GYNECOLOGIC
ONCOLOGY
3, 325-334
Psychosocial
(1975)
Adjustment
to Pelvic
Exenteration
G. MICHAEL DEMPSEY, M.D., HERBERT J. BUCHSBAUM, M.D.,’ AND JAMES MORRISON, M.D. Departments
of Psychiatry and Obstetrics and Gynecology, University of Iowa College of Medicine, Iowa City, Iowa
Received
August 19, 1975
A structured interview was used in 16 patients who underwent pelvic exenteration for gynecologic cancer to determine the factors that influenced patients’ acceptance of the procedure and their physical, mental, and social recovery. Patients were interviewed preand postoperatively, with the longest follow-up being 44 months. Not only does the surgery offer a significantly improved prognosis, but the quality of this life is very satisfactory, with only sexual function compromised.
Pelvic exenteration is finding greater application in the treatment of gynecologic cancer. While considerable attention has been directed to the technical aspects of the procedure, few data are available concerning the psychological and social stresses that patients experience and their methods of dealing with them. This study was designed to assess the factors that influence patients’ acceptance of the procedure and their physical, mental, social, and sexual recovery. METHODS
AND
MATERIALS
The structured interview was designed to evaluate the factors in patient acceptance of the operative procedure and the methods for achieving medical, social, occupational, and sexual adjustment. The interview consisted of 75 items, including simple demographic questions such as age and progressing to more complex categories relating to the present illness and mental status. A social and sexual history was also obtained. Brief personal and family histories of psychiatric illness and cancer were recorded. A structured interview of 75 items was administered preoperatively to 23 consecutive patients undergoing celiotomy for possible pelvic exenteration. Three of the patients had no recurrent cancer, and four were found to have inoperable disease. These seven patients were excluded from this study. Sixteen patients underwent pelvic exenteration (11 total and five anterior) and constitute the study group. In addition to the pelvic exenteration, two patients required radical vulvectomy and one required a symphysiectomy as part of the definitive treatment. Two patients who had vulvectomy also had bilateral groin dissection following the exenteration and vulvectomy to complete the therapy (Table 1). Three paI Send reprint requests to Herbert J. Buchsbaum, M.D., Department ogy, University of Iowa Hospitals, Iowa City, Iowa 52242. 325 Copyright All rights
@ 1975 by Academic Press. Inc. of reproduction in any form reserved
of Obstetrics
and Gynecol-
326
DEMPSEY, BUCHSBAUM
AND MORRISON
TABLE 1 PELVIC EXENTERATION-PREVIOUS HISTORY
Number
Patient
Age
Previous treatment
Interval W
1
RB
54
Radiation therapy
1.0
2
LC
45
Radiation therapy
9
3
cc
53
Radiation therapy
10
4
MIC
60
Radiation therapy
17
5
MAC
56
None
6
HC
44
7
ME
46
Total hysterectomy Total hysterectomy
8
PE
53
None
9
LH
52
Radiation therapy
25
10
ML
SO
Radiation therapy
16
11
MOL
40
Radiation therapy
I .2
12
wo
35
Radiation therapy
1.O
13
DS
47
Radiation therapy
0.7
14
LS
47
Radiation therapy
1.0
15
MW
47
None
-
16
DW
58
Radiation therapy
6
11 0.5
-
Indication Recurrent cervical carcinoma Recurrent cervical carcinoma Recurrent cervical carcinoma Recurrent cervical carcinoma Vulvovaginal carcinoma Vaginal carcinoma Persistent cervical carcinoma Vulvovaginal carcinoma Recurrent cervical carcinoma Recurrent cervical carcinoma Recurrent cervical carcinoma Recurrent cervical carcinoma Recurrent cervical carcinoma Recurrent cervical carcinoma Cervical carcinoma Stage IVA Recurrent cervical carcinoma
Type of exenteration Total Total Anterior Total with symphysectomy Anterior with vulvectomy and groin dissection Anterior Anterior Total with vuivectomy and groin dissection Total Anterior Total Total Total Anterior Total Total
ADJUSTMENT
TO EXENTERATION
327
tients required additional surgery for malfunction of the urinary conduit, one of whom developed a small bowel fistula. Another patient had a colostomy following an anterior exenteration. The 16 patients who underwent pelvic exenteration were interviewed preoperatively and again during the early postoperative period while still convalescing in the hospital and were then followed at regular intervals when they returned for surgical follow-up visits. With the exception of one patient who died 4 months postoperatively of a pulmonary embolus, all patients were interviewed at least twice postoperatively, and many had four or more interviews. During the follow-up, good rapport was developed with the patients, and all were cooperative in answering questions for this study. Characteristics of the patient population. All patients were Caucasian. The average age at the time of initial interview was 50.5 yr. Three patients had no prior cancer treatment. Prior treatment for the other 13 patients and the indications for exenteration are shown in Table 1. The average length of schooling was 10.8 yr; 10 patients completed high school. Thirteen patients were Protestant, two were Catholic, and one had no formal religion. Six of the patients attended church regularly, three never attended church, and three attended seldom. Seven patients were from small towns (population under 50, 000), and nine were from larger towns (over 200, 000 population). All but two were born and raised on farms or in small towns. Thirteen of the patients grew up in intact homes. Two grew up in homes broken by divorce, one patient’s father died when she was six, and one patient said that her parents were unhappily