Berek and Hacker's Gynecologic Oncology, 5th Edition
Anna O. Levin
Kristen M. Carpenter
Barbara L. Andersen
For most women, a diagnosis of gynecologic cancer is a crisis. For the majority, adaptation ensues and emotional distress dissipates with recovery. For others, cancer becomes a chronic stressor, either because the disease has disseminated through the body and can be controlled only with radical treatments, or because a survivor's coping strategies are not adequate. In any case, management of patients with gynecologic malignancies must consider the psychological and behavioral aspects of the disease. A review of the data on psychological and behavioral issues relevant to gynecologic cancer is presented, including discussion of sexual morbidity. In addition, practical information that can be used to conceptualize and assist patients' coping is provided.
Pap Screening and Follow-Up
Research suggests that individuals become distressed during medical screening, long before a cancer diagnosis is suggested (1). In the case of an abnormal screen, many women will experience significant anxiety, distress, and daily life disruptions. Ideström and colleagues (2) described reactions to abnormal Papanicolaou (Pap) test results in a sample of 242 women. More than half of the women surveyed (59%) reported feelings of worry and anxiety after being informed of their abnormal Pap result, and about a third (30%) of women reported that their daily life was disrupted in the time between the initial Pap result and follow-up tests. A smaller proportion of women (8%) reported sexual dysfunction symptoms. Another large survey of 3,500 women found increased risk for anxiety in response to an abnormal Pap result in women who were younger, had children, were current smokers, or had the highest levels of physical activity (3). Lerman and colleagues (4) reported that women who receive abnormal Pap results worry more about cancer and have significantly more disruptions in mood, daily activities, sexual interest, and sleep patterns when compared to women with normal results. Regarding the initial gynecologic oncology consultation, patients report significantly elevated psychiatric symptoms, with 42% reporting clinical levels of depressive symptoms and 30% reporting moderate to severe anxiety symptoms, regardless of whether the eventual diagnosis is one of cancer or benign gynecologic disease (5).
The relationship between increased psychological distress and nonadherence to screening and treatment recommendations is well documented in cancer patients (e.g., breast cancer ). Possible explanations for noncompliance following an abnormal Pap result include fear of the diagnostic procedures, not wanting to know if something is wrong, fear of a cancer diagnosis, belief that the outcomes will be negative (fatalism), and belief that one is too old for treatment (7).
Fortunately, nonadherence to follow up recommendations can be addressed through brief, low-cost interventions. For example, Stewart and colleagues (8) prepared a brief psychoeducational brochure for women who were referred for biopsy. Results demonstrated that women who received the brochure were significantly less distressed. Moreover, 75% of women who received the materials complied with treatment and follow-up 18 to 24 months later compared with 46% of women not receiving the materials.
The Stress of Diagnosis
Severe, acute stress occurs at the time of cancer diagnosis (9,10). In addition to immediate and subsequent psychological effects of stress, cancer-specific stress triggers biological effects. For example, following surgery and prior to adjuvant treatment, stress among breast cancer patients is associated with immune down regulation, shown across assays for NK cell cytoxicity (NKCC); the response of NK cells to recombinant interferon gamma (rIFN-g); and T cell responses including proliferative responses to concanavalin A (ConA); phytohemagglutinin (PHA); and a T3 monoclonal antibody (MoAb) (11). Patients face difficult circumstances throughout their illness, but the shock of learning the diagnosis is the first. The term existential plight has been used to describe this period and the emotional turmoil that continues during treatment (12). The emotions and sources of distress may include:
- Depression from life disruption and doubts concerning the future.
- Anxiety anticipating cancer treatment.
- Confusion from dealing with a complex medical environment.
- Anger from the loss of childbearing capacity and the opportunity to choose whether to have children.
- 5. Guilt from concerns that previous sexual activity may have “caused” the cancer. The guilt may be mixed with concerns about how future sexual activity will be disrupted after cancer treatment.
An early study conducted in 1989 compared mood disturbance among those recently diagnosed with a gynecological cancer with two matched groups, one with benign gynecologic disease anticipating surgery and the other with no disease (i.e., healthy women). All completed a selfreport inventory on the emotions they experienced during their initial evaluation (13). Findings were as follows:
- Only women with cancer described themselves as having negative moods suggestive of depression.
- 2. In contrast, high anxiety was reported by both groups with disease, whether benign or malignant.
- 3. There were no differences in the level of anger between the groups.
- 4. High levels of confusion were reported only by the patients with cancer.
- 5. There were equivalent levels of fatigue among the disease groups.
Since this early clinical work, consistent data have been reported which underscore the significant distress experienced by many cancer patients. Mental health disorders among cancer patients are prevalent, largely unrecognized, and usually untreated. It is consistently estimated that 30% to 50% of cancer patients meet criteria for mood or anxiety disorders, with depression being the most common (14,15). Specifically, estimates for major depressive disorder (MDD) are 22% to 29% for patients with early stage disease (16), 8% to 40% for patients with advanced disease (17), and increase further with recurrence (18). Among breast and gynecologic cancer patients, Zabora et al. found prevalence of MDD to be 33% and 30%, respectively (19). Finally, other morbidity comes with depression, such as comorbid anxiety (20,21), poorer quality of life (21,22,23), fatigue (25,26), and more distress from physical symptoms (27). Unfortunately, cancer patients with comorbid depression are not readily identified. For example, among 112 women with major depression undergoing cancer treatment, Ell and colleagues found that only 12% were receiving antidepressants and only 5% were receiving psychological therapy (28).
Patients experiencing high levels of distress have many difficulties, including: (i) problems understanding and remembering all that they have been told, including both simple information (e.g., what time they are to be admitted) and more complex information (e.g., the organs to be surgically removed and the nature of the side effects); (ii) difficulty managing personal affairs (e.g., contacting their insurance company or arranging for child care during recovery); and (iii) difficulty with being a “patient” and allowing others to care for them. Even for those with some knowledge of gynecologic surgeries, cancer treatment is qualitatively different. For example, a woman's mother, sister, or a close friend may have related her experiences with hysterectomy. Even if the surgery involved an abdominal rather than a vaginal approach, the preoperative and postoperative experience for the woman with cancer will be notably different from the patient's expectations (e.g., bowel preparation, length of recovery, vaginal shortening, bladder dysfunction). Thus, it is normal for any patient to experience cognitive, emotional, and behavioral difficulties, and it is the rare patient who does not require supportive assistance as treatment approaches.
Finally, the acute stress associated with a cancer diagnosis may portend later difficulties. When there is an absence of positive coping, patients subsequently report a loss of meaning in their lives (29). Patients with high levels of diagnostic distress have been also found to have high depressive symptoms during follow-up (30), as well as lower quality of life (30).
Research suggests that patients with recurrent cancer have levels of stress equivalent to that reported when receiving their initial diagnosis. A controlled, prospective study followed 227 women for 8 years after their diagnosis of breast cancer. Among them, 30 were diagnosed with recurrence during follow-up and their reaction to the recurrence was compared to their reaction to their initial diagnosis (31). Women experiencing recurrence reported their stress about cancer to be equivalent to their reports after their initial diagnoses. In contrast, emotional distress and social functioning showed no disruption at recurrence, and was equivalent to that of a disease-free control group.
Another study compared patients with a newly diagnosed recurrence (n = 69) to those with an initial breast cancer diagnosis (n = 113). Compared to the patients coping with their first diagnosis, patients with a recurrence had significantly lower anxiety and confusion. As expected, physical functioning was poorer among patients with a recurrence, and quality of life improvement was slower during the 12 months following diagnosis (32).
This is not to suggest that women with recurrent gynecologic cancer do not experience difficulties, particularly when disease progresses. Many patients with ovarian cancer, for example, face end-of-life circumstances. In a sample of such patients, Roberts and colleagues (33) found that 39% exhibited acute fears, the most common being fear of abandonment (32%) and fear of social isolation (17%). Taken together, these results suggest that difficult decisions associated with recurrence are made in a context of emotional distress and physical debilitation.
Psychological Interventions for Diagnostic Distress
Severe emotional distress resulting from a cancer diagnosis and the anticipation of treatments can be reduced with psychological interventions. Many randomized controlled trials (RCTs) have been conducted and show efficacy in patients with newly diagnosed cancer (34,35,36). While the majority of trials have been conducted with breast cancer patients and have used group treatments, the findings are applicable to gynecologic patients.
Regarding psychological support, crisis or brief therapy (8-10 sessions) is effective. These interventions involve an assessment of the patient's emotional distress and other difficulties, a focus on the immediate problems facing the patient, and limited therapeutic goals. The therapist is active in making suggestions for coping and problem management. Therapeutic components may include (i) distress reduction, such as providing training in relaxation to lower anxiety and bodily tension and enhance the patient's sense of control;(ii) information about the disease and treatment; (iii) behavioral coping strategies, e.g., role-playing difficult discussions with family or the medical staff; (iv) cognitive coping strategies, such as identifying the patient's troublesome worries and thoughts and providing alternative appraisals; and (v) provision of social support and comfort, which acknowledges the difficulty of the situation and provides a context for the patient openly to discuss her fears and anxieties.
Fewer RCT have been conducted with gynecologic cancer patients, but two recent studies have been reported (37,38). Manne and colleagues (38) compared the efficacy of two psychological interventions, a coping and communication-enhancing intervention (CCI) and a supportive counseling (SC) intervention, in reducing depressive symptoms and cancer-specific distress, to a usual care control. Both the CCI and SC courses were seven sessions long. Results showed that, at 6 and 9 months, women who participated in the CCI and SC groups reported equivalent but lower depressive symptoms than patients receiving usual care only (37).
Scott and her colleagues (38) developed an intervention to improve psychological adjustment for patients and their partners with early-stage breast or gynecological cancer. Ninety-four couples, all married, were randomly assigned to couples-based coping training, individual coping training for the patient only, or a medical education control. The couples intervention was associated with significant gains at 6 and 12 months, compared to the other two groups. That is, couples showed significant improvements in supportive communication, sexual adjustment, and psychological distress, and patients demonstrated improved coping skills (38).
Finally, Petersen and Quinlivan tested the efficacy of a counseling and relaxation intervention on psychological symptoms in 50 newly diagnosed patients. Compared to a no-intervention control, women participating in the six-week intervention showed reductions in anxiety and depressive symptoms, including decreased somatization (39).
For patients coping with depression, multiple trials with non cancer patients have tested the relative and comparative efficacy of the two primary treatments (40): medication (41) and/or psychotherapy (42). Among psychotherapies, the most extensively studied and most successful treatment is Cognitive-Behavioral Therapy (CBT) (43,44). In randomized clinical trials, CBT has generally been found to be as effective as anti-depressant medication (45), even among the severely depressed.
A 2006 report reviewed data on antidepressant medication for patients with cancer and depression (46). The authors found few studies, but concluded that those reported provided some evidence that antidepressants were effective in reducing depressive symptoms in cancer patients. Antidepressants may also enhance adherence to recommended treatment regimens.
