Abstract
OBJECTIVE: To understand the influence of cancer-related infertility on women's long-term distress and quality of life. Women diagnosed at age 40 or less with invasive cervical cancer, breast cancer, Hodgkin disease, or non-Hodgkin lymphoma were interviewed an average of 10 years later. We predicted that women whose desire for a child at diagnosis remained unfulfilled would be significantly more distressed. METHODS: Participants completed a semi-structured phone interview, including the SF-12® , Brief Symptom Inventory-18, Impact of Events Scale (IES), Reproductive Concerns Scale (RCS), brief measures of marital satisfaction or comfort with dating, sexual satisfaction, and menopause symptoms. RESULTS: Of 455 women contacted by phone, 240 (53%) participated. Seventy-seven women had wanted a child at diagnosis but did not conceive subsequently (38 remaining childless and 39 with secondary infertility). Even controlling for other psychosocial and health factors, this group had higher distress about infertility (RCS) (p<0.001), had more intrusive thoughts about infertility, and used more avoidance strategies when reminded of infertility (IES) (p<0.001). Childless women were the most distressed. Women with adopted or stepchildren were intermediate, and those with at least one biological child were least distressed. Infertility-related distress did not differ significantly by cancer site. CONCLUSIONS: Even at long-term follow-up, distress about interrupted childbearing persists, particularly in childless women. Social parenthood buffers distress somewhat, but not completely. Not only is it important to offer fertility preservation before cancer treatment, but interventions should be developed for survivors to alleviate unresolved grief about cancer-related infertility.