An important part of the uniqueness our humanness is expressed through our sexuality. This can influence show we relate within our intimate relationships, family, friends and society in general. The notion of ‘being sexual’ involves the concepts of sexual drive (libido), sexual activities, intimacy, and one’s physical closeness and expression of maleness, femaleness or other gender identity. Such processes however, are influenced by a range of factors such as cultural diversity, social communities, and of course health and illness. It has been estimated that between 20% - 90% of those diagnosed with cancer experience sexual problems at some point during and / or after their treatment as a direct consequence of their illness or treatment (Barton-Burke & Gustason, 2007).
A person who is diagnosed with cancer will experience a range of emotions and challenges related to the initial shock, the treatment, and subsequent psycho-social changes within their relationships and life in general. In addition however, added to these factors is the particularly significant burden of psycho-sexual changes and adjustment as a consequence of the direct or indirect effects of treatment (Krebs, 2007; Atkins & Fallowfield, 2007). Many such issues will arise that are likely to affect an individual’s sexuality, including changes in body image from surgery, and perhaps less obvious but equally potentially damaging, the effects of radiation, chemotherapy, and endocrine therapies. These treatments result in the onset of permanent or temporary early menopause in women involving, amongst others, a diminished sexual desire, vaginal dryness, fatigue, and psychological issues such as a reduction in self-esteem, fear, anxiety and depression (Hughes 2009)
Hughes discusses the importance of directly addressing sexual concerns with the person who has cancer. From my professional experience this situation can be likened to ‘a ripple in a pond’ effect whereby the disease of cancer and subsequent treatments affect psycho-sexual well-being, which in turn affects one’s sense of sexual identity, which then affects the person’s general sense of self including the range of psychological factors outlined above. This ‘ripple-effect’ is particularly the case in the area of gynaecological, head and neck, bowel, and breast cancers. The current paper will focus of the latter of these (Sundquist, 2003).
In Australia, more than half of all people diagnosed with and treated for cancer will survive their disease. Sexual issues resulting from their illness however, may persist for many years after treatment or even after the cancer has been cured. (Shell, 2002). People diagnosed with breast cancer, women or their partners, do not usually tend to bring up the subject of sex either at time of diagnosis or during their treatment. While the primary reason for this appears to be, at least ostensibly, because the imminent treatment protocol is for survival, it is also noted that many health professionals are uncomfortable in raising the issue, as are the patients themselves. Such informal observation is supported by a growing number of researchers and clinicians (for example, see Finestone, (2008); Krychman, (2008); Horden (2000, 2007123); Sundquist (2003); Shell, (2002); and Stead, Brown, Fallowfield & Selby, (2003).
The purpose of the present paper will be to examine the most current literature discussing the psycho-sexual impact on women diagnosed with breast cancer. This will be done by looking at how information, such as that related to sexuality, intimacy and support, is currently communicated to women who have experienced this diagnosis. In general, it is suggested that there are significant gaps and inconsistencies in the provision of information and knowledge, and an apparent belief of many health care professionals that ‘someone else’ is responsible for assisting patients in this area of their life. This assumption can often lead to a lack understanding and miscommunication between health care professionals and patients as to potential changes in sexual functioning as the result of breast cancer and its related treatment outcomes. Further, it may result in women feeling disempowered in their treatment process, including their perception of their ability to raise their concerns in a professional setting (Stead, Brown, FallowField, Selby & Sundquist, 2003). The paper will conclude with a brief overview of suggestions for future research and clinical practice in this area.
Breast Cancer Treatment and Impact - Menopausal Effects:
In 2004, 12,126 women in Australia were diagnosed with breast cancer, and there were 129,438 women alive with a history of breast cancer (www.breasthealth.com.au 2008). About one quarter of women diagnosed with breast cancer in Australia will be under the age of 50 years with approximately 700 women being under the age of 40 (www.breasthealth.com.au, 2008). Research in the area of breast cancer survivorship highlights that younger woman are twice as likely to experience sexual problems and often more severe in nature than older women (Sundquist, 2003). Such sexually related issues are usually referred to as ‘treatment related premature menopause’ because the problems with which they are faced are similar to those occurring during the natural onset of menopause in older women.
One of the major impacts of treatment on the female sexual arousal cycle is reduced libido, hot flushes, fatigue, disturbances to sleep and mood, and vaginal dryness. It has been shown that the presence of oestrogen is essential for the maintenance of a healthy vagina and a general sense of well-being, and assists with sexual arousal. It does this by assisting with vaginal suppleness, the production of fluids and liquids to help the lining maintain thickness and elasticity, and it stimulates the cells of the vagina to produce the protein glycogen which helps protect against infection (Casciato & Territo, 2008).