Psychological Interventions for Treatment Distress
It is most important for a woman to receive information about the treatment plan for her disease. Despite efforts to allay concerns and provide accurate information, misconceptions abound, and anxiety will remain high as patients approach surgery, radiation therapy, or chemotherapy.
Although there have been few investigations of patients' psychological reactions to cancer surgery, there are numerous descriptive studies of the reactions of relatively healthy women undergoing surgery for benign conditions (e.g., uterine fibroids). This research suggests a direct relationship between the magnitude of preoperative and postoperative anxiety; that is, those patients who are the most anxious before surgery are also the most anxious afterward, albeit less so. In addition, the magnitude of postoperative distress often correlates with behavioral indicants of recovery (e.g., time out of bed, pain reports, days in hospital). In an early study, Gottesman and Lewis noted greater and more lasting crisis feelings and a stronger sense of helplessness among patients with cancer for as long as 2 months after discharge from the hospital compared to patients receiving surgery for benign conditions (47).
Gynecologic cancer surgery may impose unique burdens, with two circumstances being particularly salient. First, women of childbearing age who are nulliparous or have not yet achieved their desired family size may become distraught if the surgery causes loss of childbearing capability. Acceptance may not come for months, and in the interim it may be difficult for the woman to socialize with sisters or female friends who are pregnant or who have young children. Because the age of childbearing among women in the United States has risen, the likelihood of this situation occurring for women with gynecologic cancer has increased. Second, radical surgical procedures, such as radical vulvectomy or pelvic exenteration, which produce genital disfigurement, may produce depression, feelings of isolation, and significant body image concerns (48,49).
Efforts to reduce distress from surgery or to facilitate recovery are typically informational. Detailed descriptions of the procedure, sensations, or side effects and behavioral coping strategies (e.g., relaxation training or distraction exercises for pain management) have proven effective. Prepared patients tend to have shorter hospital stays, use fewer medications, and report less severe pain than patients receiving standard hospital care and preoperative nursing information (50,51). It is hypothesized that this type of preparation reduces stress by helping to build accurate expectations and by enhancing feelings of control and predictability for the patient.
Although there are individual differences, most patients report confusion and negative emotions regarding radiation treatments. Misinformation is common, with some patients fearing permanent contamination of themselves or others from treatment, and other patients assuming that radiation attacks only “bad” cells, leaving others unaffected. A patient's prior knowledge of radiation therapy may be based on the experiences of a friend or relative, and if their treatment was unsuccessful or difficult, she may enter treatment believing it will be the same for her (52).
External beam therapy brings fears or uneasiness about the size or the safety of treatment machines, and often, distress from being in a radiation therapy department where other patients, in obvious ill health, may be. For some women, disrobing and exposing the pelvic area is a daily embarrassment, and field-marking tattoos are visible reminders of the cancer. In one study, roughly 80% of patients expressed an unwillingness to discuss these concerns with their physicians (53). This may occur when patients perceive their physicians as too busy, or patients themselves feel they cannot ask “intelligent” questions of their physicians.
As the procedures of radiation therapy become routine, many patients report less emotional distress, but the side effects of fatigue, diarrhea, and anorexia begin. Side effects complicate living, requiring activity reductions and dietary modifications. Previously symptom-free patients may begin to feel and think of themselves as “ill,” doubting their positive prognosis. Premenopausal women experience hot flashes, a salient and distressing symptom of the loss of their fertility.
At the termination of treatment, these patients might be expected to report a drop in anxiety and fear, similar to the pattern exhibited by relatively healthy people undergoing surgery. Instead, gynecologic patients (54), as well as other patients with cancer (55), report a different pattern of anxiety responses. Women with high pretreatment anxiety are less anxious on the last treatment day than on the first, although they remain the most distressed. Those with moderate levels of pretreatment distress report little diminution in distress by the last treatment, and surprisingly, those with low levels of anxiety at the onset of treatment report significantly greater anxiety on the last treatment day. As expected, physical symptoms of fatigue, abdominal pain, anorexia, diarrhea, and skin irritation are significant for all patients at the conclusion of treatment.
In contrast to external beam, few patients know of intracavitary radiotherapy. Worries about lengthy isolation and permanent contamination are common, and women may cope with the impending treatment by diverting their attention to less distressing thoughts (56). During treatment, women have significant physical discomfort, even when there has been liberal analgesic medication (54). Gas pains, burning sensations, and lower backache are typical, and emotional distress can be pervasive. Visitation restrictions limit contact with family and friends, and this may be frightening to a patient if it is perceived as isolation from nurses or physicians. It is not surprising that many women are irritable and upset during the treatment. Fortunately, low dose rate brachytherapy has largely been replaced by high dose rate therapy in most Western countries, so lengthy isolation is no longer a problem.
A second radiation application is received by 50% to 75% of women. Whereas physicians may anticipate that this might be an easier experience for patients, it is not. In fact, women report feeling more anxious during and are more debilitated after their second treatment. Even women with lower levels of anxiety before their first intracavitary treatment are reported to experience elevated levels of anxiety after their second application (57).
Without assistance, recovery from the physical and psychological distress of radiation therapy is slow. Nail et al. (1986) have documented an incidence of nausea in 5%, anorexia in 15%, diarrhea in 15%, and fatigue in 32% of gynecologic patients treated as long as 3 months previously (58). Complications, such as radiation proctitis or fistulae, can emerge. Decreased lubrication and vaginal tenderness also result in significant sexual disruption during recovery, with lack of sexual interest and dyspareunia being major problems for many women. In fact, a longitudinal study found that sexual dysfunction and adverse vaginal changes persisted 2 years after radiotherapy treatment, with approximately 85% of women reporting low or no sexual interest, and 55% experiencing mild to severe dyspareunia (59).
In view of the commonality, severity, and persistence of sexual dysfunction after radiotherapy, all patients require information on vaginal care and sexuality after radiation treatment. Alterations to the vaginal anatomy, including vaginal shortening and stenosis, begin during the course of radiation treatment (60). Dyspareunia is the most common symptom, and it appears to be most severe among women receiving both external and intracavitary radiation, although patients receiving only external beam also report this symptom (61). A regimen of vaginal care is necessary for all patients to reduce pain and maintain, as much as possible, vaginal plasticity. Psychoeducational interventions designed to enhance dilator treatment adherence are described in the following section. Fortunately, the magnitude of pain during intercourse appears to decrease during the months after treatment for women who maintain sexual activity.
Regarding psychological interventions, patients' descriptions of themselves as anxious, confused, and uncomfortable about expressing such concerns, provide targets for intervention. Patients most vulnerable to distress and most likely to need psychological assistance during treatment may include (55,57,62):
- Those who exhibit relatively little emotional distress before treatment
- Those with a history of emotional problems
- Those with a disease causing chronic discomfort
- Those who are socially isolated
Several strategies may be useful to address the anxiety-based concerns of the patient. General counseling focused on the patient's problems may be offered. For example, Forester et al. (63) provided weekly sessions in which women receiving external radiation could discuss any topic, although most sessions were supportive and informational. Improved functioning was found when these patients were compared with those receiving no intervention; patients receiving intervention reported lower levels of emotional distress and less severe side effects.
Other interventions have primarily provided information. Topics include simulation, radiation equipment, side effects of radiation, length of recovery, and strategies for managing side effects (e.g., diet modification, skin care, adequate rest). Research on patient preparation suggests that such information needs to be simplified and repeated. Instead of providing all information to patients on one occasion at the start of treatment, an alternative is to repeat portions of it as it becomes more relevant. For example, Israel and Mood (64) provided information about therapeutic procedures early in the treatment, about radiation side effects and their management at the midpoint of treatment, and about emotional issues and the length of recovery toward the end of therapy.
To prevent vaginal stenosis, clinical data suggest patients should use a dilator regularly (e.g., two to three times per week for 10-15 minutes). Intercourse may serve as a substitute, however if the frequency is low (i.e., less than once a week), patients should additionally use a dilator. Without adequate support, adherence to dilation therapy may be low. Recent trials (65,66) found increased dilator use among women who participated in psychoeducational interventions. If not contraindicated, topical estrogen cream may promote healing and improve the vaginal epithelium (67). Even with these interventions, pain during intercourse may occur until sufficient healing of the vaginal epithelium has occurred.
Patients' reactions to learning that they need chemotherapy can range from extreme negativity (i.e., feeling angry or depressed) to relief that some kind of treatment is available to them. This mix of emotions reflects distress at having to undergo a difficult treatment, which many believe is only for “hopeless” cancers, and the fear that it will not control the disease. To allay patients' concerns, medical personnel usually provide descriptions of, and written materials about, the effects and side effects of treatment. In spite of this, as many as 10% of patients report uncertainty and lack of knowledge when beginning treatment (68). Others may approach chemotherapy optimistically and believe that they will belong to the small subset of people who do not experience any side effects.
Once any type of information about chemotherapy has been delivered, patient understanding needs to be assessed, because many patients become confused or forgetful when too much information is given. One way to ensure understanding is to ask the patient to explain in her own words what she has been told, as if she were telling her husband or a close friend. This strategy provides an opportunity to reinforce her understanding and to correct any misconceptions.
Patients experience a significant and constant level of distress throughout chemotherapy. As treatment occupies more and more of a patient's life, worries become intrusive, and the intense and noxious side effects generate stronger feelings of illness. Active coping and seeking social support are associated with lowered anxiety and depression, whereas avoidance is positively correlated with both anxiety and depression (69). In addition, women who attempt to control the side effects and fail become more distressed than those who report that they have coped successfully (68).
Anticipatory nausea and vomiting may complicate the course of chemotherapy for approximately 25% of patients. This refers to nausea and/or vomiting before the administration of chemotherapy. It is hypothesized that this disturbing situation develops because the stimuli surrounding the administration of chemotherapy (e.g., needles and smell of alcohol) become paired with posttreatment nausea and vomiting. With repeated cycles, the stimuli become conditioned and are able to evoke nausea or vomiting before the administration of chemotherapy. Once anticipatory reactions develop, they can become more general (e.g., alcohol-containing substances such as perfume may cause nausea), and they occur progressively earlier (e.g., on entering the hospital, rather than on entering the treatment room).
Factors that place a patient at risk for development of anticipatory nausea and vomiting include (70,71):
- Age less than 50 years
- Lengthy infusion and higher doses of chemotherapy
- Severe posttreatment nausea or vomiting in the early cycles
- Extreme anxiety and/or depression
- Previous susceptibility to nausea and/or motion sickness
Additionally, women with higher levels of state anxiety tend to be more susceptible to both anticipatory and post-treatment nausea and vomiting (72).
Another concomitant of some chemotherapy is confusion (“chemo brain”), a distressing symptom for the patient and her family. Pharmacologic effects of chemotherapeutic agents account for some cognitive changes (73), and such changes further emphasize the illness and its consequences to the patient.
In a review of 54 studies investigating the efficacy of behavioral intervention methods, the authors concluded that, in addition to controlling anticipatory nausea and vomiting,interventions integrating several behavioral methods can reduce patients' anxiety and distress concerning other treatments. The review also suggested that, although a variety of behavioral methods have been shown to reduce acute treatment-related pain, hypnotic-like methods, involving relaxation, suggestion, and distracting imagery, hold the greatest promise for pain management (74).
