Female Sexual Function and Dysfunction

Chapter 9. Female Sexual Life During Malignancies

Donata Villari

Nevertheless

The bookbag on my back. I'm out the door.

Winter turns to spring

The way it does, and I buy dresses.

A year later, it gets to where When they say How are you feeling,

With that anxious look on their faces,

And I start to tell them the latest About my love life or my kids' love lives, Or my vacation or my writer’s block- It actually takes me a while To realize what they have in mind- I’m fine, I say, I’m great, I’m clean.

The bookbag on my back, I have to run.

Alicia Ostriker

from

The Crack in Everything.

University of Pittsburgh Press, 1996

We do not have a body; we are our body. Our body is our self.

Usually, when we are well, we are not aware of our body, and we exist (from the Latin ex-sistere) on top of, intent on, and involved in the world. Through the body, in one way or another, we are projected into the world.

In sickness, this project is interrupted, and the body comes into the foreground, announcing its presence with pain and discomfort.

Cancer shuffles the cards. It creates a deep fracture in our being. The body, out of which we look at a horizon, becomes our horizon. It is a horizon marked by medical appointments, surgical interventions, diagnoses, and treatments. In more serious pathologies, especially in the last phases, which lead inevitably to the end of life, our existence is no longer projected into the world; rather it becomes an “insistence” inside our body, to the point where we sink into it.

The Cartesian mind-set has habituated us to a dichotomy between mind and body, psyche and soma. The body is not a living body but a “body thing” that the mind observes from outside. In the terms used by the German philosopher Karl Theodor Jaspers, this body thing is the corp, while the living body is the leib. But the leib is nothing but the body that relates us to the world and to others and which identifies our life as an unrepeatable fact. And the psyche is also the body, in the indivisible unity that we call the bodily self. And if the psyche is the set of emotions, thought, and perceptions that signify our relationships with others, the world, and our own subjectivity, it is impossible to understand it as separate from the living body.

Thus, illness is in any case always psychosomatic - if not in its causes - at least in its course. So we might say that every person has her/his own illness, whose symptoms are not only signs but also meanings that are part of our biography, expressed in the biography of our body, like our life and our death.

This is why it is important in the treatment of cancer to respect subjectivity, to avoid the homologation and the alienating anonymity all too often proposed and imposed by treatment: not to consider the body as object to be analyzed, classified, subdivided into specializations of organs and diagnosed by infinite deindividualization, but rather as a body “subject,” made whole again through the concept of harmony in treatment.

This harmony includes the acceptance of limit, the dialogue with death, and the restructuring of the meanings of one’s existence. Thus, confrontation with limit and with pain guides us toward acceptance, but also toward the courage to fight for a return to enjoying the world, to pull ourselves out of disease and adversity as far as possible, governing ourselves with measure and harmony.

It is this context that we feel should frame our discussion of the question of female sexual dysfunctions in the course of oncological diseases.

9.1 The Dimensions of the Problem

Cancer is a worldwide problem, though its global distribution is not uniform [1]. One significant finding that comes to the fore is that women tend to develop neoplasms in a smaller percentage than men. Besides depending on a different lifestyle or hormonal influences, this could be due to the fact that the female immune system is more effective and developed [2], though it is also more susceptible to autoimmune diseases.

It is estimated that in the USA today there are over 13 million persons with a past history of cancer [3]. Fifty-four percent of them are women, and this number is destined to increase. Breast cancer is the prevalent form (41 %), followed by gynecologic cancers (cervix, endometrium, ovary, tube, vulva and vagina) and lastly by cancer of the colon/rectum (9 %) [4].

In 2015 in Italy, not counting skin cancers, almost 366,000 new cases of malign tumors will be diagnosed (approximately 1,000 a day), of which roughly 196,000 (54 %) in men and roughly 169,000 (46 %) in women. Among women, breast cancer is the most frequent, representing 29 % of all tumors, followed by cancers of the colon/rectum (13 %), lung (6 %), thyroid (5 %), and body of the uterus (5 %). Considering the prevalence data as of 2010, it is estimated that roughly 2,250,000

persons (who represent over 4 % of the resident population) living in Italy have previously been diagnosed with a tumor. Of these subjects, almost 1,000,000 are male (44 %) and roughly 1,250,000 female (56 %). The especially high percentage of women with past breast tumors (over 1/5 of all cases prevalent in both sexes) helps to explain the greater presence in the population of women with cancers than of men (66 % of the total prevalent cases) [5].

The incidence of female sexual dysfunctions with oncological causes is certainly greater in countries where the incidence of neoplasia is greater, and it is precisely in these countries that more resources have been invested and more studies carried out concerning this aspect of the quality of life with easier diagnosis.