Unfortunately however, most biomedical treatments for breast cancer work by blocking the production of oestrogen (and indirectly on the level of circulating testosterone) because of the significant role that this hormone plays in the development or recurrence of breast cancer (Fabian, 2007). As such, women who undergo hormonal (endocrine) therapies will experience reduced levels of circulating oestrogen. Consequently, without oestrogen, the woman is likely to start experiencing early menopausal symptoms, including vaginal thinning, reduction of cells producing mucous, loss of fatty tissue, loss of elasticity, and less lubricating fluid. These frequently result in dyspareunia (painful intercourse), a reduced libido, a lowered sexual desire and low self esteem and body image. In some women, if these symptoms are left unaddressed, it can lead to the presence of the chronic painful condition vaginismus (Sundquist, 2008).
While a medical approach to these symptoms can be utilised to some degree, the personal and relationship impact of a reduced sexual arousal and response cycle and associated lowered self-esteem, body image and disruption to sexual intimacy, can be considerably detrimental to a woman’s life, and should also be given much consideration (Avis, Crawford & Manuel, 2005). For the purpose here, ‘body image’ is defined as a woman’s perception of her body, including her femininity, attractiveness, sense well-being and “enjoying one’s body as a symbol of social expression, and as a way of being in the world” (Fobair et al. 2006). In a report prepared for the National Breast Cancer Centre, Kissane, White, Cooper & Vitetta (2004), provide detailed information related to the psychosocial impact of body image and sexuality in women after breast cancer. These researchers indicate that there are a number of factors that are likely to affect the body image and consequently the self-esteem of these women, and that these in turn significantly influence the person’s perception of their sexuality and sexual behaviour. For example, they report that while ‘body image’ may be viewed as being related to one’s physicality, many women view it “as involving a sense of wholeness and functionality” (p7). As such, the women who see a direct connection between their body image and “sense of self-worth, attractiveness or wholeness”, are probably more at “risk of poor psychosocial adjustment following treatment for breast cancer” (p7). The same researchers also discuss a report in which it was found that following a mastectomy, women frequently “felt less attractive, less sexually desirable, and more ashamed of their body; they enjoyed sexual relationships less than they did before treatment” (p36). These issues are likely to lead to a diminished sexual interest, problems with sexual arousal and consequent difficulty resuming sexual activity.
Barriers Preventing Discussion of Sex and Sexual Issues
There is a growing body of knowledge in the literature that talks about the psychological and social impact on the quality of life, and the need to identify ways to improve psycho-sexual functioning for women who are living with breast cancer.
One of the primary goals of such research is to assist these women to have an improved overall quality of life (QOL) and emotional well-being (for example, see Fobair et al. 2006; and Burwell, Case, Kaelin & Avis, 2006). However, while such needs have been readily identified, it is still apparent that conversations between clinicians and their patients concerning these needs, seldom occur. Horden and Street for example, suggest that “healthcare professionals in cancer and palliative care settings rarely communicate about patient sexuality and intimacy” (20071, p224). These clinicians also report that on the whole, the information concerning sexuality that has been researched and discussed is usually “limited to fertility status or the capacity for sexual intercourse” (p224).
It is further apparent that the literature is scant as to the reasons why barriers for medical and nursing clinicians continue to exist in the provision of information and opening up the conversation about sex and sexuality even though the knowledge of the needs of patients in this area is increasing. Such obstruction to this occurring an involve a wide range of factors; for example, personal features including discomfort or embarrassment and stereotypical beliefs and attitudes, a heavy workload and consequent lack of time, the cultural diversity or sexual orientation of the patient, a lack of skills, and an expectation that if a woman does not initiate her concerns in this area then there is no need to discuss it (Krebs, 2007).
Horden and Street in their article ‘Let’s talk about sex: Risky business for cancer and palliative care clinicians’ (20072), suggest there are increasing expectations that health care professionals should be able to provide patients with support and information about sexuality and intimacy related to their cancer diagnosis. It is clear however, that this is not occurring to the level required by women who have experienced breast cancer. These clinicians, who at the forefront of the push for increased communication between patients and health-professionals about sex, conducted a three-stage inquiry of 50 cancer patients and 32 health care professionals over a three year period. From this study, they found considerable ‘mismatch’ between the expectations and unmet needs in the degree to which ‘sexuality and intimacy after cancer’ were discussed with patients.
In particular, the results of the investigation suggested that “most patients wanted...to discuss intimate and sexual changes related to cancer at a time and in a manner best suited their individual needs”. Further, they (patients) “believed that their needs were not met” related to “emotional support about how to live with sexual and intimate changes after a cancer diagnosis” (20072, p225).
