Psychological Factors in the Choice of Treatment for Breast Cancer

Psychological Factors in the Choice of Treatment for Breast Cancer J. MARGOLIS, M.D., ROBERT L. GOODMAN, M.D. ALAN RUBIN, M.D., THOMAS F. PAJAC. PH.D.

GERALD

For several years women with an early diagnosis of breast cancer have been able to choose between two equally effective treatments: modified radical mastectomy and the breast-conserving treatment of lumpectomy plus radiation therapy. This study investigated the psychological factors that become involved when a woman chooses between treatments. Many more anticipatory concerns about body image. disjigurement,jemininity. and the ability (or inability) to handle emotionally a mastectomy were expressed by lumpectomylradiation therapy patients than by mastectomy patients. Those lumpectomyradiation therapy patients who chose the treatment against medical advice were also found to be more concerned than the others about treatment effects on sexuality.

omen with a diagnosis of breast cancer in the early stages (clinical stages lor II) have a choice of two equally effective treatments: the standard treatment of modified radical mastectomy and the newer treatment of lumpectomy plus radiation therapy. The mastectomy causes an obvious disfigurement whereas the lumpectomy-radiation therapy alternative. especially as it is done today with newer techniques. is a truly breast-conserving treatment. I- 1o Between physicians and surgeons who treat this disease. a debate has ensued as to the importance of breast conservation to women with this diagnosis. Though some recent articles 11-14 have compared some of the psychological effects (i.e.• outcome) of mastectomy versus lumpectomy-radiation

W

Received December 28.1987; accepted May 16. 1988. From the Departments of Psychiatry. Radiation Therapy. and Obstetrics and Gynecology. University of Pennsylvania School of Medicine. Philadelphia. Pennsylvania; and the American College of Radiology. Address reprint requests to Dr. Margolis. Department of Psychiatry. University of Pennsylvania School of Medicine. Philadelphia. PA 19104. Copyright e 1989 The Academy of Psychosomatic Medicine.

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therapy. psychological factors influencing choice of treatment by patients have not been reported. We performed a pilot study 15 of women who had chosen lumpectomy-radiation therapy and found that. for most of these women. concerns about disfigurement and being unable to adjust emotionally to the loss of a breast were major factors in their choice. However. patients who chose mastectomy were not studied. so that no comparisons could be made. To better understand the psychological factors involved in which treatment is chosen. interviews were conducted with 70 women. 52 of whom were one-year or more postmastectomy or postlumpectomy-radiation therapy and 18 of whom were normal women (no cancer diagnosis) who were aware of being at greater than average risk because of family history to develop breast cancer. METHODS The patients were divided into four groups: Group 1 (n=20) consisted of those lumpectomyradiation therapy patients who were advised by their physicians to have mastectomy but who PSYCHOSOMATICS

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went against this advice in seeking out and choosing lumpectomy-radiation therapy; Group 2 (n= 12) consisted of those lumpectomy-radiation therapy patients whose physicians either advised them to have lumpectomy-radiation therapy as the treatment of choice or presented it as an option equal to mastectomy in its curative effects; Group 3 (n=22) included those patients treated by mastectomy; and Group 4 (n=18) was the control group, women with no cancer diagnosis, but who were aware of being at greater than average risk to develop breast cancer because of family history. Patients were interviewed individually in a standard manner by an experienced psychiatrist. A detailed set of questions was filled out by the interviewer immediately following the interview. Patient selection in the study was a consecutive series. All lumpectomy-radiation therapy patients treated at the Hospital of the University of Pennsylvania were asked to volunteer to participate. The patients at greater-than-average risk and the mastectomy patients also represented a consecutive series of patients of a private gynecologist; all of his patients were asked to volunteer to participate. All patients were, therefore, self-selected and represented people who were highly motivated to participate and cooperate with the study. Those not wishing to participate refused: no pressure was brought to bear on them and no follow-up information was collected about them. No randomization ofpatients into the study or into the four groups took place. All cancer patients were one-year or more posttreatment. This method of selection was used for several reasons. While there are some advantages to a prospective study, a number of clinicians believed that attempting to study the women in the short, stressful period of time between diagnosis and beginning treatment would make it difficult to get patients to volunteer. Those who did volunteer would likely find it difficult to cooperate fully. Thus, we decided to interview only women at least one-year posttreatment, to give them time to adjust to the immediate stress and upset of the diagnosis and treatment and to reflect now on what was really going on in their minds at that time. Data obtained from the control group VOLUME 30 • NUMBER 2 • SPRING 1989