Women who have had breast cancer make up 23 % of all cancer survivors [6]. Yet there can be no doubt that female sexual dysfunctions represent an underestimated condition in oncology and one that has been less studied than, for example, the aftermath of prostate tumors in men, despite the fact that the average age of onset is far higher in men [6]. There are many reasons for this. All too often the treatment and control of a carcinoma are the only objectives taken into consideration. In a high percentage of cases, it is the physicians themselves, in this case the oncologists, who underestimate the problem and do not give it the time and attention it calls for, also because they are not adequately prepared to suspect, diagnose, classify, and properly treat this condition [7].

This “disattention” on the part of the medical profession is generally attributed to lack of time, so that it is not infrequent for even gynecologic oncologists to fail to perform a careful anamnesis of the sexual life of their patients at the first examination [8]. Similarly, patients undergoing pelvic radiotherapy are not always adequately informed about possible side effects on their sexual life [9]. Women themselves often do not find the courage to ask questions that make their sexual life the focus of the attention of medical staff [10], and this is especially true for older women. We must also bear in mind that fewer than one third of women in the general population who suffer from disturbances linked to some type of sexual dysfunction report this to their doctor [11]. It is therefore opportune for the doctor himself/herself to introduce the subject with naturalness and competence and using clear, explicit language [12].

Nowadays we have finally understood how important it is to focus on this problem, and it has become an essential part of an integrated approach to the treatment of the growing cancer survivor population. To this end, in 2010 a national interdisciplinary network of over 100 doctors, specialists and researchers was instituted in America (National Network), with the precise goal of the prevention, treatment and support of women and girls who suffer from cancer-related sexual dysfunctions [13].

In order to acquire a comprehensive clinical history of their sexual lives and associated problems from our patients before starting any sort of therapeutic treatment, we need not only time but also multidisciplinary competence, empathy and communicative capacity, as well as specifically trained medical personnel. Cancer care providers should also be sure to bring up the “issue” of sexuality with older patients and with those who do not have a fixed partner and to take into consideration the possibility that their patients’ sexual lives may involve same-sex partners.

The use of validated questionnaires is crucial for diagnosis and monitoring. Among the many available, one frequently used in clinical studies of cancer populations is the Sexual Activity Questionnaire (SAQ). This is a 14-item self-report inventory [14] that takes about 10 minutes to complete. It inquires into the level of existing sexual activity, sorts out the reasons for possible inactivity, and characterizes the sexual behavior of patients using three categories (pleasure, discomfort, and habit). It has also been employed in a study comparing lesbians and heterosexual women with a recent diagnosis of breast cancer [15]. The Female Sexual Function Index (FSFI) (a 19-item self-report measure) has been used especially in the study of gynecologic cancers, breast tumors [16] and patients who have undergone radical cystectomy [17].

9.2 Cancer and Sexual Dysfunction

The diagnosis of cancer is the first, critical moment, which causes in hearers feelings of incredulity, fear, and insecurity about their future. Its reverberations also affect the partner, if there is one, who in turn may suffer from preexisting sexual dysfunctions [18, 19].

As is logical, in the past studies on cancer and sexual dysfunction were at first focused on cancers directly or indirectly involving the sexual and reproductive organs. Later research has widened out to include sexual dysfunctions in oncological patients regardless of the seat of the original neoplasia [20].

As can be imagined, gynecologic and breast cancers are those that most frequently have a negative impact on a woman’s sexual health. The surgical treatment undergone by these patients creates direct anatomical damage and distorts their body image, causing them to perceive their body as sexually unattractive. This in turn creates changes in the response to the stimuli that influence desire, with inadequate vaginal lubrication and genital swelling that in the end lead to less frequent sex, with the absence of well-being, pleasure and sexual satisfaction, and consequent inability to reach orgasm [21].

A paradigmatic example is represented by premenopausal salpingooophorectomy, which leads to the physical and hormonal changes typical of early menopause, seen in the various domains that characterize female sexual dysfunctions as they are currently classified [22]. Besides the aftermaths of surgery, more and more frequently multimodal protocols also consider the consequences of chemo and/or radiotherapy, which can continue to have negative effects after many years. Cancers apparently “distant” from the parts of the body associated with sexuality constitute a separate question. Examples are head and neck tumors, which by causing significant facial alterations (disfigurement), vocal changes (speech), and changes in breathing and salivation, can have a strong impact on self-esteem and therefore on interpersonal and couple relationships [23].

But there is no doubt that there are many other neoplastic sites with a direct negative impact on the sexual lives of men and women, whether as a consequence of primary surgical treatment or of related pharmacologic, radiation, or biological treatments. Among these are colon/rectal tumors [24], those of the head and neck [25] and of the bladder [26], lymphatic cancers [27], and lung cancers [28].