Psychological Outcomes for Gynecologic Oncology Survivors
Cancer survivors may need to cope with the expected but nevertheless troubling permanent sequelae of the disease or its treatment (e.g., menopause, perceived loss of femininity, infertility). This will demand new behaviors or emotional coping methods. From the limited literature on gynecologic cancer survivorship, three trends are evident. First, side effects of treatment (e.g., fatigue, pain, sexual difficulties, and bladder/bowel dysfunction) are common and persistent (8,75,76,77,78,79). Indeed, patients report that physical sequelae from cancer therapy pose the most significant survivorship challenge (80). Second, while overall rates of psychological distress are not exceptional, a significant portion of patients experience psychological maladjustment as survivors (8,76,77,78,80,81). Third, physical sequelae and psychological adjustment appear to co-vary (75,81,82), and are not necessarily mitigated by time in the years following cancer treatment. Nevertheless, data indicate that most patients cope successfully; many report renewed vigor in their approach to life, stronger interpersonal relationships, and a “survivor” adaptation (83,84). Longitudinal data also confirm that, for most, emotions are within the normal range by 6 to 12 months post-treatment (85,86).
A small subset (5% to 10%) may have lingering emotional distress from the trauma of diagnosis, treatment, and more generally, the threat of death. When pronounced, this longterm distress has been likened to posttraumatic stress disorder. In fact, residual distress from the diagnosis and treatment of a life-threatening illness is included as one of the circumstances that may precipitate posttraumatic stress disorder (PTSD) (87). Such reactions are substantial in gynecologic cancer survivors, with symptom rates reported at 19% (76), and may be more common for those undergoing the more difficult of treatment regimens, or those receiving lifealtering and/or disfiguring cancer treatments, (e.g., pelvic exenteration). Patients with a prior history of psychiatric treatment and/or traumatic stress are at increased risk for post cancer PTSD (26), as are patients who report greater rates of unmet supportive care needs (76).
Sexual Functioning Morbidity
The long-term impact of gynecologic cancers and cancer treatments on sexual health is well documented (88,89).While sexual problems may not be a woman's primary concern when she is initially diagnosed, persistent sexual problems are a large concern for most longterm survivors (90). In fact, one study found that women ranked problems with sexual arousal as the most distressing of their cancer treatment-related symptoms (91).
Most health care professionals are aware of the likelihood of sexual difficulties for their patients. Unfortunately, assessment, treatment, or referral for treatment is uncommon.Stead and colleagues (92) interviewed 43 physicians and nurses regularly treating women with ovarian cancer, and while 98% reported that they felt sexual issues should be discussed with patients, only 21% reported actually doing so. In order to orient readers, a description of unimpaired sexual responding and DSM-IV definitions of sexual dysfunctions are provided. Next, research describing sexual morbidity among gynecologic oncology patients is presented. Finally, an overview of treatments potentially available for patients referred for sexual therapy is given.
Description of Sexual Response Cycle and Sexual Dysfunctions
Sexual desire is the least understood of all the phases of the sexual response cycle. It has been conceptualized as a drive or motivation for sexual activity. Androgen is hypothesized as providing the hormonal basis for sexual desire in women, as suggested by experimental studies of women without cancer but undergoing surgically induced menopause (93). Data suggest that exogenous androgen may enhance the intensity of sexual desire and arousal, but estrogen may have no effect.
The diagnosis “inhibited sexual desire” characterizes those people who report that they are usually uninterested in sexual activity. Such an attitude can be manifest by avoidance of sexual contacts, refusal of sexual activity, or infrequent initiation of sexual activity. Inhibited people report an absence or low frequency of sexual fantasy or other pleasant, arousing sexual thoughts. People with sexual desire dysfunction may, however, experience sexual excitement and/or orgasm when engaging in sexual activity. However, disruption in the focus, intensity, or duration of sexual activity is typical with desire disorder, with accompanying disruption of arousal and/or orgasm.
The phase of sexual excitement begins with psychological or physical stimulation. Physiologic responses that occur during the excitement phase include vaginal engorgement and lubrication. Maximal vasocongestion produces a congested orgasmic “platform” in the lower one-third of the vaginal barrel.
Dysfunctional sexual excitement would include insufficient response so that penetration during heterosexual intercourse would be difficult or uncomfortable. Psychologically, a woman may report that she does not feel aroused and/or that her body is not responding. As with desire phase difficulties, subsequent orgasmic disruption could easily result from lowered levels of excitement.
Although the specific neurophysiologic mechanism of orgasm is not known, it has been proposed that orgasm is triggered when a plateau of excitement has been reached (94). Subjectively, a woman's awareness of orgasm typically focuses on pelvic sensations, centered in the clitoris, vagina, and uterus. Orgasm is marked by rhythmic contractions of the uterus, the orgasmic platform, and the rectal sphincter. A woman's awareness of orgasm is reported to be similar, regardless of the manner in which it is achieved (95).
Orgasmic disorder in women (formerly known as inhibited orgasm) is the persistent or recurrent delay in, or absence of, orgasm following a sexual excitement phase. There is great variability amongst women in terms of type and intensity of stimulation that triggers orgasm. Diagnosis should take into account this individual variability, as well as consideration of age, sexual experience, and the adequacy of sexual stimulation.