married. None of the patients volunteered that she was a behavior problem at home or at school. Typical childhood discipline was strict but physically nonpunitive. The patients were generally raised in middle-class rural settings and resided in small to medium sized Midwestern towns. The interval from the onset of symptoms until the time of diagnosis ranged from 0 in the asymptomatic patients to 1 yr. The neoplasia for which exenteration was done was detected at routine pelvic examination in five women. Two women had 1 yr of vaginal bleeding and foul discharge before seeking medical assistance. The average delay for the group was almost 2 months. RESULTS Preoperative reaction. The patients had two baisc emotional reactions when told they had cancer: shock and indifference. Those that were being told for the first time that they had cancer tended to use the word “shock” to describe their feelings. By this they meant that they instantly had thoughts of death. Six patients specifically used the words “shocked” or “stunned” to describe their initial reaction; two characterized their reaction as “fearful.” Most of the patients previously treated for cancer reacted with equanimity. Two denied strong feelings, stating that they had assumed the worst and had already handled their feelings on the matter. A common attitude was that they were unlucky to have such a serious illness, but given a chance, the doctor would take care of it. None of
328
DEMPSEY,
BUCHSBAUM
AND
MORRISON
the patients gave the impression that she regarded cancer as different from other serious illnesses, and none reported a prior carcinophobia. Husbands’ reaction to diagnosis. When patients were asked about their husbands’ reaction to the diagnosis, the usual response was “He reacted about like I did.” All the married women spontaneously mentioned that their families in general, and their husbands in particular, had been of great help during their illness. Acceptance ofsurgery. Ten of the patients said that they had never considered refusing consent for exenteration because they believed the procedure offered them their only chance for cure. Six patients admitted to transitory thoughts of refusing surgery. A common reason given by these patients for finally consenting to the procedure was their desire to see their family grow. Most often this involved children or grandchildren. Two patients were motivated by chronic pelvic pain, which they thought would be relieved by the operative procedure. Mood and method of coping prior to surgery. Ten of the patients reported significant feelings of depression preoperatively, and two admitted fleeting thoughts of suicide. All of the patients were needful of their families and spent increased time with them prior to surgery. Family ties were a conspicuous factor in helping the patient in the preoperative period. Several patients specifically mentioned prayer as a method of coping with their apprehensions regarding the prospective surgery. Two patients reported marked anxiety preoperatively, and one said that she hated the doctor who told her she needed exenteration. Short-term postoperative reactions. Many patients were totally amnestic for their early postoperative experience. They became fully aware of their surroundings 2 or 3 days postoperatively. During the immediate postoperative period, patients complained of fatigue, irritation due to the nasointestinal tube, insomnia, and pain, in that order. All patients but one complained of fatigue. Insomnia was common but was not directly related to pain. Some women with little pain had severe insomnia; some with moderately severe pain slept well with analgesics. Low back and hip pain were mentioned by four patients in the acute postoperative period, which probably represented musculoskeletal reaction to the stress of lying on the operative table, part of the time in lithotomy position. Generally, patients believed the postoperative experience was difficult. None said she would refuse the procedure if she had to go through it again. Three women commented during the immediate postoperative period that they would be hesitant to have further surgery if such were recommended. Drug use during the immediate postoperative period was not systematically studied, but some interesting anecdotal material was obtained. One patient, who had a stable personality and social history, had rationally decided that she would take all the sleeping and pain medication she could obtain from the nurses and thereby “hibernate” through the difficult postoperative period. However, she observed that these medications caused her to be disoriented and have bad dreams, and she decided she would rather put up with the moderate pain and insomnia than “lose control of my mind.” One of her dreams was particularly vivid and disturbing. In it she saw herself in a hospital bed in a dark basement. She saw light and went upstairs to her home, which was “all messy.” Her family was there but seemed strangely unconcerned about her. The family kept grab-
ADJUSTMENT
TO EXENTERATION
329
