Sexuality needs to be a central aspect of the breast cancer agenda, and nurses need to be empowered to discuss it, writes Jane Ussher.
Changes to sexual wellbeing can be one of the most problematic aspects of life post-breast cancer. Research has shown that when compared with healthy same-aged women, individuals with breast cancer experience lower levels of sexual satisfaction and more difficulty maintaining their sexual life. Common problems include sexual pain, fatigue, decreased vaginal lubrication, nausea, hot flushes, night sweats, vomiting, vaginal irritation or atrophy, dyspareunia, decreased sexual interest, desire or arousal, and numbness in previously sensitive breasts.
This is illustrated by the findings of a recent study we conducted at the University of Western Sydney, commissioned by Breast Cancer Network Australia (BCNA). In surveys completed by 2210 individuals with breast cancer, 78 per cent reported decreases in the frequency of sex, 71 per cent decreased interest in sex, 73 per cent felt less desirable, 44 per cent felt uncomfortable exposing their body, and 38 per cent experienced a loss of self-confidence.
A significant proportion of women in our study also reported that breast cancer had affected their sexual relationship, with 24 per cent saying it was affected 'dramatically' and 26 per cent 'considerably'. As one participant said, "I went from high libido to no libido or interest at all; my husband replaced me in less than two months." c reported as having impacted on sexual well-being were: tiredness (71 per cent), vaginal dryness (63 per cent), hot flushes (51 per cent), feeling unattractive (51 per cent) and weight gain (48 per cent), which is contrary to the oft held belief that changes to body image are the major cause of sexual wellbeing concerns after breast cancer.The consequences of these changes for psychological wellbeing were considerable, with the majority of women describing them as "devastating", "depressing," or "shocking and unexpected".
However, despite these concerns, 65 per cent of participants had not spoken to anyone about changes to their sexual wellbeing or relationships since the onset of their breast cancer. Also, while the majority of respondents wanted to receive information about sexual wellbeing, nearly two thirds had not received any, suggesting that information needs are not being met. In order to understand why this is so, we conducted a parallel survey with 159 health professionals who work in the field of breast cancer.
The majority responded that sexual wellbeing is a 'very important' (89 per cent) issue, with nursing (90 per cent) and allied health professionals (94 per cent) more likely to endorse this view than doctors (57 per cent). Despite these findings, less than a third of health professionals reported 'always' addressing the issue of sexual wellbeing with women, with most health professionals only 'sometimes' addressing it.
Whilst most nurses (61 per cent) indicated that they raise the issue of sexual wellbeing as part of their standard practice, only 29 per cent of doctors did so, with the majority of doctors (85 per cent) saying that they would only discuss sexuality if it is raised by the woman or her partner. This is problematic in light of recent research which has shown that people with cancer believe that the onus should be on health professionals to raise the issue with them. Nurses also received the highest satisfaction rating from women with breast cancer if they do discuss sexuality (60 per cent), compared to satisfaction ratings given to GPs (38 per cent), and oncologists (33 per cent), suggesting that nurses' willingness to discuss the sexuality is appreciated by women.
An overwhelming majority of health professionals surveyed reported that they would like further information and training about sexual wellbeing in the context of cancer, and in particular, how to raise the issue of sexuality with women. As one Breast Care Nurse responded, "With any conversation about sexual wellbeing, but particularly when people are really vulnerable and their body image is so hugely changed, having that conversation about what is normal and coming into that space of self-acceptance is really important. It would be great to have a resource to use as a conversation starter."
In this vein, BCNA have developed a sexual wellbeing resource, based on the findings of our research. The resource will also be distributed widely to women and health professionals, and will be available through Relationships Australia's services. Sexuality needs to be a central aspect of the breast cancer agenda, and nurses need to be empowered to discuss it, enabling them to support women. This resource is a further step in that direction.
Jane Ussher is a professor of Women's Health psychology at the University of Western Sydney.
BCNA's sexual wellbeing resource and the full report is available for download at www.bcna.org.au
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