Sex, sexuality and cancer: let’s break the taboo

Women whose partners accepted their bodily changes after cancer are more likely to feel positive and sexy. Christophe Karaba/EPA

Angelina Jolie has attracted much attention for revealing her recent experience of a double mastectomy. But her personal attractiveness draws attention to a neglected aspect of cancer treatment and survival – sexuality.

As a carrier of the BRCA1 gene, Jolie reduced her risk of breast cancer from an unusually-high 87% to less than 5% through the preventative procedure. And as a woman who has frequently been voted the “most sexy woman alive”, she directly challenges the myth that cancer surgery means the end of sexuality.

“I do not feel any less of a woman,” she wrote in an op-ed in the New York Times. “I feel empowered that I made a strong choice that in no way diminishes my sexuality.”

Jolie is not alone. Recent research conducted at the University of Western Sydney in collaboration with Breast Cancer Network Australia (BCNA) found a significant proportion of women felt sexually attractive post-mastectomy. But around 20% did not, reporting that they felt “maimed”, “grotesque”, “mutilated”, “undesirable”, “deformed”, or like “damaged goods”. These feelings led some women to hide their body from their partner.

One woman said, “I don’t want my husband to see or touch my breast.” Another told us, “I don’t feel like exposing my breast and have my partner touching it and seeing it.”

Many women also reported feeling “like I was a different person”, or “my femininity was ripped off overnight”. This is in line with previous Australian research where some women said they felt like “half a woman” after a mastectomy.

Meet my partner

The response of a woman’s partner is central to her sense of desirability after a mastectomy. Angelina Jolie wrote that her partner Brad Pitt was “loving and supportive” and that the surgery had made them closer.

In our research, women whose partners accepted their bodily changes were more likely to feel positive and sexy. One woman told us, “I worried that my husband wouldn’t love my body as before. He tells me over and over that he loves me even more now. So I have to believe him.”

In contrast, some partners rejected such bodily changes. One man told his wife, “you have mutilated your body”. It’s not surprising that a woman in this situation would feel bad about herself.

Angelina Jolie had a preventative mastectomy, and breast reconstruction, in the absence of cancer. This is a major surgical procedure that requires a period of adjustment.

Women whose mastectomy follows a cancer diagnosis have it much worse. They are dealing with the shock of illness and the impact of a range of cancer treatments on their sexuality. Chemotherapy can cause vaginal dryness, making sex painful or uncomfortable.

It can also cause extreme tiredness, and diminished sexual response or desire.

Everything changes

Fears of cancer returning can cause anxiety and depression, which in turn affects sexual relationships. Many women also have fertility concerns.

For some, changes to sexuality and fertility are the most devastating long-term consequence of cancer. One woman told us: “I feel a sense of loss, as if part of me has died.” Another said, “I felt like my heart had been ripped out. Very empty.”

Changes to sexuality are not confined to women with breast cancer. In a second study we conducted across a range of cancer types (including leukaemia, melanoma, lymphoma, prostate, gynaecological, lung, colorectal, bowel and anal cancers), we found that sexual issues were often at the fore.

Many women reported disinterest in sex, discomfort, and body image concerns. Men reported erectile difficulty, decreased desire, and difficulty with orgasm.

Being single brings additional problems, including anxiety about how to explain a changed body to a new partner. Or fear that cancer will frighten a new partner away.

At the same time, partners of the person with cancer have their own sexual concerns. This can include guilt for still wanting sex when your partner has cancer, feeling tired due to caring, and not wanting to cause discomfort or pain.

The same but different

Sexuality doesn’t have to be negatively affected by cancer. Many people find ways of coping with sexual changes, through developing new sexual practices, or focusing on intimacy rather than sex.

Some couples even find their sex lives are better after cancer, as they spend more time exploring each other. One woman told us, “we spend a bit more time in foreplay, to sidestep the vaginal dryness”. Other people talked of using sex toys, or trying oral sex, or mutual masturbation, if penetration was difficult.

Despite its importance, sexuality is rarely mentioned by health professionals who work with cancer patients. This means that there’s an absence of information and support on how to deal with sexual or body image concerns that stem from cancer-related surgery.

Angelina Jolie has effectively, if unwittingly, put sexuality and cancer on the public agenda. For that we should thank her and applaud her bravery. It will benefit many other women – and men.