Sandra Vilarinho1 and Graça Santos1
(1)
Directory Board of the Portuguese Society for Clinical Sexology (SPSC), Porto, Portugal
Sandra Vilarinho (Corresponding author)
Email: sandravilarinho@gmail.com
Graça Santos
Email: graca.s@gmail.com
9.1 Introduction
Receiving a cancer diagnosis can be one of the most distressing events in life. Despite advances in treatment, it still remains a potentially life-threatening disease.
Cancer represents a serious threat to the self, to life and well-being, and confronts with issues of personal vulnerability and mortality. A range of strong negative emotions and concerns about the future disrupts the psychological balance of both the patient and the family.
It is a common reaction for the patient to ask why the disease struck them, and feel sad, angry, helpless, and worried about the future. They may also fear issues related to body image, identity, dependence, and social stigma.
Sexual concerns may also arise, even if that does not happen immediately. A diagnosis of cancer can be very threatening for intimacy issues, namely for the relationship with a changed sense of self and a changing body, and for sexual intimacy. However, sexual expression may also represent the possibility of preserving emotional balance and enhancing health, both physically and psychologically.
In this chapter, we focus on the psychosexual consequences of cancer diagnosis, how to address sexual intimacy, and how to protect or “prehabilitate” it in the initial stage.
This approach to sexuality is rooted in the general idea of prehabilitation in order to prevent/minimize sexual problems over the treatment process, and afterward [1].
9.2 Impact of Diagnosis on Sexuality and Intimacy
Sexuality is much more than the ability to participate in the act of sex. Sexual health is recognized as an integral component of well-being and quality of life.
Cancer diagnosis often sets off an emotional crisis that dramatically changes the way patient and family relate to each other, the way the person relates to his/her body and the way the person or the couple experiences intimacy and sexual life. The life-threatening nature of cancer might lead to the assumption that sexual activity is not important to patients and their partners, but this view has not been supported [2]. Significant changes in sexuality, sexual functioning, and relationships can occur. Vulnerability, fear of abandonment, or questions about sexual activity in the future are some of the identified concerns. Any or all phases of the sexual response can be impaired, and sexual dissatisfaction is fairly common following a cancer diagnosis [2, 3]. Difficulties in feeling pleasure during sex are also possible after diagnosis.
A number of factors have been associated with cancer and sexual difficulties or psychological distress. Younger age, prior mental health conditions, impaired couple relationship, and unsatisfactory previous sexual life increase the risk for sexual adjustment difficulties after a cancer diagnosis [2]. Cancers that impair genitals, reproductive organs, appearance, or body parts (e.g., breasts) that are intimately associated with patient’s basic self-concept and sexual identity, are more likely to negatively impact sexuality. However, other cancer types (e.g., lung, blood, head and neck) are also likely to involve sexual difficulties [4].
9.3 Cancer, Negative Mood, and Sexuality
Adjustment disorders with depressed or anxious mood occur more frequently during the early onset of disease while major depression is more common in advanced stages of cancer [5, 6].
Adjustment disorders include negative emotions encompassing frustration, embarrassment, dysphoric mood, anxiety, anger, irritability, or loneliness. Usually in a state of negative mood, sexual interest and sexual response tend to decline [7]. Both men and women who are depressed often report a significant decrease in libido. In men, a cancer diagnosis can trigger depressive symptoms, negatively impacting both sexual desire and the ability to get or maintain an erection [8].
Nevertheless, according to Bancroft [7] there is an individual variability in how mood and sexuality interact, suggesting that the relation between negative mood and sexual interest/response is complex and not always linear. The complexity appears to increase if we consider the potential positive role of sexual activity in depression, namely the possibility of contributing to improve intimacy and self-validation [8]. In this sense, sexual activity may contribute to relieve from the stress and suffering in cancer patients. Moreover, it may represent a means to express emotional closeness, bonding, and connection, reflecting an intimate form of communication.
9.4 Myths and Assumptions
Social constructions regarding cancer, appropriate sexual conduct/patterns, or expected sexual life after cancer are frequently bounded by misconceptions and myths. The assumption that illness precludes sexuality or that cancer patients always relegate sexual functioning to a nonpriority level, despite evidence otherwise, is shared not only by many patients, but also by many professionals.
Potential adverse effects of sexual activity on cancer treatment, or the possibility of contamination/spreading the disease can be (erroneously) feared by the couple, adding even more fears and suffering to the already difficult condition of a life-threatening disease.
It is the health care professionals’ (HCPs) responsibility to discuss, inform and clarify such erroneous assumptions, thus contributing to protect and improve patients’ general and sexual well-being.
9.5 The Role of Health Care Professionals
Communication about sexuality and intimacy in the context of cancer is rarely addressed in health care settings and even more rarely when considering the diagnostic phase.
