During my work as a gynecologist in a breast clinic I often meet women who in one way or another encounter changes in sexuality after breast cancer. Think about: the onset of a premature menopause with vaginal dryness and hot flushes as a result; worsening vaginal dryness in women who are already in menopause; the loss of desire or being too tired to have sex; or the need to delay family planning because of breast cancer treatment. For some patients, these sexual changes have so much impact that they become sexual problems.
The working definition of sexuality is very broad.
Definition of the World Health Organisation (WHO):
“Sexuality is a central aspect of being human throughout life and encompasses sex, gender identities and roles, sexual orientation, eroticism, pleasure, intimacy and reproduction. Sexuality is experienced and expressed in thoughts, fantasies, desires, beliefs, attitudes, values, behaviours, practices, roles and relationships. While sexuality can include all of these dimensions, not all of them are always experienced or expressed. Sexuality is influenced by the interaction of biological, psychological, social, economic, political, cultural, legal, historical, religious and spiritual factors.” (WHO, 2002)
Breast cancer is a very diverse disease. The treatment of breast cancer depends on the characteristics of the tumor (hormone receptor-positive, hormone receptor-negative – or triple negative breast cancer -, HER2 positive, HER2 negative) and on the characteristics of the patient (age, menopausal status, co-morbidities). The main treatments of non-metastatic breast cancer are surgery, radiation, endocrine therapy and chemotherapy. Not everyone needs every treatment and the sequence of therapy also depends on the characteristics of the patient and the tumor. This means that each patient goes through their own breast cancer treatment journey and thus the impact this treatment has on sexuality is different for everyone.
A (premature) menopause causes a decrease in estrogens, as a result there is a reduced blood flow to the vagina. The mucous membranes become thinner and there is less production of vaginal secretions. Due to declining estrogens, there is also less glycogen in the vagina, which means there is less fuel for lactobacilli (which produce lactic acid) and the pH rises. These changes can cause discomfort, burning or itching, all of which can have an impact mental and physical well-being but also sexuality.
Discussing sexuality is still a taboo for patients and caregivers: often a patient first wants to discuss matters that have to do with “survival”, which sometimes leaves little time to discuss “life after” breast cancer. Also sometimes patients dare not to talk about sex or sexuality or think that a doctor does not consider sexuality important enough to spend time on this subject. But also doctors sometimes have difficulty raising this subject because of shame or the inability to offer a suitable solution in case of sexual problems (and that is not so simple indeed).
Nevertheless, it is important to discuss sexuality in the doctor’s office and certainly in a breast clinic. Research shows that:
- There is a growing population of (former) breast cancer patients in Belgium: 10,500 women receive this diagnosis every year and there is an increasing survival after treatment.
- More than half of all patients experience long-term sexual problems after breast cancer diagnosis and treatment.
- A pleasant experience of sexuality and intimacy after breast cancer treatment contributes to a good quality of life.
- For some patients, the sexual problems become such a burden that they interrupt their (often endocrine-) therapy!
- For patients who are not in a relationship, the complaints and concerns regarding sexuality can be so great that they do not dare to start a relationship again.
Reason enough to break the taboo and increase our knowledge of breast cancer and sexuality.
“In Roman mythology, Volupta is the goddess of sexual pleasure. The literal translation of ‘voluptas’ means nothing more than ‘pleasure’ or ‘delight’. But sometimes there is a disturbance in the sexual experience, for example due to the confrontation with breast cancer.”
With this research project “Volupta” we investigate breast cancer and sexuality from different perspectives. We asked a number of (former) breast cancer patients what sexual changes they experienced and how this impacted their experience of sexuality, we started researching how a scar on the breast impacts sexuality and now we are starting a prospective study on what changes in the vagina and when that happens after the diagnosis and treatment of breast cancer. This brings us closer to an oncologically safe way to treat or even prevent symptoms of vaginal dryness.
A joint project with Isala was born – the “Volupta microbiome study”. In this project we will examine 60 premenopausal patients who become menopausal due to breast cancer treatment on vaginal health and experience on sexuality -at various points in their treatment. This is a first in time study where the vaginal microbiome is investigated in the same woman before and after the onset of menopause (in this case a treatment induced menopause). Together we can investigate how the vaginal microbiome changes after menopause and if there are underlying mechanisms in the vaginal microbiome that are important in the development of complaints related to vaginal dryness.
Because the more knowledge we have about the exact changes in the vaginal area, the more we can think about solutions or prevention of vaginal dryness. And the more attention we pay to this topic, the easier it will be for future patients to seek help when sexual changes become a sexual problem.
At the moment patients treated in UZ Leuven can participate in this study, after this has been discussed with them by their treating physician. We are working on opening this study in other breast clinics in Flanders as well.
Who am I?
My name is Nynke Willers. I work as a gynecologist in the breast clinic of Dendermonde. I also am a PhD-researcher at KU Leuven. During my training as a gynecologist and specialist in a breast clinic, I was particularly interested in the sexual complaints that arise during and after breast cancer treatment. With this research I hope to be able to help many patients who experience complaints concerning sexuality. This by breaking the taboo to discuss sexuality, but especially to think about treatment and prevention of vaginal dryness after breast cancer. This research is made possible with the support of Think Pink.