(Group 4) provided information about what women who think a great deal about breast cancer and its treatments would choose if a diagnosis were made and how this compares with the retrospective treatment groups. This was one reason this group was studied: they were women who worried about developing breast cancer and its treatment because they considered themselves to be at above average risk. No follow-up of this group has as yet been done to determine if any subsequently developed breast cancer and if so what treatment they chose. The variables studied were chosen from a review of the literature that identified pertinent questions.2.3,S·7.9.lo.12.16 Other questions were suggested by clinicians experienced in treating this disease. A limited, unpublished institutional pilot study of 10 breast cancer patients was then done to evaluate these questions and to determine and evaluate additional questions. A search for an instrument to gather data was then undertaken; none was found to suit our purposes, and we developed our own. In general we used a 5-answer graded scheme: I=no effect, 2=slight effect, 3=moderate effect, 4=large effect, 5=devastating effect. A clear and accurate representation of the patient's response was thereby obtained without resorting to excessive subdivisions. Fifteen dependent variables were studied: I) body image, 2) feeling deformed, 3) feeling mutilated, 4) concerns about femininity, 5) concerns about ability to handle emotionally a mastectomy, 6) sexual desirability, 7) fears of death, 8) fears of breast loss, 9) choice made for self or other, 10) history of psychological trauma, II) defense mechanism of isolation ofaffect, 12) frequency of coitus, 13) enjoyment of coitus, 14) psychiatric diagnosis, and 15) treatment choice today. Because ofthe nature ofthe questions asked, blindness to the treatment choice by the interviewer was not possible. Instead of asking patients to hide aspects of their history, every attempt was made to encourage them to reveal themselves and to be completely frank. There was no bias on the part of the interviewer, who had no motive to prefer either treatment and who was not himself involved in the treatment process. The other two physician coauthors repre193

Psychological Factors and Cancer Treatments

TABLEl. Percent of patients who considered fears about adverse effeds on body Image as a factor In treatment choke Group 1 Body image 100%

Group 2 Group 3 Group 4 64%

19%

67%

95

67

14

56

90

67

14

50

90

58

14

44

Handle emotionally 55

17

0

39

(p=.OOO I) Defonned

(p=.OOO I) Mutilated

(p=.OOO3) Femininity

(p=.OOO7)

(p=.OOO6) p<.001 very significant Group I = chose lurnpectomy-radiation against physician's advice. Group 2 = chose I-r when physician presented it as equal to mastectomy. Group 3 treated with mastectomy. Group 4 =controls (at risk of developing breast cancer).

=

sent the different points of view regarding mastectomy and lumpectomy-radiation therapy. One is a surgeon who does mastectomies and considers it to be the bener treatment; the other is a radiation therapist who considers lumpectomyradiation therapy to be the treatment of choice in early breast cancer when the patient so chooses. The data were analyzed using the Pearson chi square. Because there were many comparisons to be made, the following definitions of statistical significance were used: (a) very significant, p<.OO I; (b) significant .00I
RESULTS The four groups of patients were not statistically different with respect to educational level, marital status, socioeconomic status, job status, or medical and social sophistication. The mean ages were 47 years for Group 1,54 years for Group 2, 48 years for Group 3, and 43 years for Group 4. Mean time between the end of treatment and the interview for the three posnreatment groups was 39 months (Group I), 35 months (Group 2), and 49 months (Group 3). The psychological factors affecting choice

