Woet L. Gianotten1
(1)
Physical Rehabilitation Sexology, Rehabilitation Centre De Trappenberg, Huizen, The Netherlands
Woet L. Gianotten
Email: woetgia@ziggo.nl
In the former chapter, we looked at sexuality or more specifically at aspects of sexual function. In this chapter, we will widen the scope. Sexuality has more pillars than function alone. The two other elements that seem very relevant in the context of cancer and its treatment are sexual identity and sexual relationship. Each of these three elements, sexual function, sexual identity, and sexual relationship, can be seriously disturbed over the cancer journey. We will try to address each of those areas separately, but it is obvious that they influence each other and subsequently they will influence the quality and quantity of sexual expression and sexual satisfaction.
An example: If a man loses his erection (function), there is a high risk that he will feel less of a man (identity). He then probably will approach his partner less. The partner can feel excluded (relationship) and then both he and the couple will have less sexual contact and sexual pleasure.
Sexual function itself is more or less what takes place in the course of the sexual response with desire, arousal, and orgasm or ejaculation. One could call that the sexual machinery, but we have to take into account that there are also other pieces of “sexual equipment” that can be damaged over the cancer journey. Examples are the erogenous zones that can be lost or damaged. Finally, we will focus on fertility.
In the next part of this book, separate attention will be paid to various relevant phases/strategies of the cancer journey (with the focus on diagnosis, radiotherapy, chemotherapy, surgery, and additional medication). In this chapter, the focus lies on the various elements of sexual function, sexual identity, sexual relationship, sexual equipment, and fertility, and how the cancer itself or the treatment can influence those elements.
5.1 Sexual Function
The former chapter discussed sexual function, usually called the sexual response, which can roughly be explained as composed of three different phases. When seen as a linear process (as tends to happen in most males), at first, there is desire, followed by sexual arousal (erection or lubrication), and then orgasm (in men usually associated with and experienced as the same as ejaculation).
In this piece, the focus is on damage to function. Common sexology uses the term sexual dysfunctions. In short they comprise: disturbed desire; disturbed erection or lubrication, and disturbed orgasm or ejaculation. Sexology usually adds the dysfunctions of sexual pain (called “dyspareunia”) and disturbed pelvic muscular function (causing pain to penetrate vaginally or anally and the impossibility to penetrate the vagina, called vaginismus).
Looking at sexual dysfunctions/disturbances from the perspective of cancer and cancer treatment, we have to be aware that there are many other biological, psychological, and social factors (not related to cancer and its treatment) that can also play a role in causing a sexual dysfunction, and in maintaining or in aggravating an existing one. Besides, context is a very relevant influencer of sexual function and dysfunction, especially in women. Both the damage and the possibility to effectively heal a dysfunction are the most clear in those patients who were well-functioning before the cancer treatment.
5.1.1 Sexual Desire Disturbances
Absence of desire (or no desire yet) is very common in various stages of the cancer process, starting with the diagnosis. In some patients, desire has dropped already before the diagnosis because of fatigue (as in blood/lymph cancer) or because of vaginal troubles in gynaecological cancer. After the diagnosis, the desire for genital or penetration sex seems to disappear in the majority of patients. This is followed by the treatment. Important reasons for loss of desire in the treatment stage are low testosterone (due to surgical or chemical castration, pelvic radiotherapy or high dose of opioids) and fatigue (especially in blood/lymph cancer treatment and chemotherapy). Fatigue in itself can also be a result of low androgen levels.
Especially in patients who formerly were blessed with good desire, the combination of chronic fatigue and low sexual desire (commonly found after treatment for blood/lymph cancer and ovarian cancer) should warn us about the possibility of low androgen levels as causing factor.
