Younger Female Survivors Need More Information and Support for Fertility Preservation

Catherine Benedict

Catherine Benedict

Resources and information about possible loss of fertility after cancer treatment and preservation measures to prevent infertility are sorely lacking for young women, according to a new study.

The research, published online May 23 in the journal Cancer, found a lack of counseling, support, and information available to young women diagnosed with cancer regarding options to preserve their fertility, despite the fact that women who receive pretreatment fertility counseling experience less regret and report a better quality of life after treatment.

These results are drawn from the responses of a group of 346 women aged 18 to 35 years to an anonymous, online survey conducted between February and March 2015. They were recruited from Memorial Sloan Kettering Cancer Center and 17 young adult cancer survivor advocacy groups reached through social media and email lists. The average age of the women was 29.9 years, and the most common forms of cancer among the participants were lymphoma, breast cancer, gynecologic cancer, and leukemia.

Survey questions addressed such topics as the participants’ unmet fertility preservation (FP) information needs and asked respondents to rate factors they consider important in the FP decision making process, for example, emotional distress and cost.

FP can be done before or after treatment for cancer. Types of FP include freezing embryos, unfertilized eggs or ovarian tissues; shielding certain organs from radiation, and surgically moving the ovaries away from the area receiving radiation treatment.

Within the total respondent cohort, the researchers focused on a subgroup of women (n = 179) who wanted children in the future or weren’t sure, had not been advised they were infertile, had not had their ovaries repositioned away from the area receiving radiation, and had not tried to freeze their eggs or embryos.

Although most of these respondents (92%) indicated they want to have children in the future, only 20% who could not become pregnant had preserved their fertility.

Fifty-eight percent of women in this subgroup responded that they did not have sufficient information about their risk of infertility, 60% did not feel adequately informed of their risk of early menopause, 51% had unmet needs with regard to information on preserving their fertility, and 43% felt uninformed with regard to other family building options.

A majority of respondents in this subgroup (64%) expressed concern about their ability to have children or more children, 41% found thinking about a pregnancy stressful, and nearly 60% feared passing on a genetic risk for cancer to their offspring. And, across all of the information topics covered in the survey, women in this subgroup who had unmet needs also reported higher levels of decisional conflict, a notable finding given that 70% believed they had not received sufficient advice related to FP, and 35% did not feel they had the support they needed to make a decision.

Another issue that surfaced in the research involves interpersonal relationships, with approximately 53% of respondents expressing worry about disappointing their future partner due to their inability to have children.

“The potential loss of fertility has been described in the literature as being almost as painful, if not more so, than the cancer diagnosis itself,” said study author Catherine Benedict, PhD, assistant professor, Department of Medicine, Hofstra Northwell School of Medicine, in a statement. “Failure to provide information and address concerns with respect to fertility-related decisions may have lasting consequences for young women who hope to move on from their cancer experience to achieve important life goals such as having children.”

Study authors noted that these results point to a need for both a comprehensive and personalized approach to meet the fertility preservation needs of young adult female cancer survivors. In addition to treatments to preserve fertility, patients should also be informed of alternative routes to motherhood, such as adoption or surrogacy. Although women should receive fertility counseling before beginning treatment for cancer, the services should continue after treatment is completed, when many women feel they can focus on their fertility. Adjustments should be made to the resources and help available, as the needs of the women have changed. Counseling and support services dedicated to helping women with dating and communicating information regarding their fertility to a partner should also be provided.

Study authors concluded that their findings point to a “critical need to develop resources both for survivors and for the use of clinicians in supporting patients in making informed, values-based decisions about their reproductive options.”

Benedict C, Thom B, Friedman DN, et al. Young adult female survivors’ unmet information needs and reproductive concerns contribute to decisional conflict regarding posttreatment fertility preservation [published online before print May 23, 2016]. Cancer.