Skip to main content

The Birds and the Bees and the Bank: Talking with Families About Future Fertility Amidst a Cancer Diagnosis

  • Chapter
  • First Online:
Textbook of Oncofertility Research and Practice

Abstract

There are many reasons why discussions about fertility preservation may be difficult after a cancer diagnosis, though it is critical that these discussions occur prior to the start of cancer treatment in order to give patients the greatest chance of successfully having children in the future. There are many educational materials available and several new online tools that can connect patients with the information they need to make a decision about their fertility; however, face-to-face communication with health-care providers is a more effective way to convey complex information regarding cancer treatment and fertility. This chapter describes recent research into the beliefs and attitudes of adolescents and young adults regarding their fertility and how clinicians can more effectively conduct discussions about fertility with cancer patients within the difficult context of a recent cancer diagnosis.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 129.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Hardcover Book
USD 169.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  1. Brock DW, Wartman SA. When competent patients make irrational choices. N Engl J Med. 1990;322:1595–9.

    Article  CAS  PubMed  Google Scholar 

  2. Levi RB, et al. Diagnosis, disclosure, and informed consent: learning from parents of children with cancer. J Pediatr Hematol Oncol. 2000;22:3–12.

    Article  CAS  PubMed  Google Scholar 

  3. Byrne J, et al. Effects of treatment on fertility in long-term survivors of childhood or adolescent cancer. N Engl J Med. 1987;317:1315–21.

    Article  CAS  PubMed  Google Scholar 

  4. Oktay K, Harvey BE, Partridge AH, Quinn GP, Reinecke J, Taylor HS, Hamish Wallace W, Wang ET, Loren AW. Fertility preservation in patients with cancer: ASCO clinical practice guideline update. J Clin Oncol. 2018;36(19):1994–2001. https://doi.org/10.1200/JCO.2018.78.1914.

    Article  PubMed  Google Scholar 

  5. Ethics Committee of the American Society for Reproductive Medicine. Fertility preservation and reproduction in patients facing gonadotoxic therapies: a committee opinion. Fertil Steril. 2013;100(5):1224–31.

    Article  Google Scholar 

  6. Fallat ME, Hutter J, American Academy of Pediatrics Committee on Bioethics, American Academy of Pediatrics Section on Hematology/Oncology, American Academy of Pediatrics Section on Surgery. Preservation of fertility in pediatric and adolescent patients with cancer. Pediatrics. 2008;121:e1461–9.

    Article  PubMed  Google Scholar 

  7. Edge B, Holmes D, Makin G. Sperm banking in adolescent cancer patients. Arch Dis Child. 2006;91:149–52.

    Article  CAS  PubMed  Google Scholar 

  8. Soliman H, Agresta SV. Current issues in adolescent and young adult cancer survivorship. Cancer Control. 2008;15:55–62.

    Article  PubMed  Google Scholar 

  9. Byrne J, et al. Fertility of long-term male survivors of acute lymphoblastic leukemia diagnosed during childhood. Pediatr Blood Cancer. 2004;42:364–72.

    Article  PubMed  Google Scholar 

  10. Zebrack BJ, et al. Fertility issues for young adult survivors of childhood cancer. Psychooncology. 2004;13:689–99.

    Article  PubMed  Google Scholar 

  11. Chapple A, et al. Fertility issues: the perceptions and experiences of young men recently diagnosed and treated for cancer. J Adolesc Health. 2007;40:69–75.

    Article  PubMed  Google Scholar 

  12. Oosterhuis BE, et al. Concerns about infertility risks among pediatric oncology patients and their parents. Pediatr Blood Cancer. 2008;50:85–9.

    Article  PubMed  Google Scholar 

  13. de Wildt SN, Taguchi N, Koren G. Unintended pregnancy during radiotherapy for cancer. Nat Clin Pract Oncol. 2009;6:175–8.

    Article  PubMed  Google Scholar 

  14. Antypas C, et al. Fetal dose evaluation during breast cancer radiotherapy. Int J Radiat Oncol Biol Phys. 1998;40:995–9.

    Article  CAS  PubMed  Google Scholar 

  15. Fertile Hope. Fertility resource guide. Austin: Fertile Hope; 2011. http://www.fertilehope.org/tool-bar/referral-guide.cfm. Accessed 20 July 2011.

    Google Scholar 

  16. Letourneau JM, et al. A changing perspective: improving access to fertility preservation. Nat Rev Clin Oncol. 2011;8:56–60.

    Article  PubMed  Google Scholar 

  17. Quinn GP, et al. Developing a referral system for fertility preservation among patients with newly diagnosed cancer. J Natl Compr Cancer Netw. 2011;9:1219–25.

    Article  Google Scholar 

  18. Peavey M, Arian S, Gibbons W, Lu K, Gershenson D, Woodard T. On-site fertility preservation services for adolescents and young adults in a comprehensive cancer center. J Adolesc Young Adult Oncol. 2017;6(2):229–34. https://doi.org/10.1089/jayao.2016.0057.. Epub 2016 Nov 15. PMID: 27845854 [PubMed – indexed for MEDLINE] Free PMC Article.

    Article  PubMed  PubMed Central  Google Scholar 

  19. Quinn GP, et al. Oncologists’ use of patient educational materials about cancer and fertility preservation. Psychooncology. 2011; https://doi.org/10.1002/pon.2022.

  20. Schover LR, et al. Knowledge and experience regarding cancer, infertility, and sperm banking in younger male survivors. J Clin Oncol. 2002;20:1880–9.

    Article  PubMed  Google Scholar 

  21. Quinn GP, et al. Discussion of fertility preservation with newly diagnosed patients: oncologists’ views. J Cancer Surviv. 2007;1:146–55.

    Article  PubMed  Google Scholar 

  22. Willock J, Grogan S. Involving families in the production of patient information literature. Prof Nurse. 1998;13:351–4.

    CAS  PubMed  Google Scholar 

  23. Cushen N, South J, Kruppa S. Patients as teachers: the patient’s role in improving cancer services. Prof Nurse. 2004;19:395–9.

    PubMed  Google Scholar 

  24. Wizowski L, Harper T, Hutchings T. Writing health information for patients and families: a guide to creating patient education materials that are easy to read, understand and use. Hamilton: Hamilton Health Sciences; 2005.

    Google Scholar 

  25. Nagel K, et al. Using plain language skills to create an educational brochure about sperm banking for adolescent and young adult males with cancer. J Pediatr Oncol Nurs. 2008;25:220–6.

    Article  PubMed  Google Scholar 

  26. Crawshaw M, et al. Male and female experiences of having fertility matters raised alongside a cancer diagnosis during the teenage and young adult years. Eur J Cancer Care. 2009;18:381–90.

    Article  CAS  Google Scholar 

  27. Crawshaw M, Sloper P. A qualitative study of the experiences of teenagers and young adults when faced with possible or actual fertility impairment following cancer treatment, Executive summary. York: University of York; 2006.

    Google Scholar 

  28. Zarnegar S, Gosiengfiao Y, Rademaker A, Casey R, Albritton KH. Recall of fertility discussion by adolescent female cancer patients: a survey-based pilot study. J Adolesc Young Adult Oncol. 2018;7(2):249–53. https://doi.org/10.1089/jayao.2017.0079.. Epub 2017 Oct 23. PMID: 29058500 [PubMed – in process].

    Article  PubMed  Google Scholar 

  29. Benedict C, Thom B, Friedman DN, Pottenger E, Raghunathan N, Kelvin JF. Fertility information needs and concerns post-treatment contribute to lowered quality of life among young adult female cancer survivors. Support Care Cancer. 2018;26(7):2209–15. https://doi.org/10.1007/s00520-017-4006-z.. Epub 2018 Feb 1. PMID: 29387996 [PubMed – in process].

    Article  PubMed  PubMed Central  Google Scholar 

  30. Melo C, Fonseca A, Moura-Ramos M, Almeida-Santos T, Canavarro MC. Female cancer patients’ perceptions of the fertility preservation decision-making process: an exploratory prospective study. J Psychosoc Oncol. 2018;36(3):364–81. https://doi.org/10.1080/07347332.2018.1436629.. Epub 2018 Mar 20. PMID: 29558339 [PubMed – in process].

    Article  PubMed  Google Scholar 

  31. Bleyer A, et al. Trailblazers in adolescent and young adult oncology. J Adolesc Young Adult Oncol. 2011;1:13–8.

    Article  PubMed  Google Scholar 

  32. Logan S, Perz J, Ussher JM, Peate M, Anazodo A. A systematic review of patient oncofertility support needs in reproductive cancer patients aged 14 to 45 years of age. Psycho‐Oncology. 2018;27:401–9. https://doi.org/10.1002/pon.4502.

    Article  CAS  PubMed  Google Scholar 

  33. Varni JW, Burwinkle TM, Lane M. Health-related quality of life measurement in pediatric clinical practice: an appraisal and precept for future research and application. Health Qual Life Outcomes. 2005;3:1–9.

    Article  Google Scholar 

  34. Palmer SN, et al. The PedsQL™ brain tumor module: initial reliability and validity. Pediatr Blood Cancer. 2007;49:287–93.

    Article  PubMed  Google Scholar 

  35. Levi RB, Drotar D. Health-related quality of life in childhood cancer: discrepancy in parent–child reports. Int J Cancer. 1999;83:58–64.

    Article  Google Scholar 

  36. Klosky JL, Simmons JL, Russell KM, Foster RH, Sabbatini GM, Canavera KE, et al. Fertility as a priority among at-risk adolescent males newly diagnosed with cancer and their parents. Support Care Cancer. 2015;23(2):333–41.

    Article  PubMed  Google Scholar 

  37. Lewandowski AS, Toliver-Sokol M, Palermo TM. Evidence-based review of subjective pediatric sleep measures. J Pediatr Psychol. 2011;36:780–93.

