Sexual Functioning After Treatment of In Situ Vulvar Cancer: Preliminary Report

Abstract

Forty-two patients treated for in situ vulvar cancer at two institutions participated in structured assessment interviews and completed questionnaires to examine postoperative sexual, marital, and psychological adjustment. Patient responses were compared with a matched sample of gynecologically healthy women. The results indicated a specific pattern of sexual disruption for the women treated for preinvasive disease. Sexual behavior patterns appeared to be maintained, as was the desire phase of the sexual response cycle. However, there was specific disruption of the phases of excitement and resolution and, to a lesser extent, orgasm. In addition to a two- to threefold increase in the frequency of sexual dysfunction, 30% of the sample was sexually inactive at follow-up. Although replication of these findings is necessary, this investigation suggests that sexual functioning correlates with the magnitude of treatment.

The recent literature on intraepithelial neoplasia of the vulva has suggested that the incidence of this genital disease in women is increasing¹ and that the age at diagnosis is lower than that for invasive vulvar cancer, occurring in the third or fourth decade rather than the sixth or seventh decade.² In this context, concern about psychological and behavioral outcomes, particularly sexual functioning morbidity, has been raised.^3–5 The original treatment for carcinoma in situ advocated by Knight⁶ was wide local excision, but many gynecologists have preferred to remove the entire vulva (ie, total or radical vulvectomy), arguing that the disease is preinvasive and frequently multicentric. However, this procedure incurs considerable emotional cost, as evidenced by substantial emotional and sexual disruption.^7–10 Not only are responsiveness and intercourse disrupted, but the majority of the women and their partners abandon all sexual activity. These complications have led physicians to consider other approaches, provided that recurrence rates are not compromised.¹¹ Surgical alternatives have included wide local excision of the lesion or a “skinning” procedure in which the vulvar skin is removed and replaced by a skin graft from a donor site.¹² The primary nonsurgical approaches have included the topical use of chemotherapy or laser vaporization. Although the cosmetic and sexual results are believed to be optimal with these latter procedures, confirming data are not available.^13,14

The present investigation evaluates the sexual and psychological outcomes after treatment, principally wide local excision or simple vulvectomy. Responses in these patients were compared with those of age- and menopausal status-matched healthy women seeking routine gynecologic examinations. The latter group was included to estimate the base rate of sexual functioning deficits that occur under normal health and life circumstances. We used an assessment strategy with previously demonstrated reliability, validity, and patient acceptability¹⁵ to document patient sexual and psychological outcomes and the extent of disease and magnitude of treatment.

Materials and Methods

We surveyed the tumor registry and the records of the Department of Obstetrics and Gynecology at two large midwest medical centers for cases of in situ vulvar disease treated from January 1975 through July 1983. Ninety-one patients were identified. Forty-four subjects were excluded from further study participation because of one or more of the following: significant sensory impairment (eg, deafness, blindness), history of diagnosed mental disorder, physical handicap, invasive cancer diagnosis before or after in situ diagnosis, presence of a colostomy, loss to follow-up, and death. The other 47 women were contacted by mail, and 42 (88%) agreed to participate. The patients ranged in age from 31–81 years (average 50.3 years). Treatments included laser or chemotherapy (N = 6), wide local excision (N = 26), simple/total vulvectomy (N = 9), and radical vulvectomy (N = 1). The length of time since treatment ranged from 14 months to ten years (average 5.2 years).

Forty-two women seeking routine gynecologic care who had no history of vulvar disease served as comparison subjects. Those women eligible for participation had had no gynecologic surgery within the previous three years and were not anticipating surgery or pregnancy within the next two years. Women with a comparable age (within five years) and menopausal and educational status as a patient were each recruited from upcoming clinic schedules. There was an 85% acceptance rate; the primary reason for refusal was that the potential subject was “too busy.” The comparison women ranged in age from 30–61 years (average 44.3 years).

One-hour individual interviews were conducted in the outpatient clinic by a female interviewer experienced in the assessment of sexual dysfunction and the psychological and medical outcomes of vulvar disease. The interviewer determined whether each subject was currently sexually active (defined as the occurrence of sexual intercourse or an equivalent intimate activity at least once per month for the previous six months).

