The Royal College of Obstetricians and Gynaecologists, the British Fertility Society, and the American Society for Reproductive Medicine all support the concept of providing every patient of reproductive age with accurate information about the potential risk of impaired fertility after treatment for cancer, irrespective of whether local facilities for gamete cryopreservation exist. In reality, the immediate emphasis is often on treatment, with little time available to discuss future fertility or options for fertility preservation. Logistical barriers and timely patient referral (including coordination of care between specialties) can also limit patient access to the available options (2).
Preservation options for young women and girls who require urgent cancer treatment, have no male partner or are unable to undergo hormonal intervention are clearly limited in the best of circumstances. Still, it remains important for clinicians to consider the effects of chemo and/or radiotherapy on future reproductive function.
Our study shows that significant gaps in the information provided to young women diagnosed with cancer exist and suggests a need for an early appointment with a fertility expert.
Previous research (3) considered 'the deep human desire to have a child' a challenge for patients and clinicians alike and highlighted the fact that concerns about fertility are similar in both genders but opportunities for intervention very different. Bury's theory (4) of 'biographical disruption' (the loss of the capacity to anticipate and package one's life according to a pre-existing template) can be experienced as a devastating rupture, which impacts negatively on an individual's psychological health and well-being (5).
In our study, the tension between the clinical (cancer diagnosis and emphasis regarding the urgency of treatment) and the social (in respect of relationship formation, consolidation and reproductive decision-making) was thrown into sharp focus. Young adults (in particular men) who might be in a relatively new relationship were suddenly faced with having conversations about their reproductive intentions and found themselves subject to 'biographical acceleration' as they were plunged into hypothetical and sometimes actual decision-making as a couple (5).
Estimates suggest that in 2010, one in 715 people in the UK had survived cancer during childhood. Healthcare professionals note a growing emphasis on 'quality of life' after cancer survival (6). Yet a recent survey of more than 300 health care practitioners conducted by researchers at the Royal Free Hampstead NHS Trust, found that fewer than 40 percent considered discussion of future fertility in women diagnosed with breast cancer (7).
Such information is indeed timely given the partial review of the National Institute for Health and Clinical Excellence (NICE) guideline on fertility (8) has just been released for consultation. Although the guideline development group considered the effects of cancer on fertility in the review process, its remit was 'to examine the effectiveness of different methods of cryopreservation' in the context of preservation of fertility before starting chemo or radiotherapy. It was disappointing that 'quality of life' and associated fertility did not merit discussion and no qualitative studies were included in the review (9).
Professor Jane Noyes, the lead convener of the Cochrane Qualitative Research Methods Group has noted a growing appreciation for qualitative studies, alongside quantitative research, as part of the evidence base for commissioners and policy makers (10). Indeed the Cochrane Collaboration now acknowledges the limitation imposed on policy and decision-making by using quantitative data alone.
My co-authors and I do not advocate 'cryopreservation for all' and have the utmost respect for the clinician's role in deciding patients' suitability for fertility preservation but we do uphold a multidisciplinary approach to the management of this unique patient group. Such collaboration should permit discussion (considering the qualitative evidence available) and a range of options for patients. To this end, we welcome the recommendations put forward by the NICE review guideline development group.
There is no doubt that the multidisciplinary response has been in accordance with the professional 'guidance' mentioned earlier, however clinicians appear to be unclear as to what constitutes 'experimental' techniques for fertility preservation. The field of 'Onco-Fertility', as it is known, is in a stronger position now than it has been for over a decade. Perhaps we need to consider the three major gaps highlighted by the 'Onco-Fertility Consortium' (2) in the US: surviving cancer (and the importance of expectation of reproductive function and family); science and emerging technology (working together to improve its efficacy); and resource allocation (in supporting a collaborative 'National Business Case' for utility).
Through collaboration, we can educate young people diagnosed with cancer to formulate their own opinions about the science, often portrayed as controversial.