    Article  PubMed  PubMed Central  Google Scholar 

  38. Vitale MG, et al. Assessment of quality of life in adolescent patients with orthopaedic problems: are adult measures appropriate? J Pediatr Orthop. 2001;21:622–8.

    CAS  PubMed  Google Scholar 

  39. Strong P. The ceremonial order of the clinic: parents, doctors, and medical bureaucracies. London: Routledge & Kegan Paul Books; 1979.

    Google Scholar 

  40. Perrin JM, MacLean WE, Perrin EC. Parental perceptions of health status and psychologic adjustment of children with asthma. Pediatrics. 1989;83:26–30.

    CAS  PubMed  Google Scholar 

  41. Wenzel L, et al. Defining and measuring reproductive concerns of female cancer survivors. J Natl Cancer Inst Monogr. 2005;2005:94–8.

    Article  Google Scholar 

  42. Trevena LJ, et al. A systematic review on communicating with patients about evidence. J Eval Clin Pract. 2006;12:13–23.

    Article  PubMed  Google Scholar 

  43. Wiklander M, Strandquist J, Obol CM, Eriksson LE, Winterling J, Rodriguez-Wallberg KA, Sjögren Fugl-Meyer K, Ahlgren J, Ljungman P, Lampic C, Wettergren L. Feasibility of a self-help web-based intervention targeting young cancer patients with sexual problems and fertility distress. Support Care Cancer. 2017;25(12):3675–82. https://doi.org/10.1007/s00520-017-3793-6.. Epub 2017 July 18.

    Article  PubMed  PubMed Central  Google Scholar 

  44. Woodard TL, Hoffman AS, Crocker LC, Holman DA, Hoffman DB, Ma J, Bassett RL Jr, Leal VB, Volk RJ. Patient-centred decision counselling for women at risk of cancer-related infertility: a protocol for a comparative effectiveness cluster randomised trial. BMJ Open. 2018;8(2):e019994. https://doi.org/10.1136/bmjopen-2017-019994.

    Article  PubMed  PubMed Central  Google Scholar 

  45. Manley K. Organisational culture and consultant nurse outcomes: part 2. Nurse outcomes. Nurs Stand. 2000;14:34–9.

    PubMed  Google Scholar 

  46. Manley K. A conceptual framework for advanced practice: an action research project operationalizing an advanced practitioner/consultant nurse role. J Clin Nurs. 1997;6:179–90.

    Article  CAS  PubMed  Google Scholar 

  47. Manley K, McCormack B. Practice development: purpose, methodology, facilitation and evaluation. Nurs Crit Care. 2003;8:22–9.

    Article  PubMed  Google Scholar 

  48. Warfield C. Nursing development unit: developing a new philosophy in the NDU. Nurs Stand. 1990;4:27–30.

    Article  CAS  PubMed  Google Scholar 

  49. Guimond P, et al. Validation of a tool to assess health practitioners’ decision support and communication skills. Patient Educ Couns. 2003;50:235–45.

    Article  PubMed  Google Scholar 

  50. Koizumi T, Nara K, Hashimoto T, Takamizawa S, Sugimoto K, Suzuki N, Morimoto Y. Influence of negative emotional expressions on the outcomes of shared decision making during oncofertility consultations in Japan. J Adolesc Young Adult Oncol. 2018;7(4):504–8. https://doi.org/10.1089/jayao.2017.0108.. Epub 2018 July 23.

    Article  PubMed  PubMed Central  Google Scholar 

Download references

Acknowledgments

This work was supported by the Oncofertility Consortium NIH/NICHD 5UL1DE019587.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Gwendolyn P. Quinn .

Editor information

Editors and Affiliations

Review Questions and Answers

Review Questions and Answers

  1. Q1.

    There are no tools available to help AYA make fertility decisions. True or False?

  2. A1.

    False

  1. Q2.

    Most oncology providers are well trained in AYA reproductive health. True or False?

  2. A2.

    False

  1. Q3.

    The reproductive concerns scale was designed for male teens. True or False?

  2. A3.

    False

  1. Q4.

    AYA patients often “shut down” after receiving a cancer diagnosis. True or False?

  2. A4.

    True

Rights and permissions

Reprints and permissions

Copyright information

© 2019 Springer Nature Switzerland AG

About this chapter

Check for updates. Verify currency and authenticity via CrossMark

Cite this chapter

Quinn, G.P., Knapp, C., Murphy, D. (2019). The Birds and the Bees and the Bank: Talking with Families About Future Fertility Amidst a Cancer Diagnosis. In: Woodruff, T., Shah, D., Vitek, W. (eds) Textbook of Oncofertility Research and Practice. Springer, Cham. https://doi.org/10.1007/978-3-030-02868-8_25

Download citation

  • DOI: https://doi.org/10.1007/978-3-030-02868-8_25

  • Published:

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-030-02867-1

  • Online ISBN: 978-3-030-02868-8

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics