The experience of cancer related fertility

With improved cancer survival rates, attention is drawn to long term side effects, their impact on well-being and quality of life and any related need for services. Fertility impairment is a potential outcome for some cancer survivors but there is little research into its impact and none specific to minority ethnic groups. The limited research suggests that decision making about fertility preservation, fertility testing, telling others (including ‘romantic’ partners), use of fertility treatments and parenthood planning are complex and stressful. There is some evidence of an ongoing impact on self and relationships, which have to be managed. This can start from early in the treatment process and may be hidden from service practitioners. Professional unease has also been documented.

There is medical uncertainty about the implications of treatment for patients wishing to become biological parents. This, together with less well understood psychosocial impacts, is leading to cancer patients and professionals rating this area as one of the most difficult to manage. Some research suggests that this may adversely impact on coping with treatment and/or hinder recovery. The lack of research hinders service developments, including culturally sensitive provision, during acute, chronic and follow-up stages. This, CRUK funded research seeks to better understand the comparative psycho-social impact of cancer-related fertility impairment on South Asian and White patients; the relationship between that and the wider cancer experience; decision-making processes around fertility preservation, fertility testing, fertility treatments or other parenthood planning; and to make policy and practice recommendations.

This qualitative study involves interviews with a mixed gender cohort of 60 patients (40 South Asian and 20 White) aged between 18 and 35. The criteria of inclusion are: diagnosis of sarcoma, lymphoma, testicular or breast cancer; reasonable chance of five year survival; childless at diagnosis; not in a major phase of treatment; aware that their fertility might have, or definitely has, been affected. A combination of ten in-depth interviews and four focus groups with a range of professionals will also be undertaken to explore their perceptions and experience of providing care.