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Published in: Journal of Cancer Survivorship 1/2021

01-02-2021 | Fertility

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

Authors: Kelly Newton, A. Fuchsia Howard, Sally Thorne, Mary T. Kelly, Karen Goddard

Published in: Journal of Cancer Survivorship | Issue 1/2021

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Abstract

Purpose

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

Methods

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.

Results

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.

Conclusion

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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Literature
1.
go back to reference Statistics Canada. Canadian cancer statistics 2016. Canadian Cancer Society: Toronto, ON; 2016. Statistics Canada. Canadian cancer statistics 2016. Canadian Cancer Society: Toronto, ON; 2016.
2.
go back to reference 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. 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.
3.
go back to reference 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. 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.
4.
go back to reference 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.PubMedPubMedCentral 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.PubMedPubMedCentral
5.
go back to reference 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. 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.
go back to reference 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 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
7.
go back to reference Children’s Oncology Group. Long-term follow-up guidelines for survivors of childhood, adolescent and young adult cancers, Version 4.0. 2013. 2015. Children’s Oncology Group. Long-term follow-up guidelines for survivors of childhood, adolescent and young adult cancers, Version 4.0. 2013. 2015.
8.
go back to reference 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.PubMedPubMedCentral 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.PubMedPubMedCentral
9.
go back to reference Dillon KE, Gracia CR. Pediatric and young adult patients and oncofertility. Curr Treat Options in Oncol. 2012;13(2):161–73. Dillon KE, Gracia CR. Pediatric and young adult patients and oncofertility. Curr Treat Options in Oncol. 2012;13(2):161–73.
10.
go back to reference 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.PubMedPubMedCentral 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.PubMedPubMedCentral
11.
go back to reference Chemaitilly W, Cohen LE. Endocrine late-effects of childhood cancer and its treatments. Eur J Endocrinol. 2017;176(4):183–203. Chemaitilly W, Cohen LE. Endocrine late-effects of childhood cancer and its treatments. Eur J Endocrinol. 2017;176(4):183–203.
12.
go back to reference 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.PubMedPubMedCentral 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.PubMedPubMedCentral
13.
go back to reference 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. 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.
14.
go back to reference 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 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
15.
go back to reference 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. 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.
16.
go back to reference 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. 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.
17.
go back to reference 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 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
18.
go back to reference 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.PubMedPubMedCentral 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.PubMedPubMedCentral
19.
go back to reference 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. 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.
20.
go back to reference Antal Z, Sklar CA. Gonadal function and fertility among survivors of childhood cancer. Endocrin Metab Clin. 2015;44(4):739–49. Antal Z, Sklar CA. Gonadal function and fertility among survivors of childhood cancer. Endocrin Metab Clin. 2015;44(4):739–49.
21.
go back to reference 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.PubMedPubMedCentral 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.PubMedPubMedCentral
22.
go back to reference 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. 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.
23.
go back to reference 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 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
24.
go back to reference Domingues TS, Rocha AM, Serafini PB. Tests for ovarian reserve: reliability and utility. Curr Opin Obstet Gyn. 2010;22(4):271–6. Domingues TS, Rocha AM, Serafini PB. Tests for ovarian reserve: reliability and utility. Curr Opin Obstet Gyn. 2010;22(4):271–6.
25.
go back to reference De Jonge C. Semen analysis: looking for an upgrade in class. Fertil Steril. 2012;97(2):260–6.PubMed De Jonge C. Semen analysis: looking for an upgrade in class. Fertil Steril. 2012;97(2):260–6.PubMed
26.
go back to reference 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. 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.
27.
go back to reference 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.PubMedPubMedCentral 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.PubMedPubMedCentral
28.
go back to reference Malterud K, Siersma VD, Guassora AD. Sample size in qualitative interview studies: guided by information power. Qual Health Res. 2016;26(13):1753–60. Malterud K, Siersma VD, Guassora AD. Sample size in qualitative interview studies: guided by information power. Qual Health Res. 2016;26(13):1753–60.
29.
go back to reference Oliffe JL, Greaves L. Designing and conducting gender, sex, and health research. Thousand Oaks, California: SAGE Publications, Inc; 2012. Oliffe JL, Greaves L. Designing and conducting gender, sex, and health research. Thousand Oaks, California: SAGE Publications, Inc; 2012.
30.
go back to reference Lyons AC. Masculinities, femininities, behaviour and health. Soc Personal Psychol Compass. 2009;3(4):394–412. Lyons AC. Masculinities, femininities, behaviour and health. Soc Personal Psychol Compass. 2009;3(4):394–412.
31.
go back to reference Gannon K, Glover L, Abel P. Masculinity, infertility, stigma and media reports. Soc Sci Med. 2004;59(6):1169–75.PubMed Gannon K, Glover L, Abel P. Masculinity, infertility, stigma and media reports. Soc Sci Med. 2004;59(6):1169–75.PubMed
32.
go back to reference Burton M. Negotiating masculinity: how infertility impacts hegemonic masculinity. Laurier Undergraduate J Arts. 2014;1(1):49–57. Burton M. Negotiating masculinity: how infertility impacts hegemonic masculinity. Laurier Undergraduate J Arts. 2014;1(1):49–57.
33.
go back to reference 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.PubMedPubMedCentral 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.PubMedPubMedCentral
34.
go back to reference 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.PubMed 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.PubMed
36.
go back to reference 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.PubMed 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.PubMed
37.
go back to reference 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. 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.
38.
go back to reference 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 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
39.
go back to reference Zebrack BJ, Foley S, Wittmann D, Leonard M. Sexual functioning in young adult survivors of childhood cancer. Psycho-Oncol. 2010;19(8):814–22. Zebrack BJ, Foley S, Wittmann D, Leonard M. Sexual functioning in young adult survivors of childhood cancer. Psycho-Oncol. 2010;19(8):814–22.
40.
go back to reference 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. 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.
42.
43.
go back to reference 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 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
44.
go back to reference 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 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
45.
go back to reference 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.PubMedPubMedCentral 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.PubMedPubMedCentral
46.
go back to reference 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. 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.
47.
go back to reference 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. 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.
48.
go back to reference Miers M. Developing an understanding of gender sensitive care: exploring concepts and knowledge. J Adv Nurs. 2002;40(1):69–77.PubMed Miers M. Developing an understanding of gender sensitive care: exploring concepts and knowledge. J Adv Nurs. 2002;40(1):69–77.PubMed
Metadata
Title
Facing the unknown: uncertain fertility in young adult survivors of childhood cancer
Authors
Kelly Newton
A. Fuchsia Howard
Sally Thorne
Mary T. Kelly
Karen Goddard
Publication date
01-02-2021
Publisher
Springer US
Published in
Journal of Cancer Survivorship / Issue 1/2021
Print ISSN: 1932-2259
Electronic ISSN: 1932-2267
DOI
https://doi.org/10.1007/s11764-020-00910-x

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