CHICAGO --- Infertility is consistently listed as one of the most distressing long-term side effects of cancer treatment for adolescents and young adults. Yet the leading National Cancer Institute-designated comprehensive cancer centers -- which should be leaders in fertility preservation -- aren’t doing an adequate job of helping patients protect their fertility, reports a new Northwestern Medicine® study.

Most of these centers around the country do not have policies or procedures in place to consistently identify which patients may be at risk for fertility loss, inform patients of this risk in a timely manner or refer them to fertility specialists, the study found. At the time of the study, there were 39 comprehensive cancer centers that treated adults.

“It can be shocking for patients to find out their fertility was affected when there were potentially options that exist that were not offered to them,” said lead study author Marla Clayman, an assistant professor of medicine at Northwestern University Feinberg School of Medicine and a member of the Robert H. Lurie Comprehensive Cancer Center of Northwestern University.

The paper was published this month in the Journal of the National Comprehensive Cancer Network.

“These are the centers that are at the vanguard of research and have the most people and financial resources,” Clayman added. “This should be part of the exemplary cancer care patients get in these centers.”

A patient navigator for fertility preservation sees cancer patients at the Lurie Cancer Center, Clayman noted. Northwestern is the site of the Oncofertility Consortium, a national, interdisciplinary initiative designed to explore the reproductive future of cancer survivors.

Survival rates for young cancer patients have steadily increased over the past four decades due to more effective treatments. More women and men look forward to life after cancer and having children is a key part of their hope for the future.

“When you think about having children after cancer, that’s a very strong way to think about surviving and thriving after cancer,” Clayman said. “It’s not just that you want to live, it’s that you want to live a life as close as possible that you could have without cancer.”

Fertility navigators or a designated fertility educator are key to bridge the gap between oncology and fertility. But less than one-third of the centers had someone in this role, the study reports.

Fertility navigators or educators reduce the need for oncologists to have in-depth discussions about potential fertility loss and fertility preservation, a rapidly changing field in which they are not experts.

Clayman also pointed out that if these institutions with the most resources have not made fertility preservation a priority, then providing these services to the patients who are seen in community and private clinics cannot be expected to occur.

Clayman is a co-editor, along with Northwestern’s Teresa Woodruff and Kate Waimey of the new book Oncofertility Communication. Woodruff, chief of fertility preservation at Feinberg, founded and leads the Oncofertility Consortium.

The study was funded by grant 5-UL1DE019587-05 from the National Institute on Child Health and Human Development at the National Institute of Health.