How Do Cancer Patients Learn About Fertility Preservation? Five Trajectories of Experience



Several organizations—including the American Society of Clinical Oncology (ASCO) and the American Society for Reproductive Medicine (ASRM)—have developed guidelines for physicians and cancer care centers so they may more effectively educate patients regarding cancer-related fertility impairment as well as available treatment options. Despite this, studies of both cancer patients and oncologists reveal an information gap where many patients are not being informed of potential impairment or what can be done. Moreover, there is a lack of understanding of how these discussions between patients and oncologists unfold, what information is discussed, and what factors shape these conversations. Our aim in this chapter is to describe our efforts to gain a nuanced understanding of how women of reproductive age with cancer learn about the potential threats to their fertility and available fertility preservation options. Drawing on interviews with women diagnosed with breast cancer prior to 40 years of age, we identify five trajectories of experience among the respondents in our sample. These trajectories differentiate across respondents by whether or not the topic was discussed with their oncologist, who initiated the topic (patient or oncologist), and whether or not fertility preservation treatment options were discussed. We also examine barriers/facilitators to the exchange of this information, including patient knowledge and empowerment and an oncologist’s network with fertility specialists. We suggest future research directions and considerations for best-practice guidelines, including greater examination of the networks between oncologists and fertility specialists, determinants of patient empowerment, and potential sources of inequality in the exchange of fertility-related information.


Fertility Preservation Fertility Specialist Patient Empowerment Fertility Issue Fertility Impairment 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.



This work was supported by the Oncofertility Consortium NIH 5UL1DE019587 and RL1HD058296.


  1. 1.
    Snyder KA, Pearse W. Discussing fertility preservation options with patients with cancer. JAMA. 2011;306:202–3.PubMedCrossRefGoogle Scholar
  2. 2.
    Jeruss JS, Woodruff TK. Preservation of fertility in patients with cancer. N Engl J Med. 2009;360:902–11.PubMedCrossRefGoogle Scholar
  3. 3.
    Lee SJ, Schover LR, Partridge AH, Patrizio P, Wallace WH, Hagerty K, Beck LN, Brennan LV, Oktay K. American society of clinical oncology recommendations on fertility preservation in cancer patients. J Clin Oncol. 2006;24:2917–31.PubMedCrossRefGoogle Scholar
  4. 4.
    Ethics Committee of the American Society for Reproductive Medicine. Fertility preservation and reproduction in cancer patients. Fertil Steril. 2005;83:1622–8.CrossRefGoogle Scholar
  5. 5.
    Duffy CM, Allen SM, Clark MA. Discussions regarding reproductive health for young women with breast cancer undergoing chemotherapy. J Clin Oncol. 2005;23:766–73.PubMedCrossRefGoogle Scholar
  6. 6.
    Partridge AH, Gelber S, Peppercorn J, Sampson E, Knudsen K, Laufer M, Rosenberg R, Przypyszny M, Rein A, Winer EP. Web-based survey of fertility issues in young women with breast cancer. J Clin Oncol. 2004;22:4174–83.PubMedCrossRefGoogle Scholar
  7. 7.
    Thewes B, Meiser B, Taylor A, Phillips KA, Pendlebury S, Capp A, Dalley D, Goldstein D, Baber R, Friedlander ML. Fertility- and menopause-related information needs of younger women with a diagnosis of early breast cancer. J Clin Oncol. 2005;23:5155–65.PubMedCrossRefGoogle Scholar
  8. 8.
    Schover LR, Brey K, Lichtin A, Lipshultz LI, Jeha S. Knowledge and experience regarding cancer, infertility, and sperm banking in younger male survivors. J Clin Oncol. 2002;20:1880–9.PubMedCrossRefGoogle Scholar
  9. 9.
    Quinn GP, Vadaparampil ST, King L, Miree CA, Wilson C, Raj O, Watson J, Lopez A, Albrecht TL. Impact of physicians’ personal discomfort and patient prognosis on discussion of fertility preservation with young cancer patients. Patient Educ Couns. 2009;77:338–43.PubMedCrossRefGoogle Scholar
  10. 10.
    Bridges JFP, Loukanova S, Carrera P. Patient empowerment in health care. In: Heggenhougen K, Quah S, editors. International encyclopedia of public health, vol. 5. San Diego, CA: Academic; 2008. p. 17–28.CrossRefGoogle Scholar
  11. 11.
    Linhorst DM, Hamilton G, Young E, Eckert A. Opportunities and barriers to empowering people with severe mental illness through participation in treatment planning. Soc Work. 2002;47:425–34.PubMedCrossRefGoogle Scholar
  12. 12.
    Rieker PP, Fitzgerald EM, Kalish LA. Adaptive behavioral responses to potential infertility among survivors of testis cancer. J Clin Oncol. 1990;8:347–55.PubMedGoogle Scholar
  13. 13.
    Quinn GP, Vadaparampil ST, Gwede CK, Miree C, King LM, Clayton HB, Wilson C, Munster P. Discussion of fertility preservation with newly diagnosed patients: oncologists’ views. J Cancer Surviv. 2007;1:146–55.PubMedCrossRefGoogle Scholar
  14. 14.
    Quinn GP, Vadaparampil ST, Lee JH, Jacobsen PB, Bepler G, Lancaster J, Keefe DL, Albrecht TL. Physician referral for fertility preservation in oncology patients: a national study of practice behaviors. J Clin Oncol. 2009;27:5952–7.PubMedCrossRefGoogle Scholar
  15. 15.
    Deadman JM, Leinster SJ, Owens RG, Dewey ME, Slade PD. Taking responsibility for cancer treatment. Soc Sci Med. 2001;53:669–77.PubMedCrossRefGoogle Scholar
  16. 16.
    Lantz PM, Janz NK, Fagerlin A, Schwartz K, Liu L, Lakhani I, Salem B, Katz SJ. Satisfaction with surgery outcomes and the decision process in a population-based sample of women with breast cancer. Health Serv Res. 2005;40:745–67.PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media New York 2014

Authors and Affiliations

  1. 1.Department of SociologyNorthwestern UniversityEvanstonUSA
  2. 2.Chicago Medical SchoolRosalind Franklin UniversityChicagoUSA

Personalised recommendations