When cancer is diagnosed in younger patients, there are a number of unique issues that need to be considered that older patients do not face. Fertility is one of the most important concerns reported by adolescent and young adult (AYA) patients as many hope to survive their disease and go on to have children in the future. Research focused on fertility in AYA survivors has increased in recent years, but there remains a great unmet need for comprehensive reproductive health counseling at all stages of the cancer continuum; before treatment begins and in post-treatment survivorship care.
In this study, we explored the fertility-related experiences of AYA survivors who had been diagnosed with cancer during adolescence (15-25 years old) and had completed their treatment by the time of participation.1 We conducted one-on-one interviews and focus groups with 43 AYAs to learn about their awareness of infertility risks, their thoughts about fertility and building a family in the future, and their emotions and concerns surrounding these topics. Following standard guidelines for analyzing this type of qualitative data, we reviewed participants’ responses to identify patterns, develop a thematic framework, and document the frequency and salience of specific topics. We compared themes across gender and age groups to determine whether males vs. females or older vs. younger survivors were different in how they viewed their cancer and fertility experiences.
We found that AYAs reported a range of emotions surrounding their fertility, and multiple strategies for managing their concerns. Females tended to discuss fertility more frequently and showed more distress than males did, particularly when they were uncertain about their infertility risk and reproductive potential. Consistent with the literature,2 males who had banked their sperm prior to treatment felt reassured and worried less about fertility than males who did not bank sperm, though both groups indicated less distress than females. No female participants preserved their fertility and it is unknown whether this would have ameliorated their concerns, though psychosocial benefits of fertility preservation have been reported.3 Both males and females reported concerns about passing on a genetic risk to a child and wondered how infertility would impact their future lives; and females had additional worries about pregnancy-related health risks. Females were also more acutely aware of their reproductive timeline and worried about dating more than their male peers.
A subset of AYA survivors in our study (31% of males and 15% of females) reported minimal or no fertility concerns including those who knew their cancer treatment had led to fertility impairment. We were unable to determine whether these participants had no concerns, had not thought about their risk for infertility, or whether they did not want to discuss their concerns. It is also possible, given their younger age, that some AYAs did not fully realize or appreciate the implications of what fertility damage might mean for their future family-building. This has been reported in prior studies, particularly among male survivors.4 Studies have shown that AYAs who are not initially concerned about their fertility may experience distress at older ages as they begin to pursue long-term romantic relationships, consider parenthood, and face their reproductive and family-building options.5-7
Some participants in our study indicated a desire to avoid thoughts and reminders of (potential) fertility problems. This may be one way AYAs coped, by minimizing or avoiding distressing emotions and prioritizing normalcy. In the short term, this can be an adaptive response. Some AYAs will not experience fertility problems in the future and this will help them avoid unnecessary distress. For others, however, this may prevent them from planning for the future and making important decisions that will set them up to achieve their family-building goals. Females who are at risk for premature menopause, for example, may want to have their fertility evaluated and monitored. If they are found to have a low ovarian reserve but are not yet ready to start their family, it may be appropriate to consider post-treatment fertility preservation options, thereby extending their reproductive window. AYAs who avoid thinking about their fertility may experience premature menopause unexpectedly, without having the opportunity to understand their reproductive health and consider their options.
In some instances, AYAs felt they were too young to worry about their fertility and planned to address such issues in the future. They were confident they would be able to use reproductive technology to successfully fulfill their reproductive goals. Their statements reflected the importance many AYAs place on childbearing, but also a lack of knowledge about reproductive medicine including its limitations and risks.
This study highlights the importance of fertility to AYA survivors, particularly among females, and suggests the need for increased and ongoing discussion about fertility throughout the cancer continuum. Clinicians should provide information about infertility risks, ways to evaluate fertility post-treatment, and fertility preservation options, as well as information about alternative options for family-building such as adoption. Many AYAs will be able to successfully have children and a balanced approach of allowing for hope and optimism, while fostering realistic expectations, is needed. Fertility should be addressed regardless of medical factors and include repeated assessment of patients’ understanding and concerns throughout post-treatment survivorship care. Clinicians should approach such discussions with sensitivity and respect. Increased attention to fertility may help to alleviate AYAs’ distress, facilitate decision-making about options to fulfill their family-building goals in the future, and improve long-term well being in survivorship.
The findings from this study have important implications for how fertility and family-building is managed in post-treatment survivorship care.1 Future work should further evaluate AYAs’ informational and support needs regarding fertility decisions after successfully completing treatment and the most appropriate ways to provide medical and counseling services.
- Benedict C, Shuk E, Ford JS. Fertility Issues in Adolescent and Young Adult Cancer Survivors. J Adolesc Young Adult Oncol. Mar 2016;5(1):48-57.
- Trost L, Brannigan R. Fertility Preservation in Males. In: Woodruff CGaT, ed. Oncofertility Medical Practice: Clinical Issues and Implementation. New York: Springer; 2012:27-50.
- Letourneau JM, Katz PP, Smith JF, Ebbel E, Cedars MI, Rosen MP. The impact of fertility counseling and fertility preservation on long-term psychosocial outcomes in young female cancer survivors. Fertility and Sterility. Sep 2010;94(4):S65-S65.
- Kondapalli LA. Oncofertility: Expanding the parenthood options for life after cancer. Birth Defects Research Part A – Clinical and Molecular Teratology. 2013;97(5):289.
- Society of Assisted Reproductive Technology. IVF Success Rates, National Clinic Summary Report. 2013; https://www.sartcorsonline.com/rptCSR_PublicMultYear.aspx?ClinicPKID=0. Accessed 3/31/2015.
- Crawshaw MA, Sloper P. ‘Swimming against the tide’–the influence of fertility matters on the transition to adulthood or survivorship following adolescent cancer. European journal of cancer care. Sep 2010;19(5):610-620.
- American Cancer Society. Cancer Facts & Figures 2016. Atlanta2016.
Catherine Benedict is a licensed clinical psychologist and Assistant Professor in the Department of Medicine at Hofstra Northwell School of Medicine and the Feinstein Institute for Medical Research in New York. She earned her Ph.D. from the University of Miami with a focus on psycho-oncology. She completed a postdoctoral fellowship at Memorial Sloan Kettering Cancer Center. Her work primarily focuses on the cancer survivorship experience of adolescent and young adult patients and developing evidence-based interventions to support patients making difficult treatment decisions. A central theme of this work is related to fertility and reproductive health issues.
Dr. Ford is an Associate Attending Psychologist in the Department of Psychiatry & Behavioral Sciences and Department of Pediatrics at Memorial Sloan Kettering Cancer Center in New York City. She is a clinical psychologist with training in pediatric psychology, health psychology and psycho-oncology. Dr. Ford’s research interests include the psychosocial and behavioral outcomes of childhood, adolescent and young adult cancer survivors. She has extensive experience with adolescent and young adult (AYA) survivors and has served on several national survivorship-focused committees. She has recently published manuscripts in the areas of attendance at pediatric survivorship clinics, a web-based smoking cessation intervention for adult survivors of pediatric cancers, and general internists’ preferences and knowledge about the care of adult survivors of pediatric cancer.