title: Loss, uncertainty, or acceptance: subjective experience of changes to fertility after breast cancer.
abstract: This qualitative study examines the subjective experience of infertility in a large sample of Australian women with breast cancer. Participants were 1830 women, average age 54, who responded to an email invitation to complete an online survey on sexual well-being and fertility concerns after breast cancer. 24.6% (n = 452) reported that cancer had affected their fertility; 21.3% (n = 391) did not know their fertility status. In thematic analysis of open-ended responses provided by 381 women about changes to fertility status, reactions to infertility, and experiences of information and interventions to assist fertility, five themes were identified: 'Negative responses to infertility and early menopause'; 'Sexual changes associated with menopause and infertility'; 'Uncertainty and anxiety about fertility status'; 'Information and fertility preservation'; 'Acceptance of the end of fertility'. These findings confirm previous reports that infertility and premature menopause are a significant cause of anxiety for many women with breast cancer. However, some women closer to natural menopause, or who had completed their families, reported acceptance of changed fertility status. Accounts of deficits in information provision and fertility counselling suggest an urgent need for accessible and comprehensive information about fertility and cancer to be developed and evaluated, as well as education and training of health professionals in addressing fertility concerns following cancer.
authors.affiliation: Centre for Health Research, School of Medicine, University of Western Sydney, Sydney, NSW, Australia.
authors.forename: J
authors.initials: J
authors.lastname: Perz
authors.forename: J
authors.initials: J
authors.lastname: Ussher
authors.forename: E
authors.initials: E
authors.lastname: Gilbert
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000970:Antineoplastic Agents / Q000009:adverse effects; D001007:Anxiety / Q000523:psychology; D001315:Australia; D001943:Breast Neoplasms / Q000523:psychology* / Q000628:therapy; D005260:Female; D006801:Humans; D007247:Infertility, Female / Q000209:etiology / Q000523:psychology*; D008594:Menopause, Premature / Q000523:psychology*; D008875:Middle Aged; D036301:Qualitative Research; D011878:Radiotherapy / Q000009:adverse effects; D060728:Reproductive Health; D012735:Sexual Dysfunction, Physiological / Q000209:etiology / Q000523:psychology; D020018:Sexual Dysfunctions, Psychological / Q000209:etiology / Q000523:psychology; D035501:Uncertainty
chemical_list: D000970:Antineoplastic Agents
keywords: breast cancer; infertility; premature menopause; qualitative; sexuality