Young cancer survivors frequently report long-term sexual problems

Many young adults who have been treated for cancer experience sexual problems. This is shown in a doctoral dissertation at Karolinska Institutet, which also highlights gaps in information provided by the healthcare system.

Each year, approximately 2,000 people aged 18–39 are diagnosed with cancer in Sweden. Most survive their illness, but for many, life continues with long-term consequences. In a new doctoral dissertation, Charlotta Bergström has investigated how sexual problems develop in young adults following cancer and cancer treatment.

The thesis is based on data from the research project Fertility and Sexuality Following Cancer (Fex-Can) and includes just over 1,000 young adults with conditions such as breast cancer, gynecological cancer, testicular cancer, lymphoma, and brain tumors. Participants were followed up with surveys one, three, and five years after diagnosis, and the results were compared with a group of peers without a history of cancer.

Most common in women with breast cancer

The results show that sexual problems were significantly more common among women with breast cancer and gynecological cancer than among women in the comparison group one year after diagnosis. Common issues included reduced sex drive, low satisfaction with their sex life, orgasm problems, and vaginal discomfort. Women who had received more intensive treatment reported more problems.

Sexual problems were common, but they varied depending on diagnosis and treatment.”

Charlotta Bergström, nurse and doctoral student, Department of Women’s and Children’s Health, Karolinska Institutet

For women and men with brain tumors, however, no clear differences were observed compared to the control group. Most people with brain tumors were satisfied with their sex lives, although a smaller proportion reported low libido.

Regardless of diagnosis, sexual problems were linked to emotional distress and a negative body image. At the same time, about half of the women and one-third of the men stated that they did not recall healthcare providers informing them that cancer and treatment can affect their sex lives.

The dissertation also evaluated the web-based self-help program Fex-Can Sex 1.0. The program did not reduce sexual difficulties, but participants found the content relevant and easy to understand, which provides important lessons for future support initiatives.

“Our results show that sexual health needs to become a more natural part of post-cancer follow-up, with information tailored to both the diagnosis and the individual,” says Charlotta Bergström.