Study of sexuality and fertility in young people with cancer

Every year, more than 2,000 young adults in Sweden receive a cancer diagnosis. For many, the disease and its treatment have consequences that can affect their mental health, intimacy and relationships.

Up to half of all young adults who have been treated for cancer report some form of sexual dysfunction such as reduced sex drive, dry mucous membranes that mean pain during intercourse, and erection and ejaculation problems. In addition to sexual problems, concerns about fertility are common among young adults who have had cancer.

“These are adverse consequences that affect a lot of people. Although treatments have changed and been refined, there can still be distressing side effects. Intimacy, sex and family are matters that are very important in most people’s lives. Whether you have a partner or not, these things are fundamental in our lives,” says Lena Wettergren, Professor of Health Sciences combined with employment as a nurse at Uppsala University Hospital.

Targeting young adults

Since autumn 2025, she and her colleague Claudia Lampic, professor at Umeå University, have been conducting a study that targets young adults (18–39 years) who have had cancer. Participants have access to an Internet-based treatment programme intended to assist them in dealing with sexual problems and their concerns about fertility – two things that are of great importance for their quality of life.

“If you get cancer, survival is paramount, so you might find it difficult to address these issues. But sexual problems can become more difficult to broach with time,” explains Lena Wettergren.

So far, more than 40 people have registered their interest in participating in the programme, developed by the research group Fex-Can. It is 12 weeks long and combines information, personal stories from other young people who have had cancer, questions to reflect on, exercises and a discussion forum.

“The programme is designed to provide knowledge, reduce anxiety, and strengthen the capacity of the participants to manage their problems. The study will evaluate whether the programme can reduce anxiety about fertility and sexual dysfunction and thereby contribute to a better quality of life for young men and women with cancer,” says Lena Wettergren.

Open to anyone having experienced cancer

This is the second iteration of the programme, which has been developed in collaboration with a group that has, or has had, cancer themselves. The programme is open to people between the ages of 18 and 39 who have had cancer in the past five years and who are experiencing problems with their sex life or have concerns about fertility and parenthood. Potential participants register their interest, which is then followed by a short screening interview.

In total, the researchers expect to include about 250 people in this study. They are seeking participants via patient organisations, hospitals and via social media advertising.

“If the programme proves effective, our dream is that it will become open and accessible to everyone. Then it would not have to be done in study form, but could be made accessible to everyone regardless of when they were treated for their cancer,” says Lena Wettergren.

Annica Hulth