of treatment included concerns about body image, feeling deformed and mutilated, effects on femininity, the ability to handle emotionally a mastectomy, whether the choice was made for oneself or for someone else (e.g., husband), the effects on feelings of sexual desirability, effects on sexuality itself, fears of death and dying, whether they would delay treatment because of fear of breast loss, history of psychological trauma, the use of isolation of affect as a defense mechanism, and which treatment the patient would choose today. Percentages given in parentheses are for greater-than-average concerns about the factor mentioned. For brevity and readability, data regarding average or less than average are not given but were included in the analysis for statistical significance. Concerns about adverse effects on body image as a factor affecting treatment choice (Table I) were greatest in Group I patients (100%), less in Groups 2 (64%) and 4 (67%), and least in Group 3 (19%). The distinction between the groups was statistically very significant (probability=O.OOOI using the Pearson chi square). The data differ only slightly for the related concern of feeling deformed and significance (p=O.OOOI) was found here also. The similar category of concerns about feeling mutilated was very significant at the p=O.OOO3level. Concerns about an adverse effect on feelings of femininity distinguished Group I (90%) as being greater than Groups 2 (58%) and 4 (44%) and much larger than Group 3 (14%) at the very significant level (p=O.OOO7). Anxiety over the ability or inability to handle mastectomy emotionally was not anticipated as a problem by any mastectomy patients (Group 3); this was less true for the Group 2 patients (17%), even less for Group 4, and was highly anticipated as a problem by over half of Group I patients (55%). The distinction between the groups was statistically very significant at the p=O.OOO6 level. Questionable differences between the groups were found in investigating concerns about the effects of mastectomy on feeling sexually desirable. This factor was of greatest concern in Group I patients (40%), less in Groups 2 (33%) and 4 (28%), and least in group 3 (10%), but only PSYCHOSOMATICS

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at the p=O.l4 level, which does not meet our criteria even for the suggested level. Similarly the category of concern about treatment effects on sexuality itself was also questionably different among the groups: Group 1 (45%), Group 2 (17%), Group 4 (28%), and Group 3 (10%) at the p=O.10 level. Interestingly if we compare all the other patients against Group I patients, this was a more important choice factor for them than for the others at the suggestive level (p=.04). Fears of death (Table 2) played less of a role in treatmentchoiceinGroups4(6%)and I (l3%),more in Group 2 (33%), and most in Group 3 (55%), at p=.002. Conversely fears of breast loss to the point of delay of treatment played a role in 50% of Group 1 patients, would playa role to the point of delay if necessary in 29% of Group 4, did not playa role in Group 2, and affected only 5% of Group 3. The majority of women in each of the four groups made the choice of treatment entirely or primarily because of concerns about treatment effects on themselves as opposed to concerns about what others would think of them (e.g., husbands). However, this was most true of Group 1 patients (100%), less for Groups 4 (71 %) and 2 (67%), and least for Group 3 (62%); the distinction between the groups was suggestive at the p=O.02 level. Group 3 (mastectomy patients) made the choice out of concern for what their husbands would want for them rather than because of what they wanted for themselves much more often than did Group I and more often than Groups 4 and 2. Differences in the degree of psychological and social trauma (by history) during adult life was greatest for Group I (75%), much less for Group 3 (46%), and least for Groups 2 and 4 (33%). This was suggestive at the p=O.04 level. Regarding intrapsychic processes, statistical difference at the significant level (p=O.OO9) was found in the groups in terms of the extent of their reliance on isolation of affect as a defense mechanism. This was greatest in Group 3 (mastectomy) patients (50%),less in Group 2 (27%), still less in group 1(l5%),and least for Group 4 (6%). No statistically significant or suggestive differences between groups were found for pretreatment frequency or enjoyment of sexual relations. VOLUME 30 • NUMBER 2 • SPRING 1989

TABLE 2. Percent of patients who considered fears of death and breast loss as factors In treatment choice Group 1 Fear death

Group 2 Group 3 Group 4

13%

33%

55%

0

5

6%

(p=.002)

Fear of breast loss leading to delay 50 (p=.002)

29

.001
TABLE 3. Percent of patients who would choose lumpectomy-radiatlon treatment today Group 1 ChooseXRT 100%

