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—may not adequately help patients protect their fertility.

Most of these centers do not have policies or procedures that 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 potential options that exist that were not offered to them,” said lead study author Marla Clayman, PhD, MPH, 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, both in Chicago, Illinois. The study was published in the Journal of the National Comprehensive Cancer Network (2013; 11:1504-1509).

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“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.”

The study found that only four of the 33 comprehensive cancer centers surveyed had policies for consistent provision of fertility preservation information, though 20 sites had some services onsite and eight sites had referral programs. Only 13 had such experimental services as ovarian tissue cryopreservation; and only eight sites had staff time dedicated to fertility preservation.

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 reported. The study concluded that, although comprehensive cancer centers are positioned to provide exemplary oncofertility care, most of them need to better integrate both information and referral about fertility preservation into their practices.

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 is a co-editor, along with Northwestern’s Teresa Woodruff, PhD, and Kate Waimey, PhD, of the new book, Oncofertility Communication.