A new study shows that, despite female cancer survivors being concerned about their future fertility, many do no receive adequate information. Research published this week in Cancer calls for an increase in support for women making decisions about their reproductive options.

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Are cancer patients receiving the right information regarding their future fertility?

Around 1 in 47 young, female adults will be diagnosed with invasive cancer.

Cancer treatment, even when successful, is incredibly toxic, not least for the reproductive system.

The ovaries, fallopian tubes, uterus, and cervix all have the potential to become damaged.

Survivors face an increased risk of early menopause, giving them a shorter reproductive window.

Despite this, fertility preservation – egg or embryo freezing – before treatment is only chosen by the minority of women.

The reasons for this lack of take-up are varied and include being unaware of fertility options, emotional distress, time pressures, and financial costs. Also, before egg freezing was available, some women were uncomfortable with the idea of using a sperm donor for embryo freezing.

For adult survivors, post-treatment fertility preservation (rather than pre-treatment) could be a useful option, but it is rarely used. Young survivors often do not receive adequate information about the relevant options. Clinicians also report that they themselves do not feel they always have the right information to share and are often not fully aware of the patient’s concerns about future fertility.

Previous research in this area has primarily focused on decisions regarding fertility preservation prior to treatment. The present study set out to uncover the reasons why women were unlikely to receive the fertility preservation after treatment when it is still a viable option. The researchers also wanted to investigate the thought processes these young women go through and the factors that impact the decision-making process.

Researchers, led by Catherine Benedict, Ph.D., of Northwell Health in New York, and Joanne Kelvin and Bridgette Thom, of Memorial Sloan Kettering – also in New York – set out to understand whether an information gap exists and, if it does, how large it is.

An anonymous survey was sent out to 346 participants, aged 18-35 (average age of 30). The participants had all completed treatment at least 1 year earlier (average of 5 years earlier).

Of this group, the team focused on 179 women who had uncertain fertility status and who had not undergone fertility preservation before or after treatment. This subsection of the population either planned to have children in the future or were “unsure.”

The questionnaire asked whether participants felt that they had been given enough information about a number of relevant topics, including the risks of infertility and early menopause, options to assess their fertility status, preserving fertility, and options for alternative family-building.

Questions were also asked about reproductive concerns they might have, for instance, the health of any future children. Lastly, the group was asked questions about any difficulties they had in the decision-making process, such as lacking support and feeling uncertain about the options.

The majority of respondents believed that they had not received enough information about the risk of infertility (58 percent), risk of early menopause (60 percent), options to assess their fertility (62 percent), options to preserve their fertility (51 percent), and options for alternative family building (43 percent).

The women’s greatest concerns were related to potential fertility problems and the health of a future child, for instance, passing on a susceptibility to cancer (64 percent).

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.

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.

For women at risk for early menopause, delaying fertility-related decisions may cause them to miss their narrowed window of opportunity to preserve their fertility if desired.”

Catherine Benedict, Ph.D.

The authors end their report with a call for an increase in information sharing. They believe that efforts to develop detailed information resources could make genuine differences to the lives of young, female cancer survivors.

Learn more about fertility treatment, breast density, and breast cancer.