Absence of proactive sexual desire can also be the side effect of neurotransmitter-influencing medication. Especially, SSRI and SNRI antidepressants are known to negatively influence sexual desire (and as a matter of fact, also the other phases of the sexual response). The group of paroxetine, citalopram, and venlafaxin (together representing more than half of all outpatient antidepressant prescriptions in many western European countries) is known to negatively influence sexual desire in >60 % of patients. [1]
Next to these physical killjoys, there are also emotional reasons. In a large meta-analysis, 38.2 % of cancer patients were found to suffer from depression, anxiety, adjustment disorder, or dysthymia [2]. These conditions will diminish desire for the majority of patients (although, a small number of persons desire more sex when they get depressed).
Desire is influenced by many other disease- and treatment-related side effects: disfigurement, incontinence, pain, changing partner relationship, and so on.
5.1.2 Arousal Problems
In Chap. 4, we have already mentioned several of the psychosocial reasons and several noncancer-related organic reasons for erectile disturbances (chronic diseases, medication, and lifestyle). Here we will focus on the cancer-related causes and disturbances.
A first step in arousal is arousability, for which one needs sufficient androgens. No more being able to get “horny” is common after castration, after treatment for ovarian cancer, after extensive treatment for blood/lymph cancer, and after androgen deprivation therapy in prostate cancer.
Loss of erogenous zones can also be a reason for diminished sexual arousal. This happens, for example, in penile cancer surgery (especially in complete penectomy) and after mastectomyin women for whom breast stimulation was a prerequisite for arousal (and sometimes for orgasm).
The majority of erectile disturbances are caused by direct damage to the erectile nerves in the lower pelvis. Radical surgery for prostate cancer, for bladder cancer, and for colorectal cancer is frequently accompanied by loss of erection, even in nerve-sparing surgery. When the nerve bundles are completely cut, spontaneous erection will not return. When, on the other hand, the nerve bundles are only bruised (by traction or heat), the damage is temporary and the nerves can gradually revitalize. Then, when there is an absence of regular oxygenation in the cavernous body, the endothelium will suffer damage and the intracavernous muscles will become fibrotic, finally leading to complete erectile failure. Pelvic radiotherapy also can cause erectile disturbance, but that develops in a different way. Whereas after surgery the erection nearly immediately comes to a standstill, radiation damage takes much longer and erection is lost gradually.
Erectile function can also disappear when the androgen levels go very low. A substantial amount of men on androgen deprivation therapy have no more erection (but some do have!). With genital arousal being relatively less relevant for female sexual identity and relatively easily solved by lubricants, female arousal problems have received far less attention than erectile dysfunction. Gradually it has become clear that nerve-sparing techniques in radical pelvic surgery are also beneficial for women, and that they can preserve lubrication capacity. The lubrication capacity will also get diminished after pelvic radiotherapy.
Another way that diminished arousal in men and women can happen is through disturbed neurotransmitter balance, a side effect of SSRI and SNRI antidepressants that can add to an already weak arousal capacity [1].
5.1.3 Orgasm Problems/Ejaculation Problems
After radical surgery for prostate cancer and bladder cancer there is no more semen, because prostate and seminal vesicles (being semen-producing organs) have been removed. However, orgasm is still possible, but it can be accompanied by pain or by loss of urine. For the men who had prostate massage in their love map, prostatectomy removes the typical orgasm sensations. A small percentage of men on androgen deprivation therapy can still have orgasm (although, there will be no ejaculate, since testosterone is needed for semen production).
Surgery with removal of the lymph glands around the aorta (as for example in testicular cancer) can damage the autonomous nerve fibers and cause anejaculation or retrograde ejaculation. In the last case, the semen disappears into the bladder, although the orgasm sensation stays more or less normal. It can be difficult to reach an orgasm when pain or urinary incontinence makes the “letting go” (needed to reach orgasm) difficult. The majority of orgasm problems are induced by antidepressants and their influence on the neurotransmitter balance. The SSRIs and SNRIs strongly influence orgasm. The group of the most frequently prescribed antidepressants (venlafaxine, citalopram, and paroxetine) disturbs the orgasm capacity in 49–58 % of patients [1].