The manner in which health professionals present themselves to their patients seems to greatly influence the degree to which those patients are likely to discuss sex and sexually-related issues. According to the website www.femalesexualdysfunctiononline.org (developed by a wide range of physicians), patients will feel more comfortable discussing sexual issues if they view their doctor as being friendly, understanding, not uncomfortable, and appears concerned about their (patient’s) sexual well-being. In addition, this website presents research that reveals a 16% increase in patients revealing some form of sexual dysfunction when the doctor makes an active inquiry, over spontaneous admissions by the patient.
Health-care professionals are, of course human and without self-awareness, they are subjected to the same beliefs, biases and stereotypical attitudes as are all people. As such there are potentially a wide range factors that are likely to influence and prevent clinicians from offering psycho-sexual support to their clients (for example, see Kendra, Sundquist, Lesley & Yee, 2003). Perhaps because of the ‘private’ nature of the topic itself (sex), (and the discomfort talking about this subject may cause), sexual issues consequent to breast cancer treatment are frequently not raised because of the health-care provider’s own level of discomfort or embarrassment. This is discussed in depth by Hordern and Street (20072) with them highlighting the providers’ vulnerability related their own sexuality and the need for such clinicians to feel comfortable with their own sexuality prior to raising issues of intimacy and sexuality with their patients.
In a similar manner, there also appears to be some fear attached by clinicians of opening up a ‘Pandora’s box’ (Finestone, 2008), as well as their general inexperience in the area of sexual difficulties. William Petok for example, a university Assistant Clinical Professor in Obstetrics and Gynaecology reveals that clinicians in general, receive very little training in sexual functioning, and as a result (perhaps also combined with their own discomfort), they believe they are unable to respond appropriately (2009). Petok also suggests that because of this limited training health care provider are likely to be unfamiliar with sexual practices or terminology used by patients, again limiting their ability to directly address this area.
Hordern and Street in their various publications (20071, 20072, 20073) also identified a number of other influencing factors such as; ageist attitudes of clinicians with them adopting the view that older women are likely to have a diminished interest in sex, particularly in the face of a life-threatening illness; cultural issues with doctors and others fearing raising sexual issues with those of non-western cultures; and that the responsibility for this is the domain of ‘someone else’. Similarly, there is likely to be considerable difficulty for physicians faced with patients with a sexual orientation other than the more socially acceptable ‘heterosexuality’ (Lee, 2000). This medical practitioner suggests that “biases and prejudices of society are not always left at the door to the examination room and may affect the quality of health care received by patients” (Lee, 2000, p401; Fulbright, 2009). As such, when referring to those with other than a heterosexual orientation, it is likely that clinicians will still be subjected to their own beliefs and bias concerning sexuality, illness, and cancer. Finally, even though some clinicians may clearly acknowledge the potentially devastating psychological and sexual effects of cancer and subsequent treatment processes, they have little to offer to counter such effects. For example, in their Manual of Clinical Oncology, Casciato and Territo clearly spell out “The effects of cancer and its treatment on sexuality are not usually included in assessments and plans of care for patients, nor are they often addressed in patient education.” (2008, p557). It is unfortunate however, that while providing a detailed outline of the various psycho-sexual effects, they make no suggestions for their colleagues to assist their patients in this regard.
While health care professionals may be reticent to address sexuality issues with their patients after a cancer diagnosis, the degree to which the women themselves are uncomfortable should not be underestimated by clinicians, (although it is suggested that it frequently is). Women who have experienced cancer are usually appreciative that they have survived and as such are often reluctant to talk about the negative impact of the psycho-sexual symptoms they may have in their life. Anecdotally, there have been many instances of women feeling guilty if they perceive themselves complaining or even feeling frustrated if healthcare clinicians do not allow time for or give permission to discuss their concerns. Such beliefs and feelings are likely to be strengthened or at least supported when these women are confronted by a health care professional who has not been proactive in their inquiry as to the sexual impact of the disease and treatment (Hordern & Street, 20072). Further, it is likely that given the ‘private’ nature of the topic (‘sex’) many women may be embarrassed to raise the issue with their health care provider. Fulbright (2009) reports that a study in the Journal of American Medical Association revealed that around three-quarters of patients surveyed believe that their sexual health concerns would be dismissed by their doctor and nearly 70% thought that they would cause their doctor to become embarrassed. Another study identified that women had a strong desire to talk about sexuality and intimacy issues but declined for fear of rejection (Krychman, Pereira Carter & Amsterdam 2006).
Finestone (2008) suggests that between 85% and 90% of breast cancer patients seek information on intimacy and sexuality. Yet as identified above, there is an obvious gap in the provision or availability of this information from health care providers to women who have survived breast cancer and are now dealing with related sexual symptoms. Difficulties with sexual functioning can persist long after treatment is completed.
Research has found that women, more than five years after their initial diagnosis, who had undergone chemotherapy, reported a lack of sexual desire, difficulty in arousal and in achieving orgasm which was associated with a higher depression score assessment (Atkins & Fallowfield, 2007). Clearly then, there is a definite need to improve the process in which these women are supported in their psycho-sexual needs.
Overcoming the Barriers: Opening up the Discussion of Sex and Sexual Issues
Sexuality and the impact of cancer and treatment has lead to the medicalisation of sexuality and intimacy. For example, it is now usually the case for clinicians to view patients issues related to sexuality in terms of sexual function or ‘dysfunction’. Subsequent conversations therefore, have been limited to concepts such as fertility and contraception or the ability to have sexual intercourse, instead of ‘sexuality’ being as part of a whole person that is dynamic and connected to self and community. Horden and Street (20071) describe it well when they say;
Instead of it being understood as an ever changing, lived experience affecting the way in which people view themselves, their body and their ability to intimately connect with significant others throughout life.
At present, the approach that appears to be most utilised is the PLISSIT model originally developed in the 1970s (source unknown). This method offers a simple framework for health care professionals untrained in extensive counselling techniques. It allows for the provision of information and support to patients at a level appropriate for the clinician, while determining the areas of need that require referral (Sundquist, 2003).
If sexuality is not seen as a lived experience (Hordern, 1999) by health clinicians, barriers to communicating intimacy and sexuality will continue. As clinicians, there is a need for self-awareness in regards to our own comfort zones, skills, biases and attitudes, as these will affect open communication. Privacy and confidentiality and the building of rapport, and a strong therapeutic alliance Geldard & Geldard, 2005) will help enable women to discuss their thoughts and issues in regards to sexuality.
Self-awareness and knowledge of limitations in the area of sexual health will provide the health professional with the confidence to refer on (with the woman’s permission) as indicated in the PLISSIT model. As Clinical Nurse Specialist in a Menopause Clinic working with women after cancer, when speaking with women and their partner about their sexual issues, I acknowledge that my level of comfort concerning sex and sexual issues is likely to affect the therapeutic interaction I have with my clients. It is the clinician’s level of comfort and ease that gives implicit permission to women, to open up and discuss their sexual concerns, or at the least, assist them to do so when they are ready (Hordern & Street, 20072).
The National Breast and Ovarian Cancer Centre (NBOCC) has been particularly innovative in this area. They currently provide a range of training options for clinicians encouraging them to be more proactive with their patients and to commence discussion of sexual issues as soon as is practicable. In addition, the NBOCC website and the various Cancer Councils in each stated provide a breadth of “information and tips” for patients, their family, and clinicians, related to ‘Life After Breast Cancer’ and other similar diseases (www.nbocc.org.au/survivorship).
The accurate assessment of sexual functioning or taking a sexual history is not just the domain of a sexual counsellor (Hordern, 1999). Often women and their partner may need just reassurance in the way of basic information, understanding, and simplistic practical advice (for example, specific lubricants, and the use of sexual enhancers such as dilators and appropriate ‘sex toys’, Herbenick, Reece, Hollub, Satinsky & Dodge, 2009). This can only occur when sexuality is an accepted part of routine practice within the context of health assessment. As such, a comprehensive and multidisciplinary view or approach to assessment and follow-up care would promote a more positive and proactive approach to sexual well-being. This in turn would encourage more open communication and validation of sexuality and intimacy that is tailored to meet the individual needs of the patient. Such an approach would be considered within the context of the disease including prognosis, age, psycho-social, cultural and personal status (Krychman et al. 2006; Akkerman & Hordern, no year).
The current paper has examined the psycho-sexual impact on women diagnosed with breast cancer. It has shown that this illness itself, together with the treatment process that many women undergo can have a profound effect upon their sexuality and consequently their self-esteem, body image and intimate relationships. While research has identified a significant need for women in this area, this paper has shown that there are significant gaps and inconsistencies in the provision of information and knowledge by health care professionals to their patients.
It is obvious that further research needs to occur focussing on a number of factors that may assist the psycho-sexual issues faced by women after a diagnosis of breast cancer. For example, younger women and sexual enhancers (‘sex toys’) (Krychman et al. 2006; Herbenick, Reece, Hollub, Satinsky & Dodge, 2009), the use of hormonal treatments and breast cancer (Hickey, et al. 2008); and the education of clinicians in the area of the communication of sexuality and sexual issues (Hordern, 20072).
Perhaps the final word in this area should be based on the work of Michael Krychman the Co-director of the Sexual Medicine Program at the Memorial Sloan-Kettering Cancer Centre who has coined the term Sexual Oncology. Krychman is credited with the development of a broadly based holistic approach to assisting women with issues related to their sexuality after cancer:
A multidisciplinary therapeutic approach to address sexual concerns may enable survivors to reclaim their sexuality (2006, 18).
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