If effective stimulation ends and/or orgasm occurs, the anatomic and physiologic changes that occurred during excitement reverse. The orgasmic platform disappears, the uterus moves back into the true pelvis, and the vagina shortens and narrows. Such bodily responses after orgasm usually are accompanied by subjective feelings of tension release, relaxation, and contentment. If orgasm does not occur, the same physiologic processes are completed at a slower rate.
Women with excitement or orgasmic dysfunctions typically report discontentment with the resolution period as well, with symptoms of continued pelvic vasocongestion, residual sexual tension, lack of satisfaction, and/or negative effect. Complaints with resolution after unimpaired excitement and orgasm are infrequent; when they occur, they may be prompted by inhibitory affects, such as guilt or marital discord, that are associated with sexual activity generally.
Description of Sexual Morbidity
When queried about sexuality, women with cancer indicate that these are important concerns that need to be addressed (48,49,96,97). This is not surprising as 30% to 90% of patients experience significant sexual disruption. The physical and physiological changes from cancer treatments may alter a woman's body image, as well as her perception of herself in the sexual domain (sexual self schema). Women may feel that their treatments have caused a loss of femininity, and may also have to deal with early loss of fertility. This may be particularly detrimental for nulliparous women, or those who were planning to have children in the future. Some women may also fear contaminating their partner(s) through intercourse, especially during radiation treatments. They may also fear that sexual activity will make treatments less effective, or cause the cancer to spread (98).
An early comprehensive study of sexual dysfunction in women with gynecologic cancer comes from Andersen et al. (12,13). Women with clinical stage I or II gynecologic cancers (n = 47) were compared with two matched comparison groups: women treated for benign gynecologic disease (n = 18) and gynecologically healthy women (n = 57). All women were assessed after diagnosis but before treatment and then reassessed 4, 8, and 12 months after treatment. The frequency of intercourse declined for women treated for disease, whether malignant or benign. Considering the sexual response cycle, diminution of sexual excitement was pronounced for women with disease; however, the difficulty was more severe and distressing for the women with cancer, possibly because of significant coital and postcoital pain, premature menopause, and/or treatment-related side effects.
Changes in desire, orgasm, and the resolution phase of the sexual response cycle also occurred. In approximately 30% of the women treated for cancer, a sexual dysfunction was diagnosed. Table 25.1 provides a summary of the rates of sexual dysfunction 12 months after treatment. In all cases, the rates of dysfunction were 2 to 3 times those found among healthy women. The nature, early timing, and maintenance of sexual functioning morbidity suggest the instrumental role that cancer and cancer treatments play in these deficits (particularly arousal problems).
Gynecologic cancers are treated with some combination of surgery, radiation or chemotherapy. Below is a brief review of the impact of each specific treatment.
Table 25.1 Sexual Dysfunction Diagnoses According to Gynecologic Conditiona
Surgical Procedures. Women with cervical or endometrial cancer may undergo surgery which can shorten the vagina. For premenopausal patients with ovarian or endometrial cancer, oophorectomy will lead to sexually relevant menopausal symptoms (e.g., vaginal dryness). Surgical treatment for vulvar cancer drastically changes genital appearance and structure, which can entail body image changes.
Radiotherapy. Radiotherapy, particularly intracavitary radiation, can result in vaginal atrophy, shortening, stenosis, and reduced tissue elasticity. Women undergoing radiation should use a dilator to prevent or ameliorate some of these symptoms. Ovarian failure is also likely.
Chemotherapy. During chemotherapy, loss of sexual desire is common. Chemotherapy can also cause ovarian failure among patients nearing the age of menopause.
Sexual morbidity persists long into gynecologic cancer survivorship. In a recent study, Carpenter et al. (98) examined sexuality in a sample of 175 gynecologic cancer survivors 2 to 10 years after initial treatment. Sexual morbidity was prevalent, with the majority of patients reporting sexual responsiveness scores at least as low as those reported by women seeking treatment for sexual dysfunction. Despite these sexual difficulties, most resumed intercourse at rates comparable to available norms for similarly aged women (100), but sexual satisfaction and responsiveness were significantly impaired following treatment, consistent with prior research (101,102,103,104). Taken together, these data suggest that resumption of sexual intercourse is not necessarily an adequate marker for improved sexual health and that assessment of sexual difficulties following gynecologic cancer treatment requires a more comprehensive approach.
Assessment of Sexuality/Sexual Functioning
A brief sexual history should be obtained from all patients before treatment. Obtaining a sexual assessment can achieve three goals:
- It identifies sexuality as an area of well being that the medical team considers important.
- It provides the healthy baseline data necessary to evaluate any future changes in sexual functioning. Retrospective reports are subject to reporting biases.
- It provides an informed context for future discussions about sexuality between the patient and the medical team.
A pretreatment sexual history is best obtained by questioning the patient directly. Questionnaires can be used to assess such topics as sexual behavior (96,105) or sexual arousal (12). Even for the older woman or the woman who is not currently sexually active, such information is desirable. The most important determinant of the frequency of sexual activity for a woman is the presence of a healthy and interested sexual partner, not age (106). Women who are not currently sexually active may wish to be so in the future and need to know how their functioning may be changed. The following areas are important:
- Marital status and availability of current sexual partner(s)
- Body image concerns
- Frequency of sexual activity (intercourse or an equivalent intimate activity)
- Presence of current female sexual dysfunction (e.g., lack of desire, orgasmic difficulties)
- Presence of current sexual dysfunction in the partner (e.g., premature ejaculation, erectile difficulties, sexual difficulties secondary to medication usage)
If the sexual problems resulting from gynecologic cancer and its treatments are to be minimized, a significant investment of time, energy, and resources is necessary. There are at least three components that are essential in a sexual functioning intervention: (i) information about sexuality (e.g., male and female sexual anatomy, the sexual response cycle, sexual dysfunctions, and potential sources of difficulty after cancer treatment); (ii) surgical or medical interventions (e.g., hormonal therapy, reconstructive surgery); and (iii)specific sexual therapeutic suggestions. Because institutions differ in the services they are able to provide, a system for intervention development is described.
