What young cancer patients aren't being told about their fertility

A cancer diagnosis is devastating for anyone, but for young people it comes with an added concern: the possibility that the disease or its treatment will leave them unable to have children. There are ways to help many young cancer patients preserve their fertility, but a new study finds patients often are not aware of the options.

The study, published Monday in the journal Cancer, finds young women, especially, may not receive enough information before treatments have already limited their options.

"It's a brave new world, fertility preservation," Dr. Nicole Noyes, reproductive endocrinologist and director of the fertility program at NYU Langone's Fertility Center, told CBS News. "We've got to get the word out to more oncologists."

A cascade of decisions and treatments usually follows a cancer diagnosis, often starting within days if the cancers are aggressive. Because of the accelerated timing, many young patients may not have an opportunity for detailed discussions about their fertility before chemotherapy or radiation.

The survey of 459 teen and young adult cancer patients, recruited from seven different registries across the U.S., asked what counseling and strategies they had received about the possibility of preserving the ability to have children after cancer treatment. Though 70 percent reported learning that cancer treatment could make them infertile, only 31 percent of males used fertility-preserving options -- and only 6.8 percent of females did so.

"The access and health-related reasons for not making arrangements for fertility preservation reported by participants in this study further highlight the need for decreased cost, improved insurance coverage, and partnerships between cancer healthcare providers and fertility experts," lead author Dr. Margarett Shnorhavorian of the University of Washington, Seattle Children's Hospital said in a statement.

Timing and cost

Cancer diagnoses for adolescent and young adult patients often lead to immediate treatment, which presents a big challenge for preserving fertility. Many teen patients are diagnosed in emergency rooms because they are already very sick. Sometimes that means they need treatment within 24 hours and cannot wait for fertility preserving treatments.

What young cancer patients do have on their side is their biological clock, because young men have generally robust sperm and young women have a large reserve of eggs in their ovaries. As long as the treatment does not include radiation to the pelvic or abdominal areas or the strongest forms of chemotherapy, their normal production processes may continue. Though for young women, continuing to menstruate may not guarantee their fertility has been preserved, according to the American Society of Clinical Oncology.

But there is a vast difference in the process of preserving fertility between young men and young women. Boys can provide sperm samples in an office at any time, as long as they have reached puberty and have mature sperm. But it can be difficult for families to discuss.

"It's not a timing issue and it's not even that expensive to freeze sperm: it's a couple hundred dollars," said Noyes. "It turns out that not all boys are told about that."

Young women have many more difficult choices to consider, involving more of a medical process at a time they are already sick. The procedures can also take more time, potentially delaying treatment.

Unfertilized egg freezing has become one of the most common options for preserving fertility for later, and its success rates have improved since the first baby was born from a frozen egg in 1986, according to Noyes. There is also the option to freeze a fertilized embryo if the woman already has a partner.

"For eggs, it's expensive, it's two weeks, it's shots, maybe they're too sick to do it. Sometimes people have, like with these lymphomas, a big chest tumor," said Noyes. "You have to take really good care of these patients because they're already sick."

More experimental procedures that show promise include moving the ovaries out of the way during lower level radiation or removing some of the tissue from the ovaries to transplant back into the patient later. Hormone blocking drugs like goserelin, stop the ovaries from producing mature eggs during cancer treatment so they are less exposed.

Because many of the latest advances in fertility preservation for young women are still considered experimental, they are often not covered by insurance. And Medicaid does not cover any fertility treatments at all.

"It is expensive, but I have to say more and more insurance are now covering it," she said. "It's covered if there's a medical indication. If I deem them medically needing egg freezing, for something like cancer, they'll cover. So that's a big change."

Coordination between specialties

Noyes said the two disciplines involved in such treatments -- oncology and fertility -- may need better coordination. Oncologists may not have updated information on what's shown to be effective as fertility treatments advance.

"They're not following my literature; I'm not following what new chemos are there to treat things," said Noyes. "Until somebody says, 'Hey, you know they've made a lot of strides in this egg freezing,' and they start sending patients, then they see. "

Study author Shnorhavorian noted that the two specialties should "develop strategies that increase awareness of fertility preservation options and decrease delays in cancer therapy as fertility preservation for adolescent and young adult cancer patients improves."

Doctors need to be more aware, because young patients aren't likely to know it's an issue they should ask about.

"Teens are kind of in their own bubble," said Noyes. "It's not like they're going to be Googling eggs. So it's just not on their radar. "