The phases desire, arousal, and orgasm can develop independently of each other, and be damaged independently of each other. In a very simplified way one could say that in cancer treatment desire is damaged mostly by hormonal disturbances and fatigue; erection by damage to the local circulation and its innervation; and orgasm by damage to the neurotransmitter balance and to innervation. This represents, at least partly, the necessary neuro-endocrine conditions of those systems. Their independency can be seen in the fact that each phase can exist without the others. So arousal can develop without desire and orgasm can take place without erection.
5.2 Sexual Identity
Identity in sexology has various meanings. In some areas of sexology, identity indicates male or female gender; in some other areas it indicates sexual orientation. However, here we talk about sexual identityindicating the feeling of being male or female, the feeling of being a sexual person, an erotically desirable or an attractive person. It is rather difficult to separate sexual identity from the other elements and there is much mutual influencing with sexual function, sexual relationship, and sexual activity. Yet we believe that sexual identity deserves separate attention in oncological care. So we will look at various components of sexual identity.
5.2.1 Symbols
Organs like the penis and testicles and the female breasts belong so much to male or female sense of being that losing them can be a serious threat to identity. The same happens when men lose their muscular body because of cachexia or antihormonal treatment. Sexual identity can also be damaged when the symbols of the other sex begin to appear. This is clearly seen in men who develop gynecomastia (“female” breasts) and female fat distribution. Organs are not the only symbols of identity. Losing erection or ejaculation can do the same. Men with androgen deprivation treatment can also lose stamina, assertiveness, and aggressivity, and can develop hot flashes and bouts of crying (usually seen as “typical female behavior”).
5.2.2 Appearance
For many a woman, mastectomy is a serious attack on her identity, even if she has no partner. Comparable are the consequences of baldness, amputation, stoma, or radiotherapy burns. Such disruption of disfigurement is found relatively more in women and in gay men (and relatively less in straight men).
5.2.3 Performance
Being able to function in society as an employee, a parent, or the breadwinner is part of our identity. Such function can be taken away in the cancer journey. Being able to function in the bedroom is relatively more important in men. Loss of erection is a serious blow to the male identity of many men (even when the female partner does not feel damaged by his loss of erection). In gay relationships, sexual performance is relatively more important, and then damage to erection and ejaculation is strongly connected to identity.
5.2.4 Fertility
For many women and (less) for many men, fertility and future motherhood and fatherhood are important elements of sexual identity. We will address that further in this chapter.
5.3 Sexual Relationship
Not only is the patient dramatically influenced by cancer diagnosis and treatment, but also the partner and the sexual relationship. Chapter 25 will extensively address couple sexual rehabilitation after cancer and Chap. 30 will specifically address the partner. In this chapter, we will restrict ourselves to the influence of the process on the sexual relationship. After the diagnosis, interpersonal relationships are vulnerable and spouses also experience mood changes and depression. This is one reason why we tend to use the term “the new we.” Whereas sometimes the changes are positive, they frequently are negative.
Mortality is reduced in cancer patients with a strong social network, and the presence of a dedicated spouse seems to be the most important component of strong social support. Both mortality and quality of life are better in married than in unmarried cancer patients [3]. So preventing partner abandonment and keeping the relationship as good as possible seems important. In general oncology, 7 % of relationships ended in separation or divorce after the cancer diagnosis, and 22% when there was a primary brain tumor diagnosis. The most striking of these results was that in 88 % of those separations, the female was the cancer patient and the male the supposed caregiver [3]. It seems rather clear that men are not very good in caring. Although this was not a part of the above-mentioned research, we dare to suppose that disturbed sexuality is a substantialcause for this gender disparity. Whereas in prostate cancer women tend to deal reasonably well with lost erection [4], men frequently are lost, when in female cancer the woman has lost desire or is unable to have intercourse. On the other hand, partner initiation of sex in breast cancer was found to predict greater marital satisfaction [5].
This indicates another important reason to pay ample attention to sexuality.
The partners themselves will also undergo changes. On the one hand, there is the diagnosis as a major life event with fear of loss. On the other hand, the caring role and the taking over of many tasks that formerly were done by the patient can cause serious fatigue, leading to abstaining from sexual initiative or seduction also from the partner’s side.
