Medical Professional Publications

A Question of Fertility Among Cancer Survivors

(From the December 2017 issue of Research Now)

Nationwide Children’s Hospital Researchers Suggest New Guidelines for Counseling and Testing are Needed

More than three-quarters of adults who survive childhood cancer want to have children of their own, but few know if they can.

And, learning that they’re infertile, years after they’ve been diagnosed and treated, would cause significant distress, the survivors report.

The study, published in the journal Human Reproduction, is one in a series by Nationwide Children’s Hospital researchers, to learn about childhood cancer survivors’ health and needs during adulthood.

Due to better diagnosis and treatment, “the survivor population is growing exponentially,” says Cynthia Gerhardt, PhD, director of the Center for Biobehavioral Health in The Research Institute at Nationwide Children’s and senior author of the study. “Concerns about fertility arise as survivors reach their prime age for reproduction.”

The risk for infertility ranges from 11 to 66 percent for most childhood cancