
“I was keen to go on a clinical trial. I wanted to try new cancer treatments and hopefully help future generations.”
This study looked at issues to do with physical and emotional closeness (intimacy) and sexual problems, to try to improve services for women with breast cancer.
We knew from research that women with breast cancer had problems in their day to day lives such as managing at home, social activities and family issues. One issue that affected many women with breast cancer is difficulties with intimacy and sexuality. We knew that these issues were not always routinely addressed by the care team, either during or after treatment for breast cancer.
In this study, researchers in the Leeds area heard the views of women who had problems with sexuality and intimacy. They asked about the problems they’d had and what kind of help and information they received. They were also interested in finding out what women thought about routine assessment for these areas, and about the questions they might find useful. This study aimed to find out
The team hoped that by doing this research they would be able to improve services for women with breast cancer in the future.
The study team found that there was a lack of information and support for women with sexuality and intimacy issues following breast cancer treatment.
11 women volunteered to take part in this study. The research team asked them about their sexuality and intimacy after their diagnosis and treatment.
When the team looked at what the women said, they found 4 main themes
Sexuality and intimacy problems
The stage of their cancer and the type of treatment had an impact on what sexual problems the women experienced. Although the majority of women experienced several problems there were 5 main types.
All 11 women had had surgery. But it didn’t matter what type of surgery they had, everyone had expressed concerns about their . Those women who had advanced breast cancer seemed less concerned about body image than those who had
.
For some women, an added complication from their surgery was a loss of breast sensation which interfered with their enjoyment of physical intimacy.
Women who had hormone treatment experienced problems with vaginal dryness. This meant that sexual intercourse was extremely painful or impossible.
One woman who had hormone treatment found the side effects of hot flushes quite severe. The anti depressant medication she was prescribed to control the hot flushes stopped her having orgasms.
All the cancer treatments, in particular chemotherapy, often left the women with no desire for sex at all.
Impact on emotions and relationships
How the women felt after their surgery had an effect on their relationships.
The women felt a sense of loss, anger and sadness about the change in their body image. They described it as feeling like a different person, as someone with less confidence and feeling less sexual and less feminine.
Some of the women had ended their relationship with their partner or were considering doing so. Although their breast cancer diagnosis wasn’t the main cause, it did speed up the breakdown of the relationship. These women expressed the need to focus on surviving cancer or felt they were protecting themselves from the emotional pain of not being sexually active.
Ways of coping
There were a variety of ways the women coped with their sexuality and intimacy concerns. Some dealt with it themselves because they felt it was either a private issue, something they just had to deal with, or they didn’t feel like talking to someone else about it.
Women in a stable marriage felt that it was an issue that they and their husbands could deal with jointly.
Some women sought advice from their GP, cancer doctor or nurse and occasionally they were referred to more specialist services. After seeking medical advice, medication and other types of medical interventions were prescribed to help.
A majority of the women had accessed support services such as counselling and support groups. Although these didn’t particularly focus on sexual problems they did find them helpful.
How their experiences could be improved
The women suggested 3 ways that the experience of others could be improved in the future.
The women received a wealth of information when they were diagnosed and said that the information about sexuality had been lost in amongst it all. They wanted more information at the time it was most relevant.
They suggested that support services such as counselling, psycho sexual therapy and couple counselling should be ready available and accessible.
The last suggestion was to include within the healthcare team someone who had specialised knowledge about breast cancer and its affect on sexual function. One woman said that she would like there to be a clinical nurse available with specialist expertise who could be approached by women with both primary and secondary breast cancer.
The study team concluded that for women diagnosed with breast cancer, a routine screening of sexuality and body image issues could help identify those who may need support. The key areas for improving the service to these women are to have someone within the healthcare team with training in sexual problems and clear guidelines for referring women to the appropriate support services.
We have based this summary on information from the team who ran the trial. As far as we are aware, the information they sent us has not been reviewed independently () or published in a medical journal yet. The figures we quote above were provided by the trial team. We have not analysed the data ourselves.
Please note: In order to join a trial you will need to discuss it with your doctor, unless otherwise specified.
Mrs Sally Taylor
Cancer Research UK
NIHR Clinical Research Network: Cancer
University of Leeds
Freephone 0808 800 4040
“I was keen to go on a clinical trial. I wanted to try new cancer treatments and hopefully help future generations.”