There are significant gaps in the information women receive about their future fertility following cancer diagnosis, suggests a new paper published today (30 May) in BJOG: An International Journal of Obstetrics and Gynaecology.
Infertility can be a side-effect of cancer treatment and there are increasing numbers of people of reproductive age undergoing such treatment.
This study - led by the University of Aberdeen and NHS Grampian - looks at perceptions and use of fertility preservation techniques in both men and women of reproductive age who have recently been diagnosed with cancer.
It is the first study to explore the experience of discussing future fertility at the time of cancer diagnosis amongst younger men and women.
Sixteen men and 18 women aged 17-49 took part along with 15 health professionals concerned in cancer care. Patients were receiving treatment for blood related and other cancers between August 2008 and June 2010.
Patients were interviewed soon after their first consultation after a diagnosis of cancer had been made. Topics discussed included: patients' perceptions and understanding of the initial diagnosis, the prognosis and their future reproductive choices; perceived quality and source of information received, communication and support; and the role of partners, family members, friends and healthcare professionals.
In addition, staff were asked about their opinions on the information given to younger people with cancer, their knowledge and views of the treatments available with respect to fertility preservation and their perceptions of patients' priorities.
The paper found that almost all of the patients had been given written information about cancer treatment, which included a small section on fertility preservation.
Men and women were given different information reflecting the varying fertility preservation options available, perceived success rates and subsequent delay in accessing cancer treatment.
Men were actively encouraged to consider storage of sperm, even if they had children already. Nearly all had a discussion with staff about sperm banking and a local protocol was in place for immediate referral.
However, in contrast, few women interviewed could remember fertility preservation being discussed and there was no protocol in place.
From the staff interviews, the main reason why staff did not discuss fertility preservation with the majority of women was their belief that treatment was perceived to be more urgent. The study also found that health professionals did not discuss future fertility in detail because they felt patients were given a wealth of information during their first visit and that fertility would not be affected if treatment using first line drugs was successful.
Valerie Peddie, Fertility Nurse Specialist/Research Midwife, School of Medicine and Dentistry, University of Aberdeen, and co-author of the paper said: "It has been widely argued that at the time of diagnosis, patients should be provided with accurate information about the potential risk of impaired fertility after treatment for cancer irrespective of whether local facilities for gamete cryopreservation exist.
"However in reality, the immediate emphasis is often on treatment, with little time available to discuss future fertility or options for fertility preservation.
"Our study has demonstrated significant gaps in the information provided to young women diagnosed with cancer and suggests the need for an early appointment with a fertility expert."
BJOG Deputy Editor-in-Chief, Pierre Martin-Hirsch, added: "This is a unique study as it looks specifically at younger men and women's experiences however it is a small scale study and more research needs to be conducted in a larger population. Following that care pathways should be developed looking at fertility and cancer treatment."