5.4 Sexual Equipment
Talking about sexual equipment may sound a bit disrespectful. However, various parts of our body have indeed a more or less mechanic function in the development of sexual play. Cancer treatment can influence that process, which is different from directly disturbing sexual function. In this context, we do not talk about the genitals, but address several of the other “pieces of equipment” and their common ways of disturbance.
Tongue and Lips
In most Western cultures, kissing and nibbling are an important part of lovemaking.
That pleasure can be strongly reduced by cancer and its treatment. Lips and tongue are also important for the “giving” part of oral sex. Both, for the patient and for the partner the diagnosis of lip cancer will emotionally interfere with kissing and oral sex. The interference will be more “technical” after surgical treatment. An example is the extensive damage of the “Commando procedure” for tongue cancer. Then giving oral sex can become very difficult and orally bringing a female partner to orgasm impossible. So information on the patient’s or couple’s love map is important. All oral functions are impaired in serious aphthosis (mucous ulcers in mouth and lips) as caused in some chemotherapy.
Salivary Glands/Saliva
Surgery or radiotherapy of the salivary gland area can stop the production of saliva. This can cause, on the one hand, a social disturbance (more difficult to verbally communicate), and on the other hand, a sexual play disturbance. Without saliva, kissing and giving oral sex can become impossible. A “dry mouth” can also occur as a side effect of antiemetic or anticholinergic medication.
Breast and Nipples
In many cultures the breasts are very relevant for sexual identity. However, breasts and nipples have also other functions. Being an important source for attraction, damage to the appearance can influence the desire of the partner. Breasts and nipples are for many women and partners (although not for all) very relevant for the pleasure of lovemaking. Mastectomy or other changes by surgery, radiotherapy, and lymphedema can diminish that pleasure. Breasts and nipples usually are erogenous zones and they can be very important for sexual arousal. Mastectomy will force reinvention of patterns of lovemaking, which can be extremely difficult if breasts or nipples have been an indispensable part of the sexual encounter for the woman or for her partner.
Hair
Hair and pubic hair are important pieces of a person’s identity and their real or supposed attractiveness. Especially, pubic hair is also an erogenous zone. For some people, pulling and playing with pubic hair is part of self-stimulation or partner stimulation. Besides, pubic and axillar hair are carriers for scents and odors that act as aphrodisiacs. Chemotherapy can totally destroy the hair pattern and all its erotic meaning. Surgical and chemical castration can both change the density and appearance of pubic hair, and also the scent. Serious hypogonadism can change the facial hair pattern, relevant for some men.
Smell and Taste
Smell is an “ancient primitive” part of sexual attraction (or repulsion), so changes can strongly influence the sexual attraction in a couple. On the one hand, smell sometimes disappears due to the treatment of facial or brain tumors or because of chemotherapeutic agents. Smell and also taste can disappear because of radiotherapy or chemotherapy. The smell (and maybe taste) of the body can also change due to hormonal therapy, chemotherapy, and sometimes other medication. Both smell and taste can be relevant parts of kissing and oral sex. The smell of tissue decay (for instance, from the lungs in lung tumor) can be a reason to stop sharing the same bed.
Skin
Being the biggest erogenous zone of our body, damage to the skin can have extensive effects on various aspects of lovemaking. The appearance of the skin affects real or perceived attractiveness. Surgical scars and radiotherapy burns can diminish that attractiveness. A continuous sweaty skin because of anticholinergic or serotonergic medication or the transpiration waves of castration-induced menopause are real killjoys for both patient and partner. The skin could be called the mirror of the erotic soul. This is not only a matter of appearance, since the skin is also a relevant erogenous zone, both for the lovemaking partner and for the patient. Diminished sensitivity, hyperesthesia, paresthesia, and even serious pain can be the result of toxic peripheral neuropathy, due to some groups of chemotherapeutics (taxanes, platinum compounds, proteasome inhibitors, vinca alkaloids, and antiangiogenic/immunomodulatory agents). Such chemotherapy-induced peripheral neuropathy (CIPN) seriously impairs the quality of life, but it does tend to improve and the majority completely resolves within a year of stopping treatment [6]. Not only receiving erotic touch and massage can become impaired, but also the sensation of touching and massaging the partner can be seriously impaired or even impossible. Such erotic and sexual implications of CIPN receive nearly no attention in the medical literature. Loss of sensation is also experienced with extensive lymphedema, especially in the arm and hand as seen after treatment for breast cancer.