bing at her head, which she thought strange for she had just had surgery. Her interpretation of the dream was simply that her family would not take good care of the house while she was hospitalized. It was this dream that caused her to stop asking for sleep and pain medication. Bad dreams, a sense of disorientation, and anxiety were more unpleasant ‘to her than were the realities of her situation. With a clearer mind she could defend herself against the realistic fears of dying and disfigurement. Under the influence of narcotics and sedatives, her mental defenses were weakened and fears began to break into consciousness, causing her to have very uncomfortable feelings and anxieties. All patients were visited almost daily by relatives. They felt more relaxed and secure knowing that family members were in the room, in the hospital, or even staying in a nearby facility. Occupational recovery. All patients were occupied full time preoperatively. Five had been employed full time outside the home, and 11 had been full-time homemakers. Two of the latter worked outside the home part time. Four of the five patients who worked full time outside the home returned to full-time employment following their exenteration, the other was convalescing three months postoperatively. Both part-time workers returned to lighter part-time schedules. The full-time jobs included two office nurses, a parole board secretary, a gas station operator, and a waitress (Table 2). The usual pattern for returning to work was for the patient to begin working TABLE
2
OCCUPATIONAL AND SOCIAL RECOVERY
Number
Length of follow-up (months)
1
21
2 3 4 5 6 I 8 9 10 11 12 13
44 19 10 8 32 9 3 26 16 4 27 4
14
5
15 16
5 13
Occupational and social recovery Excellent; working full time as executive secretary Excellent; takes long bus trips, goes fishing Excellent; socially active, trip to Hawaii Died; weight loss, dependent personality Excellent; working full time as office nurse Excellent; water-skiing, bowling, trip to Hawaii Excellent; working full time as office nurse Satisfactory; convalescing Good; complaining of insomnia Excellent; working full time at service station Satisfactory; convalescing Excellent; working part time Died of pulmonary embolus; no major disability prior to death Good; required colostomy for sigmoid-pelvic fistula Good; no problems Died of probable pulmonary embolus; full-time church organist postoperatively
330
DEMPSEY,
BUCHSBAUM
AND
MORRISON
part time approximately 2 months postoperatively. They then increased their schedule to full-time employment during the next 2 months. All four returned to full-time jobs at 4 months. One patient, an office nurse, returned to part-time work at 6 weeks but found she tired easily. Generalized weakness was the major factor in delaying their return to full-time employment. All patients reported concerns and fears regarding spillage or other mechanical problems with their ostomy appliances. However, by 3 months postoperatively all patients reported they had adjusted well to their appliances and did not consider them a significant handicap. One lady who helped her husband operate a service station complained that the bag hindered here in leaning over fenders to work on engines. Hobbies and recreation. Patients were asked about hobbies and recreation as a measure of social adjustment. All were able to resume previous hobbies such as camping or golf. Some reported they were unable to participate as fully in water sports, although one woman resumed water-skiing. Many of the patients delayed resumption of vigorous activities, like bowling, long after they felt physically able out of fear they would “tear something loose.” Simple reassurance was enough to enable them to resume recreational pursuits. Several of the patients have undertaken long automobile, bus, and airplane trips far removed from the medical center. The patients did not encounter any problems related to the ostomy appliances even in these confined quarters. Most patients spent the majority of their spare time socializing with their own families or neighbors and reported no change in these social relationships postoperatively. Three women may have actually increased their social life by virtue of joining ostomy clubs in their local communities. Marriage and sex. The marital status of the patients is listed in Table 3. All patients had been sexually active at some time in their lives, and 10 were sexually active at the onset of the present illness. The average age of the 10 sexually active patients was 47.2 yr. They reported frequency of intercourse ranging from once per month to four times per week. All sexually active women were orgasmic, with their estimates of orgasm ranging from 10 to 100% (Table 3). Postoperatively, three patients reported being sexually active (Table 3: Numbers 6, 9, 12) The external genitalia, including clitoris and introitus, as well as a narrow band of vaginal mucosa were left intact in these patients. Patient Number 6 had a neovagina created with a split thickness skin graft and resumed intercourse twice weekly, achieving orgasm about one-quarter of the time. The other two patients were given vaginal obturators and estrogen cream to encourage epithelialization of the pelvic cavity. While these patients were able to resume sexual activity postoperatively, two had intercourse less frequently and lost the ability to achieve orgasm. None of the patients who lost their ability for sexual intercourse postoperatively regarded this as a significant burden upon her or her husband. All declined vaginal reconstruction on the grounds that neither they nor their husbands wanted any further surgery. They considered sexual activity as unnecessary, even if desirable, at their age. As one lady said, “We have had 27 years of that (sex), and if that’s all there is, that’s all there is.” One patient stated that she was
ADJUSTMENT
331
TO EXENTERATION
TABLE 3 MARRIAGE AND SEXUAL ACTIVITY Preoperative
Number
Marital status”
Frequency of intercourse per week
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16
M W M M S M D M M M M D M M M W
2-3 0 1 0 0 2 0 1 (per month) 2 0 2-3 2 2-3 2-4 l-2 0
Postoperative Orgasm m 75 50 25 15 50 100 10 100 75 100 -
Frequency of intercourse per week 0 0 0 0 0 2 0 0 2 0 0 1 0 0 0 0
Orgasm (o/o) 25 0 0 -
a S = single, M = married, W = widowed, D = divorced.