It is not uncommon to find HCPs assuming that sexuality it not a priority or a matter of life and death, or that they will not address it because “other professionals” will do it, or that sex is something that the patient will address when there are worries. However, people with cancer and their partners may have unmet needs in the area of sexual information and support. Patients with all kinds of cancer – not just those with cancers affecting fertility and sexual performance – expect and want open communication about intimacy and sexuality, and they expect HCPs to address those issues. There are many reasons why HCPs tend to avoid communicating sexual issues with their patients. They range from lack of comfort with the theme – embarrassment and lack of communication skills in this sensitive and personal area – to “lack of time,” not knowing how to approach the theme, lack of specific tools, or considering that it is never the right moment or the appropriate setting [9, 10].
Addressing the topic at an early stage may contribute to enhance intimacy and prevent unnecessary suffering associated with sexual problems.
HCPs may play an important role in cancer patients’ sexual health: sexual issues do not have to be raised as a separate topic and can also be included in the routine communication with both men and women.
We believe that, as part of the solution, HCPs should receive adequate training in work-related sexuality education/counseling (with workshops, courses, and so on). In that process they should invest in reflecting and deciding if they feel comfortable in discussing sexual issues (which is also easier with training in communication, and by trying to become comfortable with their own sexuality).
Provided that the former conditions are met, HCPs can:
1. 1.
2. 2.
3. 3.
4. 4.
5. 5.
9.6 How to Protect Sexual Intimacy
Cancer can result in dramatic changes in sexuality, sexual functioning, and intimate couple relationships, with significant implications for both quality of life and psychological well-being. This can be very dramatic and a source of deep suffering. However, if appropriately addressed and well discussed it can also be viewed as an opportunity to create space for sexual pleasure that is free from the “must”/“have to” constraints of sexual performance.
An example is a study with lung cancer patients where couples described negative and positive effects of cancer on intimacy. While negative effects (including physical and psychological effects) were associated with cancer and its treatment, positive effects included an increase in noncoital physical closeness and appreciation of the spouse [11].
So, being aware of the possible changes in sexuality that might come with cancer and its treatment, but also being aware of the multiple possibilities for pleasure beside the coital imperative, may help to give back patients the freedom to choose and successfully renegotiate the experience of sexual intimacy after cancer.
In the interim between the cancer diagnosis and the treatment it may be important to remind patients that the chances of still finding pleasure in physical intimacy during treatment are higher when people have enjoyed a healthy sex life before starting treatment, This may work both as an encouragement to remain intimate and as a protective factor regarding the cancer threat and its consequences.
Sexual intercourse may or may not be possible after treatment. Independently of sexual intercourse there are a number of other ways of remaining intimate. People may discover that intimacy takes on a new meaning and that they relate to themselves and/or their partner differently: hugging, touching, holding, and cuddling may become more important; and sex by sex may become less important.
In that context we believe that offering suggestions to couples on the importance of cultivating erotic, romantic moments that are not sexually demanding can be very beneficial. Examples for this are given in Table 9.1.
Table 9.1
Suggestions on the importance of cultivating erotic/romantic encounters
|
The option “to just being close to each other,” intimate with their bodies; skin on skin (even if there are no physical limitations or constrains yet) is constantly available and vital for the couple; this will always remain present |
|
The importance of “keeping the flame alive” (e.g., with romantic or erotic daily notes). That is a secret ingredient not only for maintaining quality of life and well-being but also as part of the treatment and recovery process |
|
Keeping close physical and emotional contact (kissing, cuddling, and caressing each other). That will convey the message that both partners care for each other deeply, independently of the disease |
|
The feeling of being touched in a loving way is very enjoyable and allows both partners to offer and receive the love and reassurance that they need. |
In selected cases it can be very relevant to recommend the possibilities of training body-mind exercises including pelvic floor muscle work together with mindfulness and self-compassion (e.g., breathing exercises – just being with the breath; body scan – plain attention to the body as it is, not how it should be or it has been; Kegel exercises in full attention with acceptance and a nonjudgmental attitude) [1, 12, 13].
Conclusion
This chapter described the impact of cancer diagnosis on sexuality and intimacy, how mood may mediate it, and how myths and wrong assumptions can shape and limit cancer patients’ sexual lifes. Furthermore, the possible role of HCPs is stressed and possible ways of enhancing and protecting patients’ sexual life and well-being are clarified and illustrated.
Addressing intimacy issues and sexuality concerns in health care settings at an earlier phase (after diagnosis, before treatment) may help patients in several different ways:
· It may bring permission and allow for space to openly communicate and discuss sexual worries, difficulties, strengths, alternatives in order to protect sexual health and intimate relationships.
· It may contribute to treatment adherence by clarifying the sexual consequences of both disease and treatment, and how to cope with them.
· It may contribute to strengthen intimacy by creating new sexual scripts, less dependent on performance and more focused on “inner skin.”
· In this sense, it may also contribute to prevent or minimize sexual problems associated with the disease and treatment process.
· Ultimately, it may contribute to reinforce and bring more attention to the person itself rather than to the disease.
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