Facing the negative impact of cancer treatment on fertility : fertility-related communication and reproductive concerns following a cancer diagnosis

Abstract

Background: Having children is an important part of life for many men and women. However, cancer treatment may have a negative impact on fertility by, for example, affecting eggs or sperm production. In order to safeguard patients’ future ability to have biological children, fertility preservation may be available, such as cryopreservation of sperm or embryo. Even though earlier research show that men and women are positive towards discussing future fertility at the time of diagnosis, many report deficiencies in fertility-related communication and express regret over not having been offered fertility preservation.

Aim: The overall aim of this thesis was to study the perceptions and experiences of fertility-related communication among men and women of reproductive age diagnosed with cancer in Sweden. An additional aim was to investigate the experiences of receiving treatment with a potential negative impact on fertility and how this is experienced over time.

Methods: The thesis is based on two studies: a quantitative survey study among cancer survivors three to seven years after a cancer diagnosis and a qualitative longitudinal interview study among newly diagnosed cancer patients. In Study 1, 484 cancer survivors (328 women and 156 men; 60% response rate) responded to a study-specific questionnaire including standardized instruments for measuring mental health (SF-36) and infertility-related stress (FPI). In Study 2, newly diagnosed cancer patients participated in individual semi-structured interviews at two time-points, a short time after cancer diagnosis (11 women and 10 men) and two years later (9 women and 7 men).

Results: Study 1 showed marked sex differences in recalled fertility-related communication: while the majority of the men had discussed the risk of infertility (80%) and fertility preservation (68%), few women did so (48% and 14%, respectively). In addition, more than half of the men used fertility preservation (54%), while only 2% of the women did so. The majority of the survivors who had a pre-treatment desire to have children still wanted children three to seven years later. In addition, 17% of those who had no pre-treatment desire for children had changed their mind about wanting children after treatment. Study 2 showed that women generally had negative experiences of communicating fertility-related issues, while men felt that they had received extensive information and had been encouraged to bank sperm. Men and women described how the risk of infertility had impacted their experiences over the two years, from being of little concern to affecting decisions concerning future childbearing, causing relationship problems and creating feelings of losing control.

Conclusion: The risk of infertility after cancer may cause reproductive concerns among both men and women, and according to the results women are particularly vulnerable. In view of the complexity of fertility preservation for female cancer patients, clear guidelines and close collaboration between cancer clinics and reproduction clinics may help in the effort to improve fertility-related communication with women of reproductive age.