Preventing Sexual Morbidity: Information
Physicians and nurses need to be familiar with the potential sexual outcomes for patients with gynecologic cancer. In the study by Stead and colleagues (92), reasons clinicians listed for not discussing sexual sequelae included lack of knowledge and experience with such information, embarrassment, and lack of resources to provide support if needed. The acquisition of such knowledge is crucial for the gynecologic oncology service provider; it is best if this information is part of a broad understanding of normal female sexual function and response. Patients make few inquiries, despite their concerns, so care providers need to initiate discussion of sexuality topics and provide information to all patients. When questions do arise, an informed and understanding response encourages future discussion.
Departments caring for patients with gynecologic cancer need a plan for providing psychosexual assistance. For the individual patient, preventive rather than rehabilitative efforts are desirable. This should include the routine provision of sexual information to patients (81). Longitudinal data indicate that if sexual difficulties develop, most are evidenced in the early months of recovery (107); therefore, information should be provided before and immediately after treatment, as patients resume sexual activity.
Information per se is an important component of sexual therapy interventions (108). Gamel and colleagues provide a review of the nature and timing of information that should be provided to gynecologic cancer patients (109). At the time of diagnosis and treatment, patients should be well informed of the potential direct effects that the treatments might have on sexuality, such as changed general health (e.g., chronic fatigue), structural changes to the genitalia, hormonal changes, and interference with the physiologic components of the sexual response cycle. During extended recovery, health care professionals should discuss the long-lasting sexual complications, and strategies for overcoming them. Although sexual problems for most patients with gynecologic cancer are more difficult to treat than those of healthy women, such information aids in preventing problems resulting from ignorance or misconception and potentially decreasing the severity of problems that arise from other factors.
Reducing Sexual Morbidity: Medical Therapies
Specific medical interventions may enhance sexual functioning for selected patients (110,111). For example, hormonal medication may be used for menopausal symptoms; a Fenton's operation may be necessary to treat introital stenosis after vulvectomy. All patients with vaginal dryness should be instructed to use lubricants during vaginal intercourse. Dilator therapy should be prescribed for all patients receiving radiotherapy. Despite these efforts, certain sexual activities may remain difficult. If vaginal stenosis is severe, patients and partners may need to reorient themselves to a sexual lifestyle that does not include vaginal intercourse.
Treatment for Sexual Morbidity: Behavioral Sexual Therapies
Patients with significant sexual difficulties should be referred to a professional (usually a Ph.D.-level clinical psychologist) who is trained broadly in sexual therapy and familiar with the specific difficulties of the patient with gynecologic cancer. Unfortunately, there have been few clinical (112,113,114), or empirical (38,109,115,116) reports of sexual therapies for cancer patients. Some interventions have provided brief counseling to patients with gynecologic cancer on a variety of topics, and these often include a sexuality module (115,117). A handful of interventions specifically addressing sexuality have applied strategies from established psychotherapies, such as Cognitive Behavioral Therapy (CBT), mindfulness training (114), sex therapy (112), and couples therapy (38).
Results of these studies have suggested the effectiveness of psychotherapies in ameliorating sexual functioning after gynecologic cancer. For many patients, behaviorally oriented sex therapy offers the most promise for change. Behavioral therapies can target the specific sexual problems of the patient. The sections below provide information and examples of the therapies for specific sexual problems.
Problems of Low Sexual Desire
In the treatment of desire problems, a careful determination of cause is important. Desire problems commonly occur in the earliest months of recovery. Therefore, a lack of desire may not be a problem but, rather, evidence of a normal, prolonged recuperative process.
Interventions for desire problems include the following:
- Determining what conditions for sexual activity are more or less appealing, and encouraging sexual activity under the most desirable circumstances.
- Increasing the frequency and variety of intimate activities that the woman might find pleasurable.
- Increasing the frequency and variety of the woman's sexual fantasies during sexual activity and on other occasions.
Problems of Low Sexual Arousal
Interventions to enhance arousal include the use of individual and couple body-touching exercises (i.e., sensate focus) and mindfulness training. Graduated steps for sexual activity are suggested to the woman or to the couple, with each stage using more intimate touching and higher levels of arousal. For example, the couple's sensate focus could involve steps that include caressing of hands, arms, and face; caressing the whole body without genitals, breasts, or buttocks; caressing whole body without genital stimulation; caressing the whole body; and, finally, caressing the whole body with focused stimulation.
Individual masturbatory activities can be designed for the patient according to the same principles. Although activities such as these are useful for all couples, they are particularly important for women who are unable to resume intercourse. Such graduated activities have several potential benefits:
- They can reintroduce relaxing and enjoyable sexual activity to a woman or a couple. This is important because many patients come to sexual therapy after repeated frustrating, discouraging, or unsatisfactory sexual encounters.
- The activities are not strenuous, which is helpful to the woman who is not fully recovered or who tires easily.
- The activities do not focus on a particular area of the body, and one objective is to find new, previously unexplored areas or methods of stimulation.
- Touching an area affected by treatment can be eliminated or introduced gradually.
