Recruitment for this project has now been successfully completed.

About the project

While it is widely recognised that cancer and its treatment can have a significant effect on the quality of life of both people with cancer and their family members, in particular their intimate partner, sexuality is rarely addressed by health professionals. It remains largely invisible within policy and practice guidelines developed to improve the quality of life of people with cancer and their partners. This online survey asked about  experiences of sexuality and intimacy after cancer aimed to find out more information about this topic and, based on the survey's findings, programs of couple interventions will be developed and evaluated.

What were the results of this project?

October 2013: Register4 was able to provide over 390 participants to this study. Overall through all of the researcher's recruitment sources, 425 women with breast cancer, and 193 partners, completed our survey on changes to sexual wellbeing experienced after breast cancer. The majority reported sexual changes resulting from cancer or cancer treatment, including reductions in libido and sexual desire, decreased sexual response and satisfaction, repositioning of sex as a low priority, sexual and bodily pain, and body image concerns (including, scarring, weight changes, and hair loss). These changes were associated with depression and anxiety, and with disruptions to relationships, for many women. In interviews, participants described the impact of sexual changes as “devastating”, “horrible”, and “makes me feel as if I’m not a woman”. Some women reported that their relationship with their partner had ended because of sexual changes following breast cancer. However, a proportion of women reported that they had adapted to sexual changes within their relationship, developing new ways of being intimate if sexual intercourse was painful, and focusing on cuddling, kissing or massage to maintain physical contact with their partner. Good communication within the couple was essential to this re-negotiation of sex – women telling their partner what they wanted, and their partner listening and understanding. We developed a self-help booklet as part of the study, describing sexual changes that can occur after cancer, and strategies women can adopt to address them. The majority of women reported that this resource helped them to understand what was happening to their body sexually, facilitated conversation about sex with their partner, and reduced anxiety about sexual changes. Click here to view the booklet.

The researcher: Professor Jane Ussher

Jane is Professor of Women's Health Psychology in the Centre for Health Research at the University of Western Sydney. She has published widely on the construction and lived experience of health, in particular women's mental health, the reproductive body and sexuality. She is the lead investigator on a number of studies on the experiences of living with cancer from the perspectives of people who have or have had cancer and their partners, including this current study on sexuality and intimacy.

Who was the project for?

People across Australia, 18 years and over who either have, or have had, any type of cancer and/or their intimate partners. You could participate even if your partner does not participate and you didn't have to currently be in a relationship to participate.

What did this project involve?

Participants were asked to complete a one-off survey about their experiences of sexuality and intimacy which took about 30 minutes to complete. The survey asked about different aspects of their sexuality and sexual intimacy, such as how they feel about their sexual relationship, if the onset of cancer has impacted upon their sexuality, how they are feeling emotionally and their sexual needs and experiences. The survey was anonymous so answers were not be able to be identified.

Where was the project conducted?

The survey was conducted online and was run through the Centre for Health Research - School of Medicine, University of Western Sydney.

What publications were achieved as a result of this project?

The researchers are currently writing up the findings of the research to inform clinicians in their supportive care of women with breast cancer. Register4 will publish details of these reports and papers when they are completed.