Nails
Various chemotherapeutics can cause changes in the nails. In some patients, the damage is only discoloration and appearance changes. Other patients can suffer from pain in the nails and even complete loss of nails. Whereas the cosmetic changes can be relevant for sexual identity and attractiveness, pain and loss can seriously influence erotic play for those who used to scratch and tickle.
Weight and Body Distribution
Although this is in the current era a rather hot topic in relation to body image, most people have developed some balance between their desired and their actual weight. That balance can be seriously disturbed. Cancer itself can cause cachexia with loss of muscles and appearance. On the other hand, there are treatment effects such as increase in weight due to corticosteroid medication. There are also changes in appearance, for instance, after amputation or lymphedema. Body appearance tends to change considerably in men with androgen deprivation treatment, who may acquire a female fat distribution and sometimes develop breasts, influencing real or perceived attractiveness.
5.5 Fertility Aspects
Giving birth to and raising a child is another major element of quality of life andimportant in the destination of many couples. Cancer treatment can seriously impair fertility. That was common knowledge in pediatric cancer and adolescent cancer (especially testicular tumors), where chemotherapy, radiotherapy and orchiectomy interfered with a fertile future. Such cancer damage is still happening, but gradually other complexities developed. Whereas in the past couples tended to have their children earlier (which frequently meant before developing cancer), nowadays with better contraception they postpone pregnancies. However, delayed childbearing is also accompanied by a gradual decline in fertility [7]. Then, when cancer occurs and cancer treatment has to follow, fertility is impaired in various ways. On the one hand, there is the direct chemotherapeutic and radiotherapeutic damage to the gonadal hormones and the gonads. In radiotherapy for cervix cancer and in radiotherapy or chemotherapy for blood/lymph cancer, the menstrual periods disappear or become very irregular, the desire can go down because of a decrease in testosterone levels, and ovulation and sperm production are impaired. On the other hand, there can be the insecurity about the prognosis of the cancer and the direct future, as a contraindication to fast conception. Further, there is the direct teratotoxic damage to the developing egg and sperm cells. After chemotherapy and radiotherapy, conception has to be postponed till all the damaged gametes and ovarian follicles have disappeared. This period is relatively longer for sperm cell with a life cycle of about 72 days, plus some weeks before all mature spermatozoa are shed. A third reason for fertility disturbances in women is the above-mentioned postponed decision to have a baby and the accompanying decline in fertility. In other cancers, fertility disappears because of bilateral castration. Then there are no more gonadal hormones and no more sperm cells or eggs. That happens for instance in some of the young women with BRCA mutations to prevent breast cancer and ovarian cancer.
Damaged fertility can also indirectly influence sexuality, because fertility is for many a very important element of sexual identity.
Gradually, increasingly more techniques are being developed to preserve fertility [7].
5.6 Epilogue
In the course of the cancer process, patients and couples can experience many different side effects that can interfere with intimacy and sexuality. The damage can occur immediately and also gradually after the treatment; the damage can interfere directly with sexual function, but damage can occur also to sexual identity or sexual relationship and sometimes specifically to body parts that had a role in sexual excitement or pleasure.
We know that for some of our patients, sexuality is very important for their quality of life. We also know that patients do not raise this topic. And we have to be aware that it is impossible to know if for a particular patient or couple sexuality indeed is important. So undeniably we, the professionals, have to proactively address this area, not only during the intake, but again during various stages in the process of treatment and recovery.
To assist in that process, this chapter has presented indications on various potential lines of damage.
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