Such a strategy can be less anxiety provoking for a woman and her partner. Also, both partners can learn what sensitivity, if any, remains in body areas changed by treatment. Some areas have sensations similar to those present before cancer treatment, whereas others may feel unpleasant to the touch. Some couples may prefer not to explore certain areas. When this is done in the context of sensate focus exercises, other areas remain for touching, and a loving, sexual relationship can prevail, rather than a rejecting or anxiety-provoking one.
It is important that the patient treated for gynecologic cancer be aware that the origin of her sexual difficulties is “in her body” and not “in her head.” That is, sexual morbidity is likely to be due to nerve damage or the structural changes imposed. Women report that their bodies do not feel aroused; concurrently, they report few arousing feelings or thoughts (19). Also, normal excitement responses are disrupted with treatment side effects. For example, dyspareunia is a common problem after radiation therapy because of direct damage to the vaginal epithelium, decreased vascular engorgement, and reduced vaginal lubrication. Such causal explanations are important for patients to receive and, thereby, may prevent patients from feeling guilty or responsible for their post cancer sexual difficulties.
Problems of Negative Sexual Reactions/Responses
Women may, understandably, react negatively to their changed bodies after radical surgery—such as vulvectomy or pelvic exenteration—although the same reactions can occur for any person with cancer (118). Extreme responses may include disgust or anxiety when looking at the site and fear of being seen by others. Many healthy women with sexual difficulties or anxieties have similar feelings. For such women, treatments for anxiety-reduction, particularly systematic desensitization (119,120), individual sensate focus exercises (121,122), and mindfulness training (90), have proven effective.
A focus on couples' communication has also been found to significantly enhance patients' perceptions of their partners' acceptance of their bodies (38). Although such interventions may not change a woman's negative body feelings to positive, an attainable goal is for the feelings to become neutral, or at least nondisruptive, to her sexual activities and overall mood.
Resuming Sexual Intercourse
The graduated sexual activities described above provide a relaxing and sensual context in which intercourse can be resumed. Although there is no “correct” intercourse position, there may be positions that are more comfortable for the woman recovering from cancer treatment. If the patient tires easily or needs body support, the male superior position is the least strenuous for the woman. In contrast, if a woman is having pain with intercourse (e.g., after intracavitary radiation), it is important that she have control over the depth of penetration and the rate of thrusting. In this case, the female superior position is often optimal. If this position does not provide relief from pain and a longer period of healing is necessary, couples must be told to wait and enjoy other intimate activities.
Women should be using a vaginal dilator regularly when intercourse is not possible. In addition to keeping the vagina “open,” the dilator exercises provide a source of feedback to the woman regarding the degree of persistent vaginal discomfort (66). This information helps her to decide when it might be most comfortable to resume intercourse.
Among patients with cancer, the typical difficulty is a dramatic decline in frequency of orgasm or a failure of orgasm to occur. This problem is typically accompanied by the excitement difficulties described previously, so that the woman feels she does not become sufficiently aroused to approach the plateau necessary for orgasm.
Orgasmic dysfunction among women after gynecologic treatment is common. The difficulty is typically acute, with disruption occurring immediately after treatment. This difficulty can be pervasive, even to the extent that a woman who was regularly orgasmic with coital activity before treatment becomes nonorgasmic. With this pattern, it is likely that the difficulty is a result of altered structure or innervations. For some women, orgasm may occur intermittently and be more difficult to achieve. Before beginning a treatment program for orgasmic difficulties, it is important that other reasons for orgasmic difficulties be assessed, including insufficient arousal or dyspareunia.
The most successful treatment for nonorgasmic women includes a series of individual sexuality and masturbation exercises. The treatment consists of several graduated exercises extending across several weeks. Activities are body touching, identification of genital anatomy, actual body and genital self-examination to identify pleasurable sensations, and finally, focused genital stimulation. Even though pelvic or genital anatomy after cancer treatment is changed, it is possible that orgasm can still be experienced through other means, because women can experience orgasm without genital stimulation or without specific organs such as the clitoris, once believed critical to the response.
If the woman is motivated to undertake treatment, the exercises are completed with conscientious effort, and orgasm does not occur, the change in orgasmic ability may be long-standing. Even in this case, the exercises may help the woman to take a more active role in her sexuality, give her an improved body concept, and allow her to discover new modes of experiencing sexual pleasure (51,123).
Problems During Resolution Phase
Sexual dysfunction or difficulty during resolution is seldom noted in healthy women. However, disruption during this phase is common among women with gynecologic cancer.Sources of difficulty may include residual pain if there has been dyspareunia or continued arousal from lack of orgasm. The most straightforward remedy to such problems is enhanced functioning during earlier phases of the sexual response cycle so that the resolution period is satisfactory. However, for those women with permanent sexual changes, efforts should be made to counteract feelings of discouragement, “letdown,” or continued tension that might predominate a woman's view of her sexual functioning during the resolution phase. The woman should be reoriented to focus on the positive aspects of her sexual life, such as the continued ability to engage in sexual activity, the experience of physical closeness and intimacy with her partner, and the sharing of alternative sexual activities with her partner.
New Sex Therapy Techniques
In addition to those discussed here, new treatments are needed. For example, a 2006 study found mindfulness training to be effective in treating sexual dysfunction in gynecological cancer patients (90,114). Also, biofeedback has had some utility in the treatment of sexual dysfunctions and has been important in the area of physical rehabilitation. It has been used to enhance sexual arousal in healthy women (124) and sexually dysfunctional women (125), and as a treatment for dyspareunia (126). For gynecologic cancer patients, it might have some role, for example, in providing feedback during masturbatory treatment of women who have had radical genital surgery. Structural or neural changes may be such that women are not able to perceive the low level of genital sensation generated, and biofeedback may provide the necessary amplification.
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