Facing the unknown: uncertain fertility in young adult survivors of childhood cancer



The purpose of this research was to describe the challenges young adult childhood cancer survivors (ACCS) experience of living with an unknown fertility status.


In this qualitative study, we analyzed data from in-depth interviews with 25 ACCS (15 females, 10 males) using content-driven inductive thematic analysis and constant comparative techniques.


Three themes provide insight into ACCS’ experiences of living with an uncertain fertility status. (1) The marked psychological burden, which included fear, worry, anxiety, and sadness, was ubiquitous. (2) Romantic relationships were negatively affected and entailed fear of disappointing one’s partner, the difficulty of discussing fertility issues, and shying away from romantic relationships. (3) Communication challenges with healthcare providers were apparent across the cancer trajectory, made worse by provider knowledge gaps and dismissal of fertility concerns. (4) Well-known gender stereotypes about pregnancy and childrearing were replicated, while the emotional and life impacts that uncertain fertility could exert on males were minimized.


This study provides beginning insights into the experiences of young ACCS as they navigate an unknown fertility status and highlights existing gaps in fertility-related healthcare services.

Implications for Cancer Survivors

Uncertain fertility has implications for survivors’ wellbeing that remain poorly addressed by the existing structure of cancer survivor and fertility services. Assessing and addressing the fertility-related needs of ACCS will continue to be a vital component of patient-centered care in the future, and research to develop comprehensive support, resources, and processes of care are vital to meet this priority need.

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  1. 1.

    Statistics Canada. Canadian cancer statistics 2016. Canadian Cancer Society: Toronto, ON; 2016.

    Google Scholar 

  2. 2.

    Green DM, Kawashima T, Stovall M, Leisenring W, Sklar CA, Mertens AC, et al. Fertility of female survivors of childhood cancer: a report from the childhood cancer survivor study. J Clinic Oncol. 2009;27(16):2677–85.

    CAS  Google Scholar 

  3. 3.

    Green DM, Kawashima T, Stovall M, Leisenring W, Sklar CA, Mertens AC, et al. Fertility of male survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. J Clinic Oncol. 2010;28(2):332–9.

    Google Scholar 

  4. 4.

    Chow EJ, Stratton KL, Leisenring WM, Oeffinger KC, Sklar CA, Donaldson SS, et al. Pregnancy after chemotherapy in male and female survivors of childhood cancer treated between 1970 and 1999: a report from the Childhood cancer Survivor Study cohort. Lancet Oncol. 2016;17(5):567–76.

    PubMed  PubMed Central  Google Scholar 

  5. 5.

    Practice Committee of the American Society for Reproductive Medicine. Definitions of infertility and recurrent pregnancy loss: a committee opinion. Fertility and Sterility. 2013;99(1):63.

  6. 6.

    Barton SE, Najita JS, Ginsburg ES, Leisenring WM, Stovall M, Weathers RE, et al. Infertility, infertility treatment, and achievement of pregnancy in female survivors of childhood cancer: a report from the Childhood Cancer Survivor Study cohort. Lancet Oncol. 2013;14(9):873–81.

    PubMed  Google Scholar 

  7. 7.

    Children’s Oncology Group. Long-term follow-up guidelines for survivors of childhood, adolescent and young adult cancers, Version 4.0. 2013. 2015.

  8. 8.

    Levine JM, Whitton JA, Ginsberg JP, Green DM, Leisenring WM, Stovall M, et al. Nonsurgical premature menopause and reproductive implications in survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. Cancer. 2018;124(5):1044–52.

    PubMed  PubMed Central  Google Scholar 

  9. 9.

    Dillon KE, Gracia CR. Pediatric and young adult patients and oncofertility. Curr Treat Options in Oncol. 2012;13(2):161–73.

    Google Scholar 

  10. 10.

    Schwartz LA, Mao JJ, DeRosa BW, Ginsberg JP, Hobbie WL, Carlson CA, et al. Self-reported health problems of young adults in clinical settings: survivors of childhood cancer and healthy controls. J Am Board Fam Med. 2010;23(3):306–14.

    PubMed  PubMed Central  Google Scholar 

  11. 11.

    Chemaitilly W, Cohen LE. Endocrine late-effects of childhood cancer and its treatments. Eur J Endocrinol. 2017;176(4):183–203.

    Google Scholar 

  12. 12.

    Wasilewski-Masker K, Seidel K, Leisenring W, Mertens A, Shnorhavorian M, Ritenour C, et al. Male infertility in long-term survivors of pediatric cancer: a report from the childhood cancer survivor study. J Cancer Surviv. 2014;8(3):437–47.

    CAS  PubMed  PubMed Central  Google Scholar 

  13. 13.

    Zebrack BJ, Casillas J, Nohr L, Adams H, Zeltzer LK. Fertility issues for young adult survivors of childhood cancer. Psycho-Oncol. 2004;13(10):689–99.

    Google Scholar 

  14. 14.

    Gorman JR, Bailey S, Pierce JP, Su HI. How do you feel about fertility and parenthood? The voices of young female cancer survivors. J Cancer Surviv. 2012;6(2):200–9.

