, Inc., Cary, NC).

	RESULTS

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Characteristics of the sample are shown in Table 2. In general, the sample consisted of younger women (age <50 years) with at least a high school or technical degree. Almost 65% of the participants were white and the majority had an income of more than $25,000. Approximately 60% of the women had a presurgical diagnosis of uterine fibroids; over 50% had at least one ovary removed during surgery.

Approximately 78% of the participants had at least "a little" fear of developing cancer if they chose not to have a hysterectomy (Table 2). Twenty-nine percent of the participants reported having "a lot" of fear of developing cancer if they chose not to have a hysterectomy. Compared with their counterparts, younger women, black women, women with no high school degree, and women having an income of $25,000 or less reported more fear of developing cancer if they chose not to have a hysterectomy. The logistic regression analysis showed that race, education, and age were each independently associated with fear of cancer.

In addition, ovary removal was significantly and positively associated with the fear of developing cancer. Participants with a presurgical diagnosis of uterine prolapse reported less fear of developing cancer if they chose not to have a hysterectomy. In contrast, the highest percentage of women who reported having "a lot" of fear of developing cancer was among those with a presurgical diagnosis of an ovarian cyst.

The level of fear of developing cancer among women if they chose not to have a hysterectomy was significantly and positively associated with POMS anxiety–tension scores and depression–dejection scores (Table 3). Participants who reported "a lot" of fear of developing cancer had mean anxiety–tension and depression–dejection scores of 15.9 (standard deviation 8.1) and 13.9 (12.0), respectively. In contrast, participants who reported no fear of developing cancer had mean anxiety–tension and depression–dejection scores of 10.5 (7.5) and 7.8 (10.0), respectively. The level of fear of developing cancer was also significantly associated with MOS social functioning, physical functioning, and health perception scores; participants who reported a greater amount of fear of developing cancer had significantly lower physical functioning, social functioning, and health perception scores. The linear regression analyses showed fear of cancer was associated with psychiatric, social functioning, physical functioning, and health perception scores independent of age, race, education, and income.

	DISCUSSION

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Fear of cancer among women who are at high risk for gynecologic cancer may be a reasonable emotion when deciding to undergo hysterectomy. Numerous studies have highlighted the high prevalence of cancer fear among women at high risk for breast or ovarian cancer who are deciding whether to undergo prophylactic mastectomy or oophorectomy (10). Few studies, however, have examined fear of cancer among women at low risk for cancer who are undergoing an elective procedure such as hysterectomy. In this study, we examined fear among participants who were undergoing hysterectomy for benign gynecologic disorders and, thus, were not at high risk for gynecologic cancer. Despite the low cancer-risk attribute of the sample, the prevalence of cancer fear was similar to that found among high-risk women undergoing prophylactic surgery; almost 80% of the participants in this study reported at least a little fear of developing gynecologic cancer if they chose not to have a hysterectomy. Our results are consistent with Steptoe et al. (6), who reported that 72% of women undergoing gynecologic surgery for benign conditions (chiefly hysterectomy) expressed concern about developing gynecologic cancer.

In addition to a high prevalence of cancer fear within the sample, we found that a surprisingly high percentage of women (29.0%) reported "a lot" of fear of developing cancer if they chose not to undergo the surgery. The level of cancer fear was significantly higher among women of younger age, lesser education, and lower annual income. The association of these factors with cancer fear is not the result of differences in known risk factors for gynecologic cancer among the age, education, and income groups, as we adjusted for these known risk factors in the regression analyses. Instead, these factors are likely associated with limited knowledge regarding medical conditions (6,15). Our findings are consistent with surveys of the general population, which have found that fear of cancer is related to age, education, and income such that individuals who are younger, less educated, and have a lower income have more fear of cancer (15). However, Steptoe et al. (6) found that, among women undergoing any gynecologic surgery, concern of cancer was not significantly associated with age or socioeconomic status. The ability of the Steptoe et al. (6) analysis to detect significant associations may have been limited by the small number of participants (n = 54).

The level of cancer fear experienced among participants was also strongly associated with presurgical diagnosis and ovary removal. One possible explanation for this association is that certain diagnoses such as uterine fibroids, in which a high percentage of participants reported experiencing "a lot" of cancer fear, may be more likely to be referred to as "tumors" by physicians or to be construed by patients to be cancerous tumors, especially when the ovary is removed. This theory is supported by the findings from Steptoe et al. (6), which reported that the overwhelming majority of women who experienced concern about developing cancer believed that their presenting gynecologic problems were caused by cancer. Another explanation may be that cancer fear is greater among women diagnosed with a condition accompanied by symptoms of a nonspecific nature such as menstrual disorders and endometriosis. Steptoe et al. (6) reported that cancer worry was greater among women experiencing general pain, discomfort, or menstrual problems, whereas cancer worry was less among women whose symptoms included incontinence or uterine prolapse.

It appeared in this study that women with higher levels of cancer fear also had higher levels of depression and anxiety as well as lower levels of social and physical functioning. The correlation of these factors is interesting and was expected because, in general, previous studies have reported significant associations between fear of cancer and mental, social, and physical functioning (16). Lalinec-Michaud et al. (16) reported that a significantly greater percentage of women who were diagnosed with depression before hysterectomy reported fear of cancer than those who were not diagnosed with depression. Similarly, Steptoe et al. (6) reported that, although concern about cancer among women undergoing hysterectomy was not associated with anxiety, the intensity of concern was significantly associated with psychiatric functioning, as assessed using the General Health Questionnaire (GHQ), and the level of trait anxiety. These results suggest that cancer fear may contribute to psychiatric, social, and even physical functioning among women with benign gynecologic disorders.

Two limitations of this study should be noted in interpreting the results. First, this study was limited to women undergoing hysterectomy; thus, we were not able to assess whether and to what extent fear of cancer influenced the decision to undergo hysterectomy. Only a prospective study containing a "control group" (i.e., women who have decided not to undergo hysterectomy) could determine whether fear of cancer plays a significant role in the choice to have surgery. It may be that a certain amount of fear is normative and that fear of cancer is unrelated to the decision to undergo hysterectomy. However, we believe this is unlikely given the level of fear observed in this study. Few studies have investigated cancer fear among women choosing to undergo hysterectomy, and the prevalence and levels of cancer fear reported in this study highlight the need for increased physician–patient communication regarding actual cancer risk. Second, we did not assess knowledge of cancer and we were not able to examine the nature of communication between the women and their physicians because this information was not available in the medical records. Although we hypothesize that the presence and level of cancer fear may be related to a lack of patient knowledge about cancer risk and, perhaps, a lack of appropriate physician–patient communication concerning this issue, we did not have the ability to examine this hypothesis using the data collected in this study.

Hysterectomy is one of the most common surgical procedures among women in the United States. The findings from this study raise the question as to whether certain women undergo hysterectomy because they fear they will develop gynecologic cancer if they do not undergo the procedure. If fear of cancer is, in fact, a significant factor in the decision-making process of some women contemplating hysterectomy, particularly among less educated women, public health interventions to reduce fear should be implemented to eliminate hysterectomies carried out because of fear. These interventions should, at the very least, include increased patient education regarding gynecologic cancer risk for women contemplating hysterectomy for benign conditions. Discussing actual gynecologic cancer risk and providing patients with more information regarding their medical condition could perhaps alleviate cancer fears and anxieties regarding surgery. It would also improve the informed consent process, because women would have a better understanding of the decisions they are making. Ultimately, by reducing the amount of fear and anxiety and improving the informed consent process, women would then be able to make a more rational decision regarding hysterectomy.

	NOTES

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This study was supported by grant HS06885 from the Agency for Healthcare Policy and Research.

DOI:10.1097/01.psy.0000160472.69303.56

	REFERENCES

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This Article Abstract Full Text (PDF) Alert me when this article is cited Alert me if a correction is posted Services Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Download to citation manager Request Permissions Citing Articles Citing Articles via Google Scholar Google Scholar Articles by Gallicchio, L. Articles by Kjerulff, K. H. Search for Related Content PubMed PubMed Citation Articles by Gallicchio, L. Articles by Kjerulff, K. H. Related Collections Anxiety Sexual Medicine: Female Cancer