Three measures were used to assess the frequency of sexual behavior. The Sexual Experience scale from the Derogatis Sexual Functioning Inventory¹⁶ was used to assess the range of current sexual activities. The scale includes 24 heterosexual sexual behaviors ranging from kissing to intercourse. Scores can range from 0–24. Subjects were also asked to provide the frequency of sexual intercourse and the frequency of partner kissing during the previous month.

The sexual response cycle was assessed by phase, with two measures of each phase. For the desire phase, subjects were asked to state their preferred frequency of intercourse and partner kissing. We then calculated scores based on the discrepancy with the actual behavioral estimates, and used a five-point rating scale (0 = no desire problem, 1 = rarely, 2 = sometimes, 3 = frequently, 4 = always a desire problem) for the subject to rate the frequency of current desire phase difficulties.

For the excitement phase, subjects rated the frequency of current excitement phase difficulties using the five-point scale and the Sexual Arousability Index,¹⁷ which includes 28 sexual/erotic experiences. The subjects rated each activity on a seven-point scale, ranging from adverse effect on sexual arousal (−1) to activity always causes sexual arousal (5), in terms of their present feelings when engaging in the activity; the items were summed for a total score, which ranged from −28 to 140.

For the orgasm phase, subjects rated the frequency of current orgasm phase difficulties with the five-point scale and also estimated orgasm frequency, in percentage of occasions attempted, during sexual intercourse in the past month.

For the resolution phase, subjects rated the frequency of current resolution phase difficulties with the five-point scale. A global sexual evaluation was obtained with a nine-point scale, with descriptors ranging from could not be worse (0) to could not be better (8), with adequate (4) as the midpoint. Subjects picked the one statement that best described their present sexual life.

The presence or absence of the DSM-III¹⁸ sexual dysfunction diagnoses—inhibited sexual desire, inhibited sexual excitement, inhibited orgasm, vaginismus, and dyspareunia—was determined by the psychological assessor during the interview. The diagnosis of sexual dysfunction required the presence of behavioral disruption (eg, lack of orgasm) and a report of related distress from the woman. For the patients, these determinations were made for current sexual functioning and retrospectively for the periods before and one year after vulvar treatment.

Two measures of psychosocial adjustment were used. The Profile of Mood States¹⁹ assessed the woman’s current mood. This 65-item self-report inventory asks the subject how she has felt during the past week and yields six mood disturbance scales: Tension-Anxiety, Depression-Dejection, Anger-Hostility, Vigor-Activity, Fatigue-Inertia, and Confusion-Bewilderment. A modified version of the Dyadic Adjustment Scale²⁰ was used to assess marital satisfaction.

Three classes of medical assessment were made. We evaluated medical charts for the present status of coincidental, nonmalignant disease and associated therapy for twelve systems (eg, cardiovascular, gastrointestinal, endocrine). A rating scale from 0–4 was used for each system (0 = no condition/normal; 1 = mild, asymptomatic; 2 = moderate/transient symptomatic requiring no therapy; 3 = severe/symptomatic dysfunction responsive to therapy; 4 = most severe/life-threatening). We reviewed patients’ charts to quantify the magnitude of vulvar disease and treatment. Sixteen areas of the external genitalia were rated for the presence/absence of disruption. In addition, we recorded the presence/absence of eight areas of difficulty, including sexual difficulties, urinary problems, leg edema, genital numbness, genital pain, fatigue, and body image or mood disturbance, as noted by physicians during follow-up.

Finally, the patients were asked five questions regarding information provision by the medical staff for the treatment procedures received, sexual outcomes after treatment, and the inclusion of the marital partner during information provision.

For most of the analyses, we used a multivariate analysis of variance model, with follow-up univariate analyses of variance to identify which measure(s) contributed to the significant multivariate analysis of variance. Correlations were calculated between relevant sexual and medical variables.