9.3 Breast Tumors

Breast tumors represent the most frequently diagnosed carcinoma in women in the USA and in industrialized countries in general [28]. Around 12.4% of new cases develop in reproductive age, under 44 years old, and 22.6 % in perimenopausal age (between 45 and 54). In the majority of cases, therefore, the diagnosis occurs at an age in which these women are sexually active. As a matter of fact, it is not infrequent that a mammary tumefaction is first discovered by the partner during sexual activity [6].

Treatment consists in mastectomy or conservative surgery followed by radiotherapy. A recent study has shown that women who have had a radical mastectomy followed by reconstruction are less subject to deterioration of their sexual lives than those who have undergone either mastectomy without reconstruction or conservative surgery [29].

Surgical treatment may or may not be followed by adjuvant chemotherapy. A 2005 meta-analysis shows that anthracycline-based protocols are associated with higher toxicity (cardiotoxicity, leukopenia, nausea, vomiting, and alopecia) and also with loss of pubic hair [30]. Cyclophosphamide, methotrexate, and fluorouracilbased regimes cause precocious bleeding and possible amenorrhea within the first year, along with a high risk of infertility. Instead, the use of taxane determines sensory and motor neuropathies at the extremities, which can be correlated to some degree to alterations of clitoral and vulvar sensitivity [31].

When radiotherapy is used, it can have negative effects on the outcomes of reconstructive surgery, which can be esthetically unsatisfactory. Moreover, estrogen modulation and deprivation (through the employment of tamoxifen or LHRH analogues) play an important role in therapies for forms of hormone-receptor-positive breast cancers, seeing as almost one fourth of new diagnoses of breast tumor involve women in pre- or perimenopausal age [32].

As can be easily imagined, therefore, all these therapies and modulations strongly impact the sexual lives of patients, above all through endocrinological manipulation that determines a “menopausal” state as a consequence of estrogen deprivation [33]. The most frequent symptoms are, therefore, vaginal dryness, pain during penetration, fall in or lack of desire, and inability to reach orgasm. Added to these is a state of anxiety about relations with the partner. Some authors report a percentage as high as 76 % of sexual dysfunctions discovered through the use of the FSFI questionnaire [34].

9.4 Cancer-Related Pelvic Surgery and Female Sexual Dysfunction

The female pelvic area is often involved in radical surgery in cases of carcinomas that interest the reproductive and genital organs or that develop in the bladder, colon, or anus.

9.4.1 Gynecological Cancer

Roughly 76,500 new cases are diagnosed each year in the USA. The treatment of patients affected with gynecological tumors has important physical, psychological, and social consequences that have a negative impact on their sexual and relational life in 30-100 % of cases [35]. The consequences are the physical ones directly linked to hormonal changes, to the removal of sexual organs (uterus, tubes, ovaries and/or cervix, vulva) [36], and to nerve deterioration, in addition to damage caused by radio- or chemotherapy. There are also psychological repercussions that lead to anxiety, depression, and problems in communicating with the partner [36].

9.4.2 Bladder Cancer

This is the fourth most frequent neoplasia in the USA, with roughly 70,000 new cases diagnosed annually [37].

Radical cystectomy followed by external urinary diversion or by reconstruction of an orthotopic neobladder represents the gold standard for muscle-invasive forms [38]. In cases where it has not been possible to reconstruct a neobladder that allows the patient to urinate “per urethram,” the presence of one or two urostomy bags undoubtedly causes a dramatic change in the patient’s body image, with consequent strong emotional impact [39].

This carcinoma generally appears at a later age in women and often involves a more negative prognosis, leading to lower cancer-specific survival [40]. Existing literature focuses mainly on male erectile dysfunction, though some partial data concerning women, based on a limited study sample, do exist [18]. Among those who define themselves as sexually active before surgery (87 %), only 37 % declare that they are afterward [17]. The literature on non-muscle-invasive forms, which represent up to 75 % of the incidence of all bladder tumors [41], is even scantier. In 62.5 % of cases, patients report vaginal dryness and in 23.2 % (of both men and women) fear of contaminating the partner either with their disease or because of intracavitary therapies used after endoscopic resection [25].

9.4.3 Colorectal Cancer and Colostomy

The literature chiefly analyzes strictly surgery-linked consequences regarding genitourinary functioning in both men and women [42]. But the crucial influence on the quality of patients’ life after surgery is colostomy, which is the most evident and incapacitating aftermath they have to deal with. Patients, in our case women, must be instructed and assisted in managing the doubtlessly undesirable effects of external derivation by using simple strategies to neutralize or minimize smells, gas, and diarrhea - for example, by planning sexual intercourse at a time when the stoma is empty [43, 44].