glad to be rid of her sexual responsibility but would have had a vaginoplasty if her husband had wanted her to. Patients were specifically asked about their self-image as a woman following the operative procedure. A common response to questions concerning loss of feminity was “That is the least of my worries.” Most of the women equated femininity with reproductive capacity. Most rationalized that they had their families and had no further need for reproductive capability. All the patients in this study had either natural or induced menopause prior to exenteration and were aware that further childbearing was impossible. Role of depression. Ten patients suffered transient depressive symptoms such as tearfulness, insomnia, and depressive ruminations preoperatively. Only six patients showed strong depressive features in the immediate postoperative period. Six patients reported a family history of hospitalization for depressive illness or suicide attempts, and four of the patients had themselves been treated by psychiatrists for depression in the past. Mortality. There were no operative or hospital deaths, but three patients died 3-10 months following surgery (Table 2). One patient was making an excellent recovery when she died suddenly of a probable pulmonary embolus at 3 months. She had been seen by a psychiatric consultant because of depression stemming from a previous operative procedure. She recovered without antidepressive medications or any specific psychiatric treatment. She was in a good mood prior to her exenteration and laughed appropriately during the interview when asked about her behavior as a child. She offered no psychological symptoms following
332
DEMPSEY,
BUCHSBAUM
AND
MORRISON
exenterative surgery and was making a good recovery when she died suddenly. A second patient died 10 months postoperatively, without evidence of malignancy, of probable electrolyte imbalance. In the postoperative period, she became a chronic invalid dependent on her sister for personal care and never assumed complete responsibility for her colostomy. The patient had taken aspirin and analgesics for 17 yr following radiation therapy for her primary cervical carcinoma. She said that her pelvic pain was relieved following exenteration, and she denied anxiety or depressive symptoms. However, she was not noted to smile during the interviews and experienced persistent weight loss postoperatively. The patient denied personal or family history of depression or other psychiatric illnesses. The third patient to die had multiple surgical complications postoperatively, including breakdown of her ureteral anastomosis. In spite of this, she was making good progress at home until she died of a documented pulmonary embolus 4 months postoperatively. She was considered well adjusted preoperatively and retained intact personality in spite of her postoperative complications. DISCUSSION
Improvements in surgical techniques and postoperative management in pelvic exenteration have resulted in significantly improved survival statistics. While considerable attention has been directed to at the technical aspects of the operation, few data are available on the psychological impact of the surgery. No information is available on the factors that influence patients’ acceptance of the operation and their methods of coping with pre- and postoperative stresses. Only one report has appeared on the social and psychological adjustment following pelvic exenteration [ I]. The patients in this study repesent a rather homogenous group, representative of rural, Midwestern America. Their life-style and their relationship with their physicians can best be described as “traditional.” The most common reason given by patients for accepting exenteration was the continuation of family relationships, particularly those with younger children or grandchildren. The family, and particularly the husband, was an important factor in the patient’s accepting the surgery and also played an important role in the postoperative emotional support. Depressive symptoms such as tearfulness, insomnia, and low mood are prominent in the preoperative and immediate postoperative period, present in 10 patients, but generally transient and self-limiting and of no great importance in the outcome. There was a high incidence of past personal and family history of depression requiring treatment, but this did not correlate with the outcome. Our findings that anxiety associated with the illness and its treatment are managed by family relationships agrees with Dyk and Sutherland [2]. They found a positive correlation between successful marriage and good psychological adjustment following abdominal-perineal resection. In only one of our patients was guilt evident. She thought she developed her malignancy because God was punishing her. One patient exhibited overt anger directed at her physician: “I hated the doctor who told me I needed the opera-
ADJUSTMENT
TO EXENTERATION
333
tion.” In contrast to our findings, Peck [3] found overt anger in 22 of 50 cancer patients. The anger was mostly directed at family but also at doctors and the hospital. He found that one-third of his patients evidenced guilt, and 27 of the 50 had a depressed affect. All of our patients used the term cancer in describing their illness and spoke of it openly and directly. They generally recognized the seriousness of their condition but rarely considered that they might die of their disease or as a result of the surgery. Acceptance of the exenterative surgery appears positively influenced by a favorable (and at times even unrealistic) image of the physician and medical science. The earliest contact that the prospective exenteration patients have with physicians is important. We found that patients who were gradually informed of the nature of the illness, and its treatment, tended to react more calmly and accept surgery more readily. Those patients who were “shocked” tended to have less forewarning and tended to resist surgery. The feeling of shock has been described as the initial phase of a grief reaction [4]. It may be that the “shocked” patients needed time to progress through the grief reaction to a point of rational acceptance of their condition and hope for cure by surgery. The use of tentative terms regarding diagnosis and treatment by the initial physician is desirable, and more definitive terms should be used by each succeeding level of medical specialization. Even at the tertiary level of the University Hospital Gynecologic Oncology Service, tentative proposals should be made before the operation is fully described. The physician’s responsibility does not end with the surgical procedure or the immediate postoperative care. The patients must be advised on ostomy care, diet, and activity to smooth their return to society. Reassurance and guidance can hasten the patient’s return to work and recreational activities. Brown and co-workers [l] psychologically evaluated 15 patients, an average of 4 yr following pelvic exenteration. They reported generally satisfactory adaptation to pelvic exenteration in patients first interviewed as long as 12 yr after the procedure. In the present study we have shown that satisfactory levels of psychological and physical well-being are achieved within 4 months of surgery. The quality of life, even for patients who die within the first year, is satisfactory. The long-term physical, mental, social, and occupational recovery is good. All patients who were working preoperatively returned to work within 4 months postoperatively. Patients were able to resume recreational activities and hobbies during their convalescence. There is a significant loss in sexuality following pelvic exenterations. With one exception, patients and their husbands have refused reconstructive vaginal surgery on the grounds that sexual function without reproductive capacity does not justify additional surgery. Yet, all patients had termination of childbearing capacity prior to surgery, and most were comfortable with postmenopausal sexual activity preoperatively. This attitude does not appear to have its origins in formal religion. We concluded from our study that the quality of life after exenteration is very satisfactory. The negative reaction of many physicians to pelvic exenteration is unfounded.
334
DEMPSEY, BUCHSBAUM
AND MORRISON
REFERENCES 1. Brown, R. S., et al. Social and psychological adjustment following pelvic exenteration, Amer. J. Obstet. Gynecol. 114, 162-171 (1972). 2. Dyk, R. B., and Sutherland, A. M. Adaptation of the spouse and other family members to the colostomy patient, Cancer 9, 123- 138 (1956). 3. Peck, A. Emotional reactions to having cancer, Amer. J. Roentgenol. Radium Ther. Nucl. Med. 114, 591-599 (1972). 4. Noyes, R. Jr,. Grief, J. Zowa Med. Sot. 59, 3 17-323 (1969).
ONCOLOGY
3, 325-334
Psychosocial
(1975)
Adjustment
to Pelvic
Exenteration
G. MICHAEL DEMPSEY, M.D., HERBERT J. BUCHSBAUM, M.D.,’ AND JAMES MORRISON, M.D. Departments
of Psychiatry and Obstetrics and Gynecology, University of Iowa College of Medicine, Iowa City, Iowa
Received
August 19, 1975
A structured interview was used in 16 patients who underwent pelvic exenteration for gynecologic cancer to determine the factors that influenced patients’ acceptance of the procedure and their physical, mental, and social recovery. Patients were interviewed preand postoperatively, with the longest follow-up being 44 months. Not only does the surgery offer a significantly improved prognosis, but the quality of this life is very satisfactory, with only sexual function compromised.
Pelvic exenteration is finding greater application in the treatment of gynecologic cancer. While considerable attention has been directed to the technical aspects of the procedure, few data are available concerning the psychological and social stresses that patients experience and their methods of dealing with them. This study was designed to assess the factors that influence patients’ acceptance of the procedure and their physical, mental, social, and sexual recovery. METHODS
AND
MATERIALS
The structured interview was designed to evaluate the factors in patient acceptance of the operative procedure and the methods for achieving medical, social, occupational, and sexual adjustment. The interview consisted of 75 items, including simple demographic questions such as age and progressing to more complex categories relating to the present illness and mental status. A social and sexual history was also obtained. Brief personal and family histories of psychiatric illness and cancer were recorded. A structured interview of 75 items was administered preoperatively to 23 consecutive patients undergoing celiotomy for possible pelvic exenteration. Three of the patients had no recurrent cancer, and four were found to have inoperable disease. These seven patients were excluded from this study. Sixteen patients underwent pelvic exenteration (11 total and five anterior) and constitute the study group. In addition to the pelvic exenteration, two patients required radical vulvectomy and one required a symphysiectomy as part of the definitive treatment. Two patients who had vulvectomy also had bilateral groin dissection following the exenteration and vulvectomy to complete the therapy (Table 1). Three paI Send reprint requests to Herbert J. Buchsbaum, M.D., Department ogy, University of Iowa Hospitals, Iowa City, Iowa 52242. 325 Copyright All rights
@ 1975 by Academic Press. Inc. of reproduction in any form reserved
of Obstetrics
and Gynecol-
326
DEMPSEY, BUCHSBAUM
AND MORRISON
TABLE 1 PELVIC EXENTERATION-PREVIOUS HISTORY
Number
Patient
Age
Previous treatment
Interval W
1
RB
54
Radiation therapy
1.0
2
LC
45
Radiation therapy
9
3
cc
53
Radiation therapy
10
4
MIC
60
Radiation therapy
17
5
MAC
56
None
6
HC
44
7
ME
46
Total hysterectomy Total hysterectomy
8
PE
53
None
9
LH
52
Radiation therapy
25
10
ML
SO
Radiation therapy
16
11
MOL
40
Radiation therapy
I .2
12
wo
35
Radiation therapy
1.O
13
DS
47
Radiation therapy
0.7
14
LS
47
Radiation therapy
1.0
15
MW
47
None
-
16
DW
58
Radiation therapy
6
11 0.5
-
Indication Recurrent cervical carcinoma Recurrent cervical carcinoma Recurrent cervical carcinoma Recurrent cervical carcinoma Vulvovaginal carcinoma Vaginal carcinoma Persistent cervical carcinoma Vulvovaginal carcinoma Recurrent cervical carcinoma Recurrent cervical carcinoma Recurrent cervical carcinoma Recurrent cervical carcinoma Recurrent cervical carcinoma Recurrent cervical carcinoma Cervical carcinoma Stage IVA Recurrent cervical carcinoma
Type of exenteration Total Total Anterior Total with symphysectomy Anterior with vulvectomy and groin dissection Anterior Anterior Total with vuivectomy and groin dissection Total Anterior Total Total Total Anterior Total Total
ADJUSTMENT
TO EXENTERATION
327
tients required additional surgery for malfunction of the urinary conduit, one of whom developed a small bowel fistula. Another patient had a colostomy following an anterior exenteration. The 16 patients who underwent pelvic exenteration were interviewed preoperatively and again during the early postoperative period while still convalescing in the hospital and were then followed at regular intervals when they returned for surgical follow-up visits. With the exception of one patient who died 4 months postoperatively of a pulmonary embolus, all patients were interviewed at least twice postoperatively, and many had four or more interviews. During the follow-up, good rapport was developed with the patients, and all were cooperative in answering questions for this study. Characteristics of the patient population. All patients were Caucasian. The average age at the time of initial interview was 50.5 yr. Three patients had no prior cancer treatment. Prior treatment for the other 13 patients and the indications for exenteration are shown in Table 1. The average length of schooling was 10.8 yr; 10 patients completed high school. Thirteen patients were Protestant, two were Catholic, and one had no formal religion. Six of the patients attended church regularly, three never attended church, and three attended seldom. Seven patients were from small towns (population under 50, 000), and nine were from larger towns (over 200, 000 population). All but two were born and raised on farms or in small towns. Thirteen of the patients grew up in intact homes. Two grew up in homes broken by divorce, one patient’s father died when she was six, and one patient said that her parents were unhappily married. None of the patients volunteered that she was a behavior problem at home or at school. Typical childhood discipline was strict but physically nonpunitive. The patients were generally raised in middle-class rural settings and resided in small to medium sized Midwestern towns. The interval from the onset of symptoms until the time of diagnosis ranged from 0 in the asymptomatic patients to 1 yr. The neoplasia for which exenteration was done was detected at routine pelvic examination in five women. Two women had 1 yr of vaginal bleeding and foul discharge before seeking medical assistance. The average delay for the group was almost 2 months. RESULTS Preoperative reaction. The patients had two baisc emotional reactions when told they had cancer: shock and indifference. Those that were being told for the first time that they had cancer tended to use the word “shock” to describe their feelings. By this they meant that they instantly had thoughts of death. Six patients specifically used the words “shocked” or “stunned” to describe their initial reaction; two characterized their reaction as “fearful.” Most of the patients previously treated for cancer reacted with equanimity. Two denied strong feelings, stating that they had assumed the worst and had already handled their feelings on the matter. A common attitude was that they were unlucky to have such a serious illness, but given a chance, the doctor would take care of it. None of
328
DEMPSEY,
BUCHSBAUM
AND
MORRISON
the patients gave the impression that she regarded cancer as different from other serious illnesses, and none reported a prior carcinophobia. Husbands’ reaction to diagnosis. When patients were asked about their husbands’ reaction to the diagnosis, the usual response was “He reacted about like I did.” All the married women spontaneously mentioned that their families in general, and their husbands in particular, had been of great help during their illness. Acceptance ofsurgery. Ten of the patients said that they had never considered refusing consent for exenteration because they believed the procedure offered them their only chance for cure. Six patients admitted to transitory thoughts of refusing surgery. A common reason given by these patients for finally consenting to the procedure was their desire to see their family grow. Most often this involved children or grandchildren. Two patients were motivated by chronic pelvic pain, which they thought would be relieved by the operative procedure. Mood and method of coping prior to surgery. Ten of the patients reported significant feelings of depression preoperatively, and two admitted fleeting thoughts of suicide. All of the patients were needful of their families and spent increased time with them prior to surgery. Family ties were a conspicuous factor in helping the patient in the preoperative period. Several patients specifically mentioned prayer as a method of coping with their apprehensions regarding the prospective surgery. Two patients reported marked anxiety preoperatively, and one said that she hated the doctor who told her she needed exenteration. Short-term postoperative reactions. Many patients were totally amnestic for their early postoperative experience. They became fully aware of their surroundings 2 or 3 days postoperatively. During the immediate postoperative period, patients complained of fatigue, irritation due to the nasointestinal tube, insomnia, and pain, in that order. All patients but one complained of fatigue. Insomnia was common but was not directly related to pain. Some women with little pain had severe insomnia; some with moderately severe pain slept well with analgesics. Low back and hip pain were mentioned by four patients in the acute postoperative period, which probably represented musculoskeletal reaction to the stress of lying on the operative table, part of the time in lithotomy position. Generally, patients believed the postoperative experience was difficult. None said she would refuse the procedure if she had to go through it again. Three women commented during the immediate postoperative period that they would be hesitant to have further surgery if such were recommended. Drug use during the immediate postoperative period was not systematically studied, but some interesting anecdotal material was obtained. One patient, who had a stable personality and social history, had rationally decided that she would take all the sleeping and pain medication she could obtain from the nurses and thereby “hibernate” through the difficult postoperative period. However, she observed that these medications caused her to be disoriented and have bad dreams, and she decided she would rather put up with the moderate pain and insomnia than “lose control of my mind.” One of her dreams was particularly vivid and disturbing. In it she saw herself in a hospital bed in a dark basement. She saw light and went upstairs to her home, which was “all messy.” Her family was there but seemed strangely unconcerned about her. The family kept grab-
ADJUSTMENT
TO EXENTERATION
329
bing at her head, which she thought strange for she had just had surgery. Her interpretation of the dream was simply that her family would not take good care of the house while she was hospitalized. It was this dream that caused her to stop asking for sleep and pain medication. Bad dreams, a sense of disorientation, and anxiety were more unpleasant ‘to her than were the realities of her situation. With a clearer mind she could defend herself against the realistic fears of dying and disfigurement. Under the influence of narcotics and sedatives, her mental defenses were weakened and fears began to break into consciousness, causing her to have very uncomfortable feelings and anxieties. All patients were visited almost daily by relatives. They felt more relaxed and secure knowing that family members were in the room, in the hospital, or even staying in a nearby facility. Occupational recovery. All patients were occupied full time preoperatively. Five had been employed full time outside the home, and 11 had been full-time homemakers. Two of the latter worked outside the home part time. Four of the five patients who worked full time outside the home returned to full-time employment following their exenteration, the other was convalescing three months postoperatively. Both part-time workers returned to lighter part-time schedules. The full-time jobs included two office nurses, a parole board secretary, a gas station operator, and a waitress (Table 2). The usual pattern for returning to work was for the patient to begin working TABLE
2
OCCUPATIONAL AND SOCIAL RECOVERY
Number
Length of follow-up (months)
1
21
2 3 4 5 6 I 8 9 10 11 12 13
44 19 10 8 32 9 3 26 16 4 27 4
14
5
15 16
5 13
Occupational and social recovery Excellent; working full time as executive secretary Excellent; takes long bus trips, goes fishing Excellent; socially active, trip to Hawaii Died; weight loss, dependent personality Excellent; working full time as office nurse Excellent; water-skiing, bowling, trip to Hawaii Excellent; working full time as office nurse Satisfactory; convalescing Good; complaining of insomnia Excellent; working full time at service station Satisfactory; convalescing Excellent; working part time Died of pulmonary embolus; no major disability prior to death Good; required colostomy for sigmoid-pelvic fistula Good; no problems Died of probable pulmonary embolus; full-time church organist postoperatively
330
DEMPSEY,
BUCHSBAUM
AND
MORRISON
part time approximately 2 months postoperatively. They then increased their schedule to full-time employment during the next 2 months. All four returned to full-time jobs at 4 months. One patient, an office nurse, returned to part-time work at 6 weeks but found she tired easily. Generalized weakness was the major factor in delaying their return to full-time employment. All patients reported concerns and fears regarding spillage or other mechanical problems with their ostomy appliances. However, by 3 months postoperatively all patients reported they had adjusted well to their appliances and did not consider them a significant handicap. One lady who helped her husband operate a service station complained that the bag hindered here in leaning over fenders to work on engines. Hobbies and recreation. Patients were asked about hobbies and recreation as a measure of social adjustment. All were able to resume previous hobbies such as camping or golf. Some reported they were unable to participate as fully in water sports, although one woman resumed water-skiing. Many of the patients delayed resumption of vigorous activities, like bowling, long after they felt physically able out of fear they would “tear something loose.” Simple reassurance was enough to enable them to resume recreational pursuits. Several of the patients have undertaken long automobile, bus, and airplane trips far removed from the medical center. The patients did not encounter any problems related to the ostomy appliances even in these confined quarters. Most patients spent the majority of their spare time socializing with their own families or neighbors and reported no change in these social relationships postoperatively. Three women may have actually increased their social life by virtue of joining ostomy clubs in their local communities. Marriage and sex. The marital status of the patients is listed in Table 3. All patients had been sexually active at some time in their lives, and 10 were sexually active at the onset of the present illness. The average age of the 10 sexually active patients was 47.2 yr. They reported frequency of intercourse ranging from once per month to four times per week. All sexually active women were orgasmic, with their estimates of orgasm ranging from 10 to 100% (Table 3). Postoperatively, three patients reported being sexually active (Table 3: Numbers 6, 9, 12) The external genitalia, including clitoris and introitus, as well as a narrow band of vaginal mucosa were left intact in these patients. Patient Number 6 had a neovagina created with a split thickness skin graft and resumed intercourse twice weekly, achieving orgasm about one-quarter of the time. The other two patients were given vaginal obturators and estrogen cream to encourage epithelialization of the pelvic cavity. While these patients were able to resume sexual activity postoperatively, two had intercourse less frequently and lost the ability to achieve orgasm. None of the patients who lost their ability for sexual intercourse postoperatively regarded this as a significant burden upon her or her husband. All declined vaginal reconstruction on the grounds that neither they nor their husbands wanted any further surgery. They considered sexual activity as unnecessary, even if desirable, at their age. As one lady said, “We have had 27 years of that (sex), and if that’s all there is, that’s all there is.” One patient stated that she was
ADJUSTMENT
331
TO EXENTERATION
TABLE 3 MARRIAGE AND SEXUAL ACTIVITY Preoperative
Number
Marital status”
Frequency of intercourse per week
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16
M W M M S M D M M M M D M M M W
2-3 0 1 0 0 2 0 1 (per month) 2 0 2-3 2 2-3 2-4 l-2 0
Postoperative Orgasm m 75 50 25 15 50 100 10 100 75 100 -
Frequency of intercourse per week 0 0 0 0 0 2 0 0 2 0 0 1 0 0 0 0
Orgasm (o/o) 25 0 0 -
a S = single, M = married, W = widowed, D = divorced.
glad to be rid of her sexual responsibility but would have had a vaginoplasty if her husband had wanted her to. Patients were specifically asked about their self-image as a woman following the operative procedure. A common response to questions concerning loss of feminity was “That is the least of my worries.” Most of the women equated femininity with reproductive capacity. Most rationalized that they had their families and had no further need for reproductive capability. All the patients in this study had either natural or induced menopause prior to exenteration and were aware that further childbearing was impossible. Role of depression. Ten patients suffered transient depressive symptoms such as tearfulness, insomnia, and depressive ruminations preoperatively. Only six patients showed strong depressive features in the immediate postoperative period. Six patients reported a family history of hospitalization for depressive illness or suicide attempts, and four of the patients had themselves been treated by psychiatrists for depression in the past. Mortality. There were no operative or hospital deaths, but three patients died 3-10 months following surgery (Table 2). One patient was making an excellent recovery when she died suddenly of a probable pulmonary embolus at 3 months. She had been seen by a psychiatric consultant because of depression stemming from a previous operative procedure. She recovered without antidepressive medications or any specific psychiatric treatment. She was in a good mood prior to her exenteration and laughed appropriately during the interview when asked about her behavior as a child. She offered no psychological symptoms following
332
DEMPSEY,
BUCHSBAUM
AND
MORRISON
exenterative surgery and was making a good recovery when she died suddenly. A second patient died 10 months postoperatively, without evidence of malignancy, of probable electrolyte imbalance. In the postoperative period, she became a chronic invalid dependent on her sister for personal care and never assumed complete responsibility for her colostomy. The patient had taken aspirin and analgesics for 17 yr following radiation therapy for her primary cervical carcinoma. She said that her pelvic pain was relieved following exenteration, and she denied anxiety or depressive symptoms. However, she was not noted to smile during the interviews and experienced persistent weight loss postoperatively. The patient denied personal or family history of depression or other psychiatric illnesses. The third patient to die had multiple surgical complications postoperatively, including breakdown of her ureteral anastomosis. In spite of this, she was making good progress at home until she died of a documented pulmonary embolus 4 months postoperatively. She was considered well adjusted preoperatively and retained intact personality in spite of her postoperative complications. DISCUSSION
Improvements in surgical techniques and postoperative management in pelvic exenteration have resulted in significantly improved survival statistics. While considerable attention has been directed to at the technical aspects of the operation, few data are available on the psychological impact of the surgery. No information is available on the factors that influence patients’ acceptance of the operation and their methods of coping with pre- and postoperative stresses. Only one report has appeared on the social and psychological adjustment following pelvic exenteration [ I]. The patients in this study repesent a rather homogenous group, representative of rural, Midwestern America. Their life-style and their relationship with their physicians can best be described as “traditional.” The most common reason given by patients for accepting exenteration was the continuation of family relationships, particularly those with younger children or grandchildren. The family, and particularly the husband, was an important factor in the patient’s accepting the surgery and also played an important role in the postoperative emotional support. Depressive symptoms such as tearfulness, insomnia, and low mood are prominent in the preoperative and immediate postoperative period, present in 10 patients, but generally transient and self-limiting and of no great importance in the outcome. There was a high incidence of past personal and family history of depression requiring treatment, but this did not correlate with the outcome. Our findings that anxiety associated with the illness and its treatment are managed by family relationships agrees with Dyk and Sutherland [2]. They found a positive correlation between successful marriage and good psychological adjustment following abdominal-perineal resection. In only one of our patients was guilt evident. She thought she developed her malignancy because God was punishing her. One patient exhibited overt anger directed at her physician: “I hated the doctor who told me I needed the opera-
ADJUSTMENT
TO EXENTERATION
333
tion.” In contrast to our findings, Peck [3] found overt anger in 22 of 50 cancer patients. The anger was mostly directed at family but also at doctors and the hospital. He found that one-third of his patients evidenced guilt, and 27 of the 50 had a depressed affect. All of our patients used the term cancer in describing their illness and spoke of it openly and directly. They generally recognized the seriousness of their condition but rarely considered that they might die of their disease or as a result of the surgery. Acceptance of the exenterative surgery appears positively influenced by a favorable (and at times even unrealistic) image of the physician and medical science. The earliest contact that the prospective exenteration patients have with physicians is important. We found that patients who were gradually informed of the nature of the illness, and its treatment, tended to react more calmly and accept surgery more readily. Those patients who were “shocked” tended to have less forewarning and tended to resist surgery. The feeling of shock has been described as the initial phase of a grief reaction [4]. It may be that the “shocked” patients needed time to progress through the grief reaction to a point of rational acceptance of their condition and hope for cure by surgery. The use of tentative terms regarding diagnosis and treatment by the initial physician is desirable, and more definitive terms should be used by each succeeding level of medical specialization. Even at the tertiary level of the University Hospital Gynecologic Oncology Service, tentative proposals should be made before the operation is fully described. The physician’s responsibility does not end with the surgical procedure or the immediate postoperative care. The patients must be advised on ostomy care, diet, and activity to smooth their return to society. Reassurance and guidance can hasten the patient’s return to work and recreational activities. Brown and co-workers [l] psychologically evaluated 15 patients, an average of 4 yr following pelvic exenteration. They reported generally satisfactory adaptation to pelvic exenteration in patients first interviewed as long as 12 yr after the procedure. In the present study we have shown that satisfactory levels of psychological and physical well-being are achieved within 4 months of surgery. The quality of life, even for patients who die within the first year, is satisfactory. The long-term physical, mental, social, and occupational recovery is good. All patients who were working preoperatively returned to work within 4 months postoperatively. Patients were able to resume recreational activities and hobbies during their convalescence. There is a significant loss in sexuality following pelvic exenterations. With one exception, patients and their husbands have refused reconstructive vaginal surgery on the grounds that sexual function without reproductive capacity does not justify additional surgery. Yet, all patients had termination of childbearing capacity prior to surgery, and most were comfortable with postmenopausal sexual activity preoperatively. This attitude does not appear to have its origins in formal religion. We concluded from our study that the quality of life after exenteration is very satisfactory. The negative reaction of many physicians to pelvic exenteration is unfounded.
334
DEMPSEY, BUCHSBAUM
AND MORRISON
REFERENCES 1. Brown, R. S., et al. Social and psychological adjustment following pelvic exenteration, Amer. J. Obstet. Gynecol. 114, 162-171 (1972). 2. Dyk, R. B., and Sutherland, A. M. Adaptation of the spouse and other family members to the colostomy patient, Cancer 9, 123- 138 (1956). 3. Peck, A. Emotional reactions to having cancer, Amer. J. Roentgenol. Radium Ther. Nucl. Med. 114, 591-599 (1972). 4. Noyes, R. Jr,. Grief, J. Zowa Med. Sot. 59, 3 17-323 (1969).
