Difficulties with intimacy and sexuality are among the most common and longest lasting side effects of cancer treatments and can be caused by any of the cancer treatments currently available.1 Fortunately, even simple recommendations can go a long way toward ameliorating distress for most patients and their partners.2,3 Yet until recently this aspect of care for cancer patients has remained one of the most neglected, even as cancer providers worldwide begin to address issues of survivorship.
The scale of the problem
As many as 50% of all cancer patients will experience sexual difficulties after cancer treatments, significantly higher figures being reported for certain cancer types and treatments received. For example, as many as 70% of men undergoing localized treatment for prostate or bladder cancer will experience sexual difficulties.4-6 About 25% of other male cancer patients are similarly affected,6,7 with similar rates for survivors of leukemia and Hodgkin diseases.2 In terms of women’s cancers, approximately 50% of women who survive breast and gynecologic cancers also report sexual difficulties attributed to cancer and its treatment.8-11 Large numbers of colorectal cancer patients also report sexual dysfunction, with one recent survey reporting sexual difficulties in 39% of patients after treatment for colon cancer
and in a staggering 86% of survivors of anal cancers.12 Less commonly thought about are survivors of head and neck cancers, 50% of whom also report dissatisfaction with their sexual functioning.1 The scope of this article does not allow a detailing of further figures, but it is worth noting that patients with advanced disease and those receiving palliative care report the highest overall levels of both sexual dysfunction and dissatisfaction of all patient groups.13 For a recent more detailed literature review about how different cancer types and cancer treatments affect sexual functioning, refer to Sadovsky and colleagues.14
Why intimacy and sexuality matter
The ability to form and maintain intimate relationships represent a cornerstone for well-being and survival. Among other things, intimate relationships have been found to validate personal worth and lead to better adaptation to stress, faster recovery after potentially traumatic events, less physical illness and emotional distress such as anxiety or depression, and higher levels of well-being overall.15-23 Married individuals are generally happier and more satisfied with life, have fewer sick days, spend less time in hospital, and are less likely to suffer from chronic health conditions compared with their nonmarried counterparts.24,25 In fact, being married is associated not only with happier and healthier lives but also with living longer. This survival advantage is found in the population at large and also seems to apply more specifically to oncology. This effect has been reported for all of the most common cancers,26,27 and is also found in late-stage cancers.28 It has also been separately reported for breast cancer,29,30 bladder cancer,31,32 prostate cancer,33 and colorectal cancer.34,35
Although it is possible to share a truly intimate relationship without a sexual component, for most couples sexual intimacy is an important aspect of couple bonding, which continues to be relevant during periods of ill health and into old age and is associated with its own physical and mental health benefits. A strong correlation has been found between the experience of sexual desire between partners and marital satisfaction.36 The experience of sexual dysfunction, in contrast, is associated with distress and poor marital adjustment,37 and can be a contributing factor to the ending of relationships.38 Improved sexual function often leads to improved quality of interactions and relationship satisfaction.39,40
Unfortunately, today public and professional discourse about sexuality is almost exclusively focused on risks and dangers, such as the prevention of sexually transmitted diseases, underage sex and teen pregnancies, abuse, and pedophilia. Much less attention has been paid to the demonstrated health benefits of sexual expression, which have led the World Association for Sexology to conclude that “Sexual pleasure, including autoeroticism, is a source of physical, psychological, intellectual, and spiritual well-being.”41 Specific health benefits associated with sexual expression include an overall sense of enhanced well-being, greater happiness and mental health, improved sexual and reproductive health, benefits to the immune system, relief from pain, physical and mental relaxation, and longevity to name but a few.
In terms of oncology-specific benefits, research suggests that regular sexual expression may offer some protection against certain types of cancer. For example, Le and colleagues and, separately, Gjorgov reported that infrequent or complete lack of sexual intercourse and use of barrier methods of contraception are associated with an increased risk of breast cancer.42,43 In terms of men’s cancers, several studies have found an association between reported frequency of ejaculation and lower prostate cancer risk.44,45 The reader is directed to three excellent summary and discussion papers on the field for a more detailed discussion of the evidence.46-48
Sexuality and the cancer journey
A diagnosis of cancer brings with it a wide variety of difficult issues for the newly diagnosed person and his or her partner. There is perhaps, foremost, a close encounter with death and mortality, extended treatment periods with often difficult side effects, and long recovery periods. Then, there is the havoc cancer plays with a patient’s life: work, finances, and relationships with family and friends. Indeed, some cancer patients describe cancer as a totally life-changing event. They do not feel they are the same person they were before their diagnosis, and they often talk about the difficulties they have in adjusting to the many losses they have suffered as a result of their illness. Frequently, there is a re-evaluation of life priorities.
In this context, it is perhaps not surprising that for most couples affected by cancer, sexual concerns initially move into the background as they assess the degree of danger and upheaval a diagnosis presents. Even during longer periods of active treatment, people often focus on “just getting through.” Fatigue and other side effects of treatment mean that patients and their partners are often happy to put their love lives on hold under the circumstances. For some, however, sexual expression remains important throughout treatment as a way of holding onto normality, boosting self-esteem and a sense of still being an attractive sexual partner, sharing comfort and support, and reaffirming the couple bond. For others, sexual expression may even become more accentuated and important as a way of dealing with difficult emotions, getting reassurance and feeling sensations of well-being and relaxation. For most couples, however, concerns around sexuality come back into the foreground as the rest of life gradually returns to “normal,” and yet this aspect remains sadly missing or problematic. It is often only at this point in survivorship that couples contemplate seeking help for their difficulties, a process which will be much easier if appropriate early discussions have taken place during the acute phase of treatment.