9.5 Radiotherapy and Female Sexual Dysfunction

Radiotherapy plays an important role in the treatment of rectal, anal, bladder, cervix, and vulvar carcinomas, as well as in breast cancers. It can be administered as primary, neoadjuvant, or adjuvant treatment. Damage occurs to the organ treated, the vessels, and the nerve plexus. What is more, the fibrosis that follows treatment can cause intestinal and ureteral stenosis, pelvic and lower limb lymphedema, endothelial damage, inflammation, ulcers, ischemia, and necrosis with the formation of fistulae that are not always easy to cure [45].

Where there has been massive irradiation of the female pelvis, as, for example, in carcinomas of the cervix, the ovaries undergo a temporary or permanent block of their functional capacity. In premenopausal age this determines the sudden appearance of hot flashes and vaginal dryness. In younger women who have undergone less drastic radiation therapy, as, for example, in the course of treatment for Hodgkin’s disease, this condition can be temporary. The woman can become fertile again thanks to the survival of primary follicles that show modest or no proliferation of the granulated cells at the time of radiotherapy.

It is evident, therefore, that below the threshold of 50 years, careful counseling is strongly advised in order to help the patient decide whether or not to interrupt any method of contraception currently being used, knowing that sterility frequently follows this treatment.

Reduced ovarian reserve is also found in survivors of radiation or chemotherapy undergone in childhood. This determines a shortening of the reproductive life span and the onset of early menopause [46].

The damage caused by radiation therapy is progressive and can become symptomatic after a period of latency. The total dosage of radiation administered has a harmful effect on the intestine, the bladder, and the genital organs. In women, bleeding and reduced elasticity of the vaginal walls and the vulva are often reported. These become thin and fragile, and there can be pain and dryness. Due to subsequent scarring, the vagina can become narrower and shorter. This can lead to fear of having sexual relations, with psychological repercussions [47, 48].

The use of vaginal estrogens can help to lessen the effects of radiation therapy by facilitating epithelial regeneration. The regular use of vaginal dilators and fairly frequent sexual relations can also help counter undesirable aftermaths. It should be kept in mind that maintaining adequate vaginal capacity is also important to facilitate oncologic-gynecologic follow-up. However, the use of dilators can be felt as intrusive and can create considerable emotional and relational problems. Medical personnel must be able to deal with these problems positively, giving support to the patient not only in learning how to manage this technique but also in case of possible psychological effects [49].

Up to 28 % of patients report a persistent reduction in lubrication 2 years after treatment [50]. The use of local vaginal estrogens can lessen irritation, facilitating epithelial regeneration.

Bladder functioning can also be affected by radiation therapy, causing frequency, urgency, or vesical instability [51].

Radiation also represents an important component of the therapy used for colon/ rectal tumors. A high prevalence of sexual dysfunctions is reported in the literature even when care has been taken to spare nervous structures during surgery [52].

The percentage of sexually active women, over 51 % before surgery, falls to 32.5 % in the 3 months following it and to only 18.4 % after 2 years. In an interesting longitudinal analysis, preoperative radiotherapy represented the only significant risk factor [53].

9.6 Chemotherapy and Female Sexual Dysfunction

As well as the abovementioned symptoms related to the onset of early menopause, numerous antiblastic agents have an irritating effect on the mucous membranes. In particular, the vaginal lining is subject to thinning, dryness, and susceptibility to microtraumas. Weakening of the immune system can determine the risk of infections, including sexually transmitted ones, and a flare-up of genital herpes or genital warts. The general tiredness and nausea that characterize these therapies influence mood and sexual desire. Women are uncomfortable with their body image, feeling themselves “unattractive” to their partner. The perception of their bodies as mutilated contributes to this, as do loss of hair (especially eyebrows and pubic hair), weight loss, or vice versa weight gain due to corticosteroid-based therapy, lessening of the muscle mass, and the presence of infusion catheters or ostomy appliances.

Conclusions

Thanks to the use of multimodal treatments, early diagnosis, and new therapeutic frontiers, patients with a past history of cancer can live long lives “alongside” their disease. Thus, there is a need for constant attention in the treatment of “collateral damage” which, though linked to a positive therapeutic effect, can permanently compromise survivors’ life quality. It is no longer enough to deal with the issue of sexual dysfunctions focusing merely on anatomical damage to organs and functions. The mechanisms implicit in sexuality, in health as in sickness, are complicated and often hard to define - they involve psychological, relational, biological, cultural, ethnic, and religious spheres [54]. Thus, in addition to the dramatic bodily changes that are a veritable representation of the disease, such as scars and amputations, there are also negative experiences of fear, pain, and fatigue that influence interpersonal relations between couples and with family members and colleagues at work. For this reason, along with strictly medical interventions (gynecological, urological, endocrinological, and rehabilitative), it is necessary to break down the communication barriers that close the cancer patient within her solitude and to speak concretely and reassuringly so as to direct her to parallel therapeutic paths of support and counseling aimed specifically to help her regain a satisfying sexual life.

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