Young Breast Cancer Survivors: Their Perspectives on Treatment Decisions and Fertility Concerns

Gorman, Jessica R. PhD, MPH; Usita, Paula M. PhD; Madlensky, Lisa PhD; Pierce, John P. PhD

Disclosures

Cancer Nurs. 2011;34(1):32-40. 

In This Article

Abstract and Introduction

Abstract

Background: Younger women diagnosed with breast cancer are more likely to have survival concerns related to fertility, which may influence their treatment decisions.
Objective: This qualitative study explores how young women make cancer treatment decisions and the role of fertility concerns in that process.
Methods: We used purposeful sampling to identify a diverse group of 20 young breast cancer survivors, half of whom had a child after breast cancer. We conducted open-ended telephone interviews and used cross-case, inductive analysis to identify themes.
Results: The main themes were (1) "I was young, I wanted to do everything possible to move forward with my life and not to have the cancer come back"; (2) "Fertility concerns are different for every woman"; (3) "My oncologist was great… a huge part of my survivorship"; and (4) "They didn't tell me about my options, and I didn't think about fertility until it was too late."
Conclusions: Although fertility was important to many participants, treatment decisions were mainly motivated by survival concerns. Fertility concerns depended on life circumstances, and the timing in relation to diagnosis varied. There is a need for improved information regarding the impact of treatment on fertility and fertility preservation options, even if concerns are not expressed at diagnosis.
Implications for Practice: It is critical that cancer care providers provide timely information regarding fertility. Oncology nurses are particularly well positioned to serve this role by communicating with patients about their fertility concerns and reproductive planning prior to treatment and throughout the course of survivorship.

Introduction

Breast cancer treatment can increase the risk of early menopause and result in reproductive difficulties.[1–4] This is a major concern for many young breast cancer patients and survivors who have not finished growing their families. The risk of chemotherapy-induced amenorrhea is lower among young breast cancer patients and depends on chemotherapeutic agent and dose.[4] However, even women who resume menstruation may face later difficulties with fertility due to ovarian damage and menopause at an earlier age.[3,4] Infertility alone is an emotionally challenging problem and may be even more challenging for cancer survivors.[5] Cancer diagnosis may result in delayed childbearing for many survivors who are typically advised to wait 2 to 3 years after treatment ends before conceiving. Those who undertake endocrine therapy, such as tamoxifen, face additional delays. This may rule out pregnancy for many survivors, particularly those who had already postponed childbearing until later in life.

Research indicates that the informational needs of young women regarding fertility and menopause are not being met.[6] There may also be discordance between younger women's concerns about fertility issues and how this issue is addressed by their doctors.[6,7] Some women feel that their concerns are not taken seriously by their health care providers.[8] Younger survivors also appear to have greater psychosocial needs as compared with older survivors, particularly with respect to dealing with the physical impact of treatment and associated gynecologic and reproductive consequences.[9] The need for support related to fertility and early menopause has been identified as very important to younger women.[8–11] Infertility and concerns about reproductive issues can negatively impact on survivors' well-being.[12,13]

Concerns about fertility may play a role in cancer treatment decisions made by young women.[14] In a recent study, 12% of long-term breast cancer survivors diagnosed at 40 years or younger reported that fertility was a consideration in their treatment decisions.[15] Results from a Web-based survey of young survivors found that fertility concerns impacted treatment decisions about 30% of the time, although selection bias may have resulted in a greater number who were concerned about fertility.[14] Learning more about how young women make treatment decisions is an important step toward meeting their informational and support needs.

We conducted this exploratory study to gather information about how young women make cancer treatment decisions and to investigate the role of fertility in their decision-making process. Although researchers and clinicians have begun to address the importance of fertility for young women diagnosed with cancer, there are currently no qualitative studies detailing these important issues from the perspective of young survivors. This approach provides in-depth and contextual information that cannot be obtained quantitatively[16] and allowed us to identify specific areas of unmet need.

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