Results

Analyses indicated significant differences between the sexually active patients and healthy women at the time of follow-up. The multivariate analysis of variance for sexual behavior indicated no differences between the samples. When examining the analyses for the sexual response cycle, an interesting pattern emerged. The patients did not report diminished desire. The response cycle difficulties include excitement disruption and, to a lesser extent, orgasmic disruption (P = .14). In this context, the resolution disruption was expected because many women reported residual tension and general sexual dissatisfaction. However, the patients’ global evaluation of their sexual life was not significantly different from that for the healthy women (average).

Table 1 displays the change in frequency of sexual dysfunction. Of methodologic importance is the comparability of sexual dysfunction frequencies between the healthy women and the estimates for the patients before treatment. When the in situ group was examined across time, the greatest change was observed from pre- to posttreatment across all categories of sexual dysfunction. Follow-up analyses indicated significant increases in the frequency of diagnoses of inhibited sexual excitement and inhibited orgasm from pretreatment to the present. Overall, there was a two- to threefold increase in dysfunction across time for the in situ patients, and substantial numbers were no longer sexually active.

Table 1.

Frequency of Sexual Dysfunctions Among Healthy Women and Across Time for Women Treated for In Situ Vulvar Disease

		In situ patients across time†
Sexual dysfunction	Healthy women*	Before treatment	1 yr post- treatment	At study follow-up
Inhibited sexual    desire	21	13	23	25
Inhibited sexual    excitement†	12	15	31	36
Inhibited orgasm†	10	18	36	28
Vaginismus	0	0	3	10
Dyspareunia	0	5	10	8
Not sexually active	0	8	21	33

Data are presented as percentages.

^*The entire sample selected was sexually active.

^†Indicates significant difference (P < .05) between assessments for the in situ group.

In terms of psychosocial adjustment, patients reported significantly higher levels of total mood disturbance, and this was found for all scales except vigor. There were no significant differences between the groups with respect to marital adjustment. The values found for this scale for both groups were in the range for normal, nondistressed couples.²⁰

More extensive treatment correlated significantly with disruption of the desire and resolution phases of the sexual response cycle, with the patients’ judgments of their desire problems correlating .45 and resolution correlating .53 with disruption to the clitoris. Such relationships were not found with judgments of excitement, and those for orgasm only approached significance (.33).

We also examined the covariation of treatment group membership (ie, wide local excision, simple vulvectomy) and magnitude of sexual disruption. Group membership was significantly correlated with sexual difficulties, including subjects’ judgment of their desire (.32) and orgasm (.39) difficulties, and the estimated frequency of orgasm (−.41); patients with the greatest genital disruption had greater sexual difficulties.

Comparing the wide local excision and vulvectomy patients for medical status at diagnosis, we found no significant differences between the groups in their initial symptom reports (eg, itching, burning, lesion, etc) to physicians (as recorded in the medical chart) and their retrospective accounts of symptoms. In addition, the groups did not differ in the incidence of other conditions associated with vulvar disease (eg, condyloma, herpes, cervical dysplasia).

Quantification of the extent of disease and treatment was examined. We evaluated 16 perineal sites. Patients treated with vulvectomy had significantly more disease found on the left labium minus and the left and right labia majora than the patients treated with wide local excision. It is interesting that there was no significant difference between the groups in disease in the clitoral area. We also evaluated these same sites to quantify treatment location. As expected, there were significant differences between the groups, with the vulvectomy group always undergoing greater surgical disruption across 15 of the 16 sites. For the remaining site, the anus, there was no difference between groups in the extent of surgical disruption. The correlation between the magnitude of disease and treatment was .55.

Complications of treatment and follow-up were also noted. Although there was a significant difference between the two surgery groups in the length of hospital stay, this did not portend a more difficult long-term recovery, as indicated by physicians’ records. There were no significant differences between the groups in the notation of follow-up complications (eg, urinary problems, numbness at treatment site, pain, sexual problems, body image disturbance). However, there was also a low incidence of such notations in physicians’ follow-up summaries.

All patients were asked to recall the adequacy of the pretreatment information received. Table 2 displays these results. There were no significant differences between the groups in the medical evaluation, with the majority (70–77%) receiving information and reporting satisfaction with the type, timing, and clarity of facts such as the surgical aspects of their treatment. The patients were less positive regarding sexual outcome information. Sixty to 84% of the patients received no information. Vulvectomy patients were significantly more likely to receive information, yet most patients (ie, 48–60%) in both groups wished to receive sexual information. Finally, patients also indicated that if sexual information were available, it should also be provided to their sexual partner.

Table 2.

Evaluation of the Adequacy of Pretreatment Information Across Modalities

Evaluation category	Conservative treatment (N = 32)*	Vulvectomy (N = 10)
Inclusion of information regarding    medical outcomes
No information given	6	0
Inadequate information given	13	30
Adequate information given	35	30
Very adequate information given	42	40
Don’t know; cannot remember	3	0
Inclusion of information regarding sex-    ual functioning outcomes†
No information given	84	60
Inadequate information given	3	0
Adequate information given	10	20
Very adequate information given	3	20
Patients’ preference for sexuality infor-    mation
No preference for information	29	0
Neutral	23	40
Preferred information	48	60
Inclusion of sexual partner in sexual in-    formation provision
No partner/not sexually active	26	0
No information to patient or partner	48	60
Partner present, but not included	19	10
Partner present, included	6	30
Patients’ preference for inclusion of    sexual partner in sexual information    provision†
No partner/not sexually active	23	0
Did not prefer partner inclusion	29	10
Preferred partner inclusion	45	90

Data are presented as percentages.

^*Includes wide local excision (N = 26) and laser or chemotherapy (N = 6).

^†Indicates significant difference (P < .05) between conservative and vulvectomy groups.

Discussion

This is the first description of functional status outcomes after treatment for in situ vulvar disease. Although our study is limited by the lack of pretreatment observations, the observations in healthy women do provide a point of comparison, as do the analyses of conservative treatment (eg, wide local excision) versus vulvectomy.

The findings indicate that surgical vulvar treatment may result in a change in responsiveness and in the incidence of sexual dysfunction. Sexual activity was maintained and women did not lose their desire for sexual activity, despite the excitement and orgasm difficulties they reported. It appeared that more women became sexually inactive over time, although longitudinal observation is needed to confirm these findings. The interviews indicated the womens’ reluctance, because of the genital changes, to initiate relationships with new partners. For those women who maintained pretreatment relationships or who were able to enter into new ones, the marital data indicated satisfactory relationships. These sexual outcomes correlated with the magnitude of surgical intervention. The current frequency of orgasm correlated negatively (−.41) with the magnitude of surgical treatment, and disruption of the clitoris appeared to be singularly important in the relationship to posttreatment sexual outcomes. Thus, if curative aspects were comparable, conservative treatments appeared to better preserve sexual functioning.

Most patients reported that they did not receive adequate information regarding the sexual outcomes of their treatment. This information appeared to be specifically lacking, because other topics (eg, timing of treatment, nature of surgical procedures) were explained adequately. Further, patients expressed a clear preference to receive information on sexual outcomes. This information might elucidate, for example, the genital structures to be affected and the likely disrupted response patterns (eg, excitement phase difficulties).

The patients reported substantial and significant levels of mood distress (in comparison with normally healthy women), as indicated on the Profile of Mood States. Without a pretreatment assessment, it is impossible to determine whether these findings represent a continuation of distress from this health stressor. This finding is, however, in agreement with our previous report on psychological outcomes after treatment for invasive vulvar cancer.⁷

It seems important to determine whether other treatments, such as laser or chemotherapy, cause less disruption. Our observations suggest that outcomes with these latter treatments may be similar to those for women treated with wide local excision. Adequate pretreatment sexual information also appears important to these patients regardless of the treatment method, because many maintain, or would prefer to maintain, their sexual activity despite the genital change and their personal views that they have sexual response cycle deficits. Obtaining comprehensive descriptive data on sexual outcomes is an important and necessary step toward preventing or remediating sexual and psychological difficulties in women treated for in situ vulvar cancer.