Shannon Keating had to think about fertility preservation before she began treatment for Hodgkin lymphoma.

Family planning is not the first thing a young, newly diagnosed cancer patient might think about. But for adolescents and young adults facing cancer treatment that could leave them infertile, preserving the ability to have babies should be part of the conversation at the doctor’s office.

A new study published today in Cancer and led by Dr. Margarett Shnorhavorian, a pediatric urologist and researcher at the Seattle Children’s Research Institute Center for Clinical and Translational Research, found a need for increased awareness of fertility preservation for young cancer patients. The study was based on 459 adolescents and young adults who were diagnosed with cancer in 2007 or 2008. The patients were aged 15 to 39 years when diagnosed with germ cell tumor, non-Hodgkin lymphoma, Hodgkin lymphoma, acute lymphocytic leukemia, or sarcoma.

More than 70% of patients, whether male or female, reported being told that treatment may affect fertility. Yet male patients were more than twice as likely as female patients to report that they discussed fertility preservation options. Most striking, only about one-third of males reported making arrangements for fertility preservation, which was four to five times higher than the rate seen in females.

One young woman’s fertility

Shannon Keating, 18, was diagnosed with Hodgkin lymphoma when she was a sophomore in high school and was told that cancer treatment could impact her fertility. She was treated at Seattle Children’s, where the Adolescent and Young Adult Cancer Program sees cases like hers every day.

“My doctor told me having my eggs frozen is an insurance policy for my fertility,” Shannon said. “It’s possible I could conceive children on my own, but if I can’t, I have eggs set aside.”

For a teenager like Shannon, learning she had cancer, dealing with treatment and discussing the possibility of infertility was a lot to absorb.

“In addition to the cancer treatment itself, I had to take hormone shots and have surgery for egg harvesting,” she said.

Shannon’s medical team made fertility preservation part of the conversation before she began treatment. But when she attended a camp for young adults with chronic or life-threatening illnesses and asked other campers about their experience with fertility preservation, few other cancer patients could say they had these conversations with their doctors. Dr. Shnorhavorian and her collaborator, Dr. Stephen Schwartz of Fred Hutchinson Cancer Research Center, say that’s common.

“Unfortunately, large portions of patients, both male and female, did not have these discussions at all,” said Schwartz. “About 70% of males had this talk, but only about 34% of females did. We attribute that to the reality that the fertility preservation options for women are more complex to implement than for men.”

Sperm banking can be an uncomfortable topic of conversation for a teenage boy, but it’s a straightforward way to preserve sperm for adolescent males. In young women, it’s not that easy.

“There can be an urgency to begin cancer treatment and not delay, so that could be why fewer options are discussed with women,” said Shnorhavorian.

Who has the discussion?

The study also found that fertility preservation may be linked with medical factors, the socioeconomic status of the patient, and if the patient already had children. For example, individuals without insurance, those who were raising children, and, among males only, those who received treatment posing no or low fertility risk were less likely to discuss fertility preservation with clinicians.

“There were socioeconomic patterns that seemed to indicate who was more or less likely to discuss fertility preservation with their doctor,” said Schwartz. “Individuals who had fewer financial resources, held insurance that was not private, and males who did not have a college degree were less likely to have this conversation.”

Too few females had made fertility preservation arrangements for similar analyses.

Shnorhavorian points out that fertility preservation in young patients requires a team approach with the patient, family and medical team.

“There needs to be support for the patient and also the clinician who’s faced with challenges when an adolescent or young adult patient is diagnosed,” said Shnorhavorian. “It has to be a team approach.”

The amount of research that’s been done on fertility preservation for adolescents and young adults is limited. Shnorhavorian and Schwartz urge that more study and analysis are needed to characterize the issue more clearly.

“If we find problems, like populations that are not being served or institutional processes that make fertility preservation hard, how can we change that?” said Shnorhavorian. “What interventions can we use to maximize existing services or redesign how we integrate this issue into treatment?”

They also say more study is needed to understand how existing cancer treatments impact fertility in young patients, and point to a need for fertility preservation technologies for populations that have limited options, like young boys and girls.

The cost of fertility preservation can also be a factor for some patients. Shannon and her family spent $5,000 out of pocket to preserve her eggs and had help from the LIVESTRONG Foundation.

“There are a lot of resources out there and organizations that can subsidize cost,” said Shnorhavorian. “But at a health policy level, fertility preservation benefits should be covered.”

A future with a family

Shannon Keating at her senior prom. Her Seattle Children’s team made fertility preservation part of the conversation before she began treatment.

Shannon will begin her freshman year of college this fall at Washington State University. At some point in her future, she would like to start a family.

“I was forced at a young age to face the possibility of not having kids, and it made me realize that I do want them,” she said. “My hope is that more attention is placed on infertility of young adult cancer patients. A lot of people think when treatment is done you’re fine and you move on, but it’s not that simple. I’ll have to think about this and discuss it with a future mate.”

Shannon also said that clinicians need to discuss fertility preservation at a level adolescents and young adult patients can understand amid the frightening prospect of cancer treatment.

“Coming at the issue of fertility from a discouraging standpoint can be terrifying and frustrating for a young person,” she said. “Hospitals and doctors that aren’t used to young adult cancer patients need to understand that because we’re younger, we process things differently. I was dealing with a lot, and everyone at Seattle Children’s was supportive and understood what I was going through, which helped enormously.”