Young people with cancer may experience problems with sexuality and fertility

9 December 2022

Woman holding man's hand with her both hands.

Physical changes as a result of a cancer disease are common and can affect sex life and the ability to have children.

Many young adults treated for cancer experience problems in their sex life and worry about their chances of becoming a parent in the future. The research programme Fex-Can – Fertility and sexuality following cancer – investigates how widespread these problems are and develops methods to help those affected.

“Intimacy and sex are fundamental aspects of people's lives, and it is therefore important to be able to offer help with any treatment-related problems. Parenthood is also something that most people expect to be part of their life, and if cancer treatment leads to limited opportunities to start a family then it is very important to be clear about this so that patients can examine alternatives and move on,” explains Lena Wettergren, Professor at the Department of Public Health and Caring Sciences and one of the leaders of the Fex-Can programme.

Fex-Can comprises four different projects. In one of them, Fex-Can Young Adult, the researchers have identified 1,010 young adults aged 18–39 years who were diagnosed in 2016–17 with testicular, breast, ovarian and cervical cancer, as well as brain tumours and lymphoma. Starting 1.5 years after diagnosis, the participants have been asked to complete questionnaires at regular intervals. In another project, the focus is on all young adults in Sweden who had cancer during their childhood; 2,500 have participated.

Portrait of Lena Wettergren
Lena Wettergren, Professor at the Department of
Public Health and Caring Sciences.
Photo: Mikael Wallerstedt

“We have asked questions about sexual function, as well as about concerns regarding parenthood and the possibility of having children. We have also assessed feelings in relation to their own body, whether they dare to show themselves naked and so on. We also examine health-related quality of life, for example physical function and whether they are hindered by various symptoms. In addition, we want to find out if anyone within health care has raised questions about sexuality and fertility with them,” continues Wettergren.

Sexual problems could include dry mucous membranes, difficulty getting an erection or pain when being touched.

Web-based self-help programme

Those who stated that they experienced major sexual problems or fertility distress were invited to participate in a web-based self-help programme. The programme aims to create an understanding of the negative physical effects that the current cancer and treatment may have, but also what can be done to enhance the person’s quality of life and help them feel more comfortable with their body. For example, there are exercises to increase participants’ acceptance of their body, which may have undergone changes. It is important for people to understand that they are not alone in their experiences.

Having negative feelings about your body or believing that other people have a much better sex life is common even among people who have never had cancer. To what extent are these issues purely due to physical changes and how many have psychological causes?

“That is difficult to answer, but in our statistical models we see a connection linked to diagnosis and treatment whereby those who have received more intensive treatment have more sexual problems. I remember a woman who told me that she and her husband had a good sex life before she got cancer, but when she started endocrine, her mucous membranes became so fragile that it was painful to even wear underwear. People who are worried or depressed more often report having sexual problems,” notes Wettergren.

More problems after having cancer

The research results published so far show that women who have cancer as young adults have more sexual problems than women of the same age who haven’t had cancer. Among people who had childhood cancer, few differences were seen when compared to people of the same age who had no experience of cancer, but the researchers found that erectile problems were more common among men who had had childhood cancer than among those who had never had cancer.

“In both those who had childhood cancer and those who had cancer as young adults, we see that the results are related to the intensity of treatment. Those who underwent more intensive treatment have more sexual problems, and it is therefore particularly important to follow up that group,” explains Wettergren.

During the years that she has worked on Fex-Can, Wettergren has witnessed how fertility and sexuality are increasingly being addressed within cancer care.

“We conducted a study in 2012 in which men and women were asked if anyone had brought up the issue of fertility with them, and 80 percent of the men but only 50 percent of the women remembered the issue having been discussed. Now, most of the participants (80%) in our new study, both men and women, had received information about the treatment's possible impact on fertility, so things have improved. And I would say I’m convinced that issues surrounding sex are handled much more effectively within cancer care today,” adds Wettergren.

Fex-Can Facts

The Fex-Can research programme examines the sexual and reproductive health of young adults diagnosed with cancer before the age of 40 and evaluates the effectiveness of web-based self-help programmes designed to reduce sexual problems and fertility distress. The research programme consists of four different parts.

Fex-Can Young Adult
Young people diagnosed with breast, ovarian, cervical or testicular cancer, as well as lymphoma and brain tumours, complete questionnaires about how they view their body, their sex life, the state of their health, whether they feel worried about fertility and parenthood, and whether they feel depressed. The participants are followed for several years. Those who had major sexual problems or fertility distress were invited to participate in a web-based self-help programme.

Fex-Can Childhood
Young people who had cancer during childhood completed a questionnaire similar to that given to Fex-Can Young Adult participants. The answers are compared to those of a control group in which the participants did not have cancer. Those who stated most sexual problems/worries about the possibility of having children were invited to participate in a web-based self-help programme.

Co-creation
An ongoing collaboration between the researchers and a group of people who have either had cancer themselves or are mothers of young people who have had cancer. They contribute with their experiences and participated in the development of the self-help programmes.

Fex-Talk
A short training course involving role play aimed to enhance nurses’ readiness to raise issues of sexuality and fertility with their patients.

Fex-Can is run by Uppsala University and Umeå University and is funded by the Swedish Research Council, the Swedish Cancer Society, the Swedish Childhood Cancer Fund, Forte and the Cancer Research Funds of Radiumhemmet.