    PubMed  Google Scholar 

  15. 15.

    Lehmann V, Nahata L, Ferrante AC, Hansen-Moore JA, Yeager ND, Klosky JL, et al. Fertility-related perceptions and impact on romantic relationships among adult survivors of childhood cancer. J Aolesc Young Adul Oncol. 2018;7(4):409–14.

    Google Scholar 

  16. 16.

    Crawshaw MA, Sloper P. ‘Swimming against the tide’–the influence of fertility matters on the transition to adulthood or survivorship following adolescent cancer. Eur J Cancer Care. 2010;19(5):610–20.

    CAS  Google Scholar 

  17. 17.

    Hohmann C, Borgmann-Staudt A, Rendtorff R, Reinmuth S, Holzhausen S, Willich SN, et al. Patient counselling on the risk of infertility and its impact on childhood cancer survivors: results from a national survey. J Psychosoc Oncol. 2011;29(3):274–85.

    PubMed  Google Scholar 

  18. 18.

    Nilsson J, Jervaeus A, Lampic C, Eriksson L, Widmark C, Armuand G, et al. ‘Will I be able to have a baby?’ Results from online focus group discussions with childhood cancer survivors in Sweden. Hum Reprod. 2014;29(12):2704–11.

    CAS  PubMed  PubMed Central  Google Scholar 

  19. 19.

    Schmidt R, Richter D, Sender A, Geue K. Motivations for having children after cancer–a systematic review of the literature. Eur J Cancer Care. 2016;25(1):6–17.

    CAS  Google Scholar 

  20. 20.

    Antal Z, Sklar CA. Gonadal function and fertility among survivors of childhood cancer. Endocrin Metab Clin. 2015;44(4):739–49.

    Google Scholar 

  21. 21.

    Lehmann V, Chemaitilly W, Lu L, Green DM, Kutteh WH, Brinkman TM, et al. Gonadal functioning and perceptions of infertility risk among adult survivors of childhood cancer: a report from the St Jude Lifetime Cohort Study. J Clin Oncol. 2019;37(11):893–902.

    CAS  PubMed  PubMed Central  Google Scholar 

  22. 22.

    Cherven BO, Mertens A, Wasilewski-Masker K, Williamson R, Meacham LR. Infertility education: experiences and preferences of childhood cancer survivors. J Ped Oncol Nurs. 2016;33(4):257–64.

    Google Scholar 

  23. 23.

    Halliday LE, Boughton MA, Kerridge I. Mothering and self-othering: the impact of uncertain reproductive capability in young women after hematological malignancy. Health Care Women Int. 2014;35(3):249–65.

    PubMed  Google Scholar 

  24. 24.

    Domingues TS, Rocha AM, Serafini PB. Tests for ovarian reserve: reliability and utility. Curr Opin Obstet Gyn. 2010;22(4):271–6.

    Google Scholar 

  25. 25.

    De Jonge C. Semen analysis: looking for an upgrade in class. Fertil Steril. 2012;97(2):260–6.

    PubMed  Google Scholar 

  26. 26.

    Lehmann V, Ferrante AC, Winning AM, Gerhardt CA. The perceived impact of infertility on romantic relationships and singlehood among adult survivors of childhood cancer. Psycho-Oncol. 2019;28(3):622–8.

    Google Scholar 

  27. 27.

    Howard AF, Goddard K, De Bibiana JT, Pritchard S, Olson R, Kazanjian A. Adult childhood cancer survivors’ narratives of managing their health: the unexpected and the unresolved. J Cancer Surviv. 2016;10(4):711–25.

    PubMed  PubMed Central  Google Scholar 

  28. 28.

    Malterud K, Siersma VD, Guassora AD. Sample size in qualitative interview studies: guided by information power. Qual Health Res. 2016;26(13):1753–60.

    Google Scholar 

  29. 29.

    Oliffe JL, Greaves L. Designing and conducting gender, sex, and health research. Thousand Oaks, California: SAGE Publications, Inc; 2012.

    Google Scholar 

  30. 30.

    Lyons AC. Masculinities, femininities, behaviour and health. Soc Personal Psychol Compass. 2009;3(4):394–412.

    Google Scholar 

  31. 31.

    Gannon K, Glover L, Abel P. Masculinity, infertility, stigma and media reports. Soc Sci Med. 2004;59(6):1169–75.

    PubMed  Google Scholar 

  32. 32.

    Burton M. Negotiating masculinity: how infertility impacts hegemonic masculinity. Laurier Undergraduate J Arts. 2014;1(1):49–57.

    Google Scholar 

  33. 33.

    Gurney JG, Krull KR, Kadan-Lottick N, Nicholson HS, Nathan PC, Zebrack B, et al. Social outcomes in the Childhood Cancer Survivor Study cohort. J Clin Oncol. 2009;27(14):2390–5.

    PubMed  PubMed Central  Google Scholar 

  34. 34.