It is essential to realize that the importance placed on sexuality does not usually change as a person approaches the end of their life, although the ways in which sexuality is expressed may alter according to circumstances.
But what can I do?
One of the most important and also difficult things for health professionals to achieve is resisting the natural inclination to make assumptions about the patients in front of them: the importance of sexuality in their lives, the existence of any sexual difficulties and how concerned they might be about these, their willingness to discuss sexual matters with us, or their ability to raise the subject without encouragement. In fact, the vast majority of patients, irrespective of age, cancer type, or stage of the illness, are willing to talk about their sex lives and the impact of the disease on their sexual function.13 Unfortunately, most patients do not feel comfortable being the first to bring up the subject. Patients are often unsure about the appropriateness of bringing up a sexual concern in a cancer setting and lack confidence about what words to use and how to express their concern. They also commonly express worries about being judged negatively for still being worried about sex at their age and when people might think they should be happy just to be alive. Moreover, patients do not wish to appear ungrateful in front of clinicians who helped save their lives.8,49,50 Patients, therefore, rely on their health care professionals to be the first to raise the subject or to find other ways of indicating it is acceptable to discuss the very sensitive topic of sexual problems after cancer. This can be done in a variety of ways; for example, it can be done by displaying written information or posters in waiting areas, by having it available as part of information packs, or by electronic means.
Early discussion of sexual issues is important, not only as a basic requirement to ensure the patient’s informed consent has been gained, but also because such early discussion may prevent some difficulties from developing in the first place1 and avoid an unnecessary aggravation of difficulties later on.13 What is equally important when raising the subject of sexual side effects routinely at this early stage is to be mentally prepared to hear most patients confirm that they are not currently concerned with this aspect of their lives and to cling to our professional rationale for nevertheless routinely including this sensitive topic in our discussions. Hearing that sexual difficulties are not uncommon and that further discussion and help will be available if necessary will encourage patients to come back and ask for support if difficulties are encountered later on.
Following an initial listing among other side effects when gaining patient consent, the subject of sexual issues can easily and unobtrusively be brought up again at regular intervals when treatment side effects are elicited or discussed or when an overall screening of psychosocial distress is conducted. Another helpful route to discussing intimacy can be to enquire about the partner’s coping or the impact the illness is having on the relationship, which can lead to more direct questioning of any impact on intimate aspects of the relationship without seeming out of context or inappropriate.
It is also important to acknowledge that as healthcare professionals we frequently share our patients’ hesitancy to begin a discussion about intimate topics. It is fundamentally important that each of us is aware of our personal comfort zone in this respect. We each have a role to play in ensuring that any side effects experienced, including the sexual consequences of cancer treatment, are identified and advice about management is given. Honest self-reflection, however, will help us decide how far our own involvement in the patient’s care will go and encourage us to map out the professional networks around us to be able to advise our patients about where else they can go to get the next level of support.
Annon provides a helpful model (the PLISSIT model) to conceptualize four different levels of psychosexual support, ranging from merely giving permission to raise sexual concerns, toward giving limited information about the potential side effects of treatment and provision of written information, then moving onto the making of specific suggestions tailored to an individual’s needs, often requiring some further training, and toward the final stage of intensive therapy required only by a few of the most complex cases.51 This model is helpful in allowing professionals to identify their own comfort and professional practice zone and encouraging them to identify colleagues capable of providing further input if required.
Similar stepped care approaches have been advocated in oncology settings, in which every cancer professional shares in the task of permission giving and the provision of some limited information, and patients are then stepped up a hierarchy of interventions according to need.2,7,10 Suggested interventions range from educational and practical to pharmacologic approaches at the lower levels, with access to psychological, psychosexual, and biomedical/surgical approaches for more complex cases. Research increasingly points to the importance of partner involvement
and the effectiveness of multidisciplinary approaches to treatment, even in traditionally fully medically managed areas such as erectile dysfunction.52-55 Unfortunately, the more intense levels of sexual rehabilitation are still not offered routinely in most oncology settings. More complex cases are, therefore, currently most appropriately referred to more generalist settings in sexual health, urology, gynecology, or psychology departments according to need.
Much lobbying and awareness raising still needs to be done before cancer patients will have access to the expertise they deserve in this frequently overlooked area. On a more positive note, it has been shown that more than 70% of cancer patients do not require access to such in-depth interventions. Instead, their difficulties can be significantly improved by nurse (or nonspecialist)-led brief counseling involving some basic information about the impact of cancer treatment on sexual function combined with some practical tips and advice for how to resume intimacy and, if necessary, how to “find new ways of being intimate when old ways no longer work.”2,3
For those interested in studying these topics further, a number of relatively new resources are available that provide a helpful introduction to the field. Katz provides an excellent overview for professionals in her book Breaking the Silence on Cancer and Sexuality, in which she tackles questions, such as how to raise the subject in clinical practice, and gives information about how different cancer types and treatments affect sexual functioning.56 The Cancer Council Victoria and Brandenburg and colleagues provide two examples of practically focused and relatively extensive patient information booklets on the subject of intimacy and sexuality after cancer that can both be downloaded free of charge.57,58 Further, quality information is provided by most national and site-specific cancer organizations. It also may be worthwhile to look for any introductory sexual communication skills workshops that can be both thought-provoking and great fun. Workshops such as these can go a long way toward increasing confidence and skill levels and are usually well received.59-64 The International Society for Sexuality and Cancer provides an excellent and cost-effective way of connecting professionals with an interest in this area to each other within and across national boundaries.
References
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