Group2 Group3 Group4 100%

55%

72%

45

72

(p=.002

significant) Reason for treatment choice avoid 100 75 disfigurement 0

0

32

17

follow advice 0

25

23

II

safer

Nor were any differences found regarding the presence, absence, or severity of psychiatric illness. Interestingly, if making a choice today (Table 3) all ofthe lumpectomy-radiation therapy patients (Groups I and 2) would choose it again over mastectomy, whereas 55% of the mastectomy patients (Group 3) would now choose lumpectomy-radiation therapy at the significant level of p=O.002; this choice was primarily motivated by a desire to avoid disfigurement. Of the motives for treatment choice today, 100% of Group I patients would make this choice to avoid disfigurement. 75% of Group 2 to avoid disfigurement (25% of Group 2 would do whatever their surgeon advised), and 45% of Group 3 (mastectomy) to avoid disfigurement (32% of Group 3 would choose mastectomy because they believe it to be safer and 23% would do whatever their surgeon advised), 72% ofGroup 4 normals would choose radiation therapy to avoid disfigurement (17% would choose mastectomy because they believe it safer and II % would follow their surgeon's advice). 195

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DISCUSSION Our data suggest that the most important psychological factors affecting a woman's choice of lumpectomy-radiation therapy or mastectomy is the degree of anticipatory concern over adverse effects on her body image. disfigurement. and whether or not it would represent an insult to her sense of femininity. Those women choosing the newer breast-conserving alternative against advice from their physician clearly were much more concerned about this than those choosing the standard treatment, mastectomy, and they were afraid that they would not be able to handle emotionally the psychological difficulties they anticipated the mastectomy would cause. Less fear of death and more fear of breast loss also appeared to be important in choosing radiation therapy. both in cancer patients and in women who are at increased risk to develop the disease. Of possible importance was the degree of concern about being able to feel sexually desirable and concern about adverse effects on their sexual lives. Mastectomy patients may not anticipate as much problem in this area and tended to more often feel that they could readily adjust their sexual lives after the loss of a breast. The four groups of women. regardless of which treatment they chose. made the choice out of anticipatory concern for their own feeling about its psychological effects (or lack thereof). rather than out of concern for its effects on other people important to them (e.g.• husbands, lovers. children). This was much more true for those women who went out of their way to find the breast-conserving treatment despite medical advice to have a mastectomy than it was of the others. This suggests that internal personal factors are much more important motivating factors in going against medical advice than pressures perceived as being external. One might also suspect that these women might generally be more aggressive and determined than other women. but while this seems to be true in a few cases, in general our data did not support this conclusion. What does appear to be true is that these women are much more likely to have had a history of psychological trauma in their lives than the 196

women in the three other groups. Speculation about the meaning of this finding would lead us to suspect that these women are more concerned about protecting themselves from additional psychological trauma when at all possible. This could also be consistent with our finding that they have a greater concern about being able to handle emotionally the trauma of mastectomy. They tend to be more like the noncancer group in being freer in their expression of affect than the other patients (they use the defense mechanism isolation of affect less) and were more aware of being overtly upset at the prospect of losing a breast. They were not, however. psychiatrically healthier or sicker than their counterparts at the time of interview (one year or more posttreatment). In addition. because this is a retrospective study. our finding regarding the defense mechanism isolation of affect may also have to do with the effect of treatment. i.e., mastectomy patients may need to defend more against unpleasant affects resulting from their feelings about breast loss. This would not. however. explain the differences between patients choosing lumpectomy-radiation therapy against advice and those advised to have lumpectomy-radiation therapy since the breast conserving treatment was the same in both cases. Here our suggestion ofa pretreatment psychological difference would seem to hold and to indicate that those choosing breast conservation against advice are more emotionally expressive. In making a choice today. all of the lumpectomy-radiation therapy patients indicated that they would choose the same treatment. whereas most (55%) of the mastectomy patients would now switch. largely due to a posttreatment realization ofgreater personal psychological difficulties than they had expected from the resulting disfigurement. Most normals would also choose radiation therapy. It seems reasonable to conclude that all women with the diagnosis of early breast cancer should be given an educated choice about the availability of the two treatments to avoid unnecessary posttreatment regrets. This study was carried out at the Department ofRadiation Therapy. Hospital ofthe University ofPennsylvania. Philadelphia. Pennsylvania. PSYCHOSOMATICS

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