    Mackie E, Hill J, Kondryn H, McNally R. Adult psychosocial outcomes in long-term survivors of acute lymphoblastic leukaemia and Wilms’ tumour: a controlled study. Lancet. 2000;355(9212):1310–4.

    CAS  PubMed  Google Scholar 

  35. 35.

    Stam H, Grootenhuis MA, Last BF. The course of life of survivors of childhood cancer. Psycho-Oncol. 2005;14(3):227–38. https://doi.org/10.1002/pon.839.

    CAS  Article  Google Scholar 

  36. 36.

    Frobisher C, Lancashire ER, Winter DL, Jenkinson HC, Hawkins MM. Long-term population-based marriage rates among adult survivors of childhood cancer in Britain. Int J Cancer. 2007;121(4):846–55.

    CAS  PubMed  Google Scholar 

  37. 37.

    Van Dijk E, Van Dulmen-den Broeder E, Kaspers G, Van Dam E, Braam K, Huisman J. Psychosexual functioning of childhood cancer survivors. Psycho-Oncol. 2008;17(5):506–11.

    Google Scholar 

  38. 38.

    Bober SL, Zhou ES, Chen B, Manley PE, Kenney LB, Recklitis CJ. Sexual function in childhood cancer survivors: a report from Project REACH. J Sex Med. 2013;10(8):2084–93.

    PubMed  Google Scholar 

  39. 39.

    Zebrack BJ, Foley S, Wittmann D, Leonard M. Sexual functioning in young adult survivors of childhood cancer. Psycho-Oncol. 2010;19(8):814–22.

    Google Scholar 

  40. 40.

    Dieluweit U, Debatin KM, Grabow D, Kaatsch P, Peter R, Seitz DC, et al. Social outcomes of long-term survivors of adolescent cancer. Psycho-Oncol. 2010;19(12):1277–84.

    Google Scholar 

  41. 41.

    Barrera M, Shaw AK, Speechley KN, Maunsell E, Pogany L. Educational and social late effects of childhood cancer and related clinical, personal, and familial characteristics. Cancer. 2005;104(8):1751–60. https://doi.org/10.1002/cncr.21390.

    Article  PubMed  Google Scholar 

  42. 42.

    Boman KK, Hornquist L, De Graaff L, Rickardsson J, Lannering B, Gustafsson G. Disability, body image and sports/physical activity in adult survivors of childhood CNS tumors: population-based outcomes from a cohort study. J Neuro-Oncol. 2013;112(1):99–106. https://doi.org/10.1007/s11060-012-1039-5.

    Article  Google Scholar 

  43. 43.

    Howard AF, De Bibiana JT, Smillie K, Goddard K, Pritchard S, Olson R, et al. Trajectories of social isolation in adult survivors of childhood cancer. J Cancer Surviv. 2014;8(1):80–93.

    PubMed  Google Scholar 

  44. 44.

    Jacobs LA, Pucci DA. Adult survivors of childhood cancer: the medical and psychosocial late effects of cancer treatment and the impact on sexual and reproductive health. J Sex Med. 2013;10:120–6.

    PubMed  Google Scholar 

  45. 45.

    Van Dorp W, Mulder RL, Kremer LC, Hudson MM, Van Den Heuvel-Eibrink MM, Van Den Berg MH, et al. Recommendations for premature ovarian insufficiency surveillance for female survivors of childhood, adolescent, and young adult cancer: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group in collaboration with the PanCareSurFup Consortium. J Clin Oncol. 2016;34(28):3440–50.

    PubMed  PubMed Central  Google Scholar 

  46. 46.

    Salih SM, Elsarrag SZ, Prange E, Contreras K, Osman RG, Eikoff JC, et al. Evidence to incorporate inclusive reproductive health measures in guidelines for childhood and adolescent cancer survivors. J Pediatr Adol Gynec. 2015;28(2):95–101.

    Google Scholar 

  47. 47.

    Goossens J, Delbaere I, Van Lancker A, Beeckman D, Verhaeghe S, Van Hecke A. Cancer patients’ and professional caregivers’ needs, preferences and factors associated with receiving and providing fertility-related information: a mixed-methods systematic review. Int J Nurs Studies. 2014;51(2):300–19.

    Google Scholar 

  48. 48.

    Miers M. Developing an understanding of gender sensitive care: exploring concepts and knowledge. J Adv Nurs. 2002;40(1):69–77.

    PubMed  Google Scholar 

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Ms. Kelly Newton received a Studentship Award from the Canadian Centre for Applied Research in Cancer Control to conduct this research.

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Correspondence to A. Fuchsia Howard.

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All procedures performed in this study were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. This article does not contain any studies with animals performed by any of the authors.

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Newton, K., Howard, A.F., Thorne, S. et al. Facing the unknown: uncertain fertility in young adult survivors of childhood cancer. J Cancer Surviv 15, 54–65 (2021). https://doi.org/10.1007/s11764-020-00910-x

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  • Childhood cancer
  • Cancer survivorship
  • Oncology
  • Late effects
  • Fertility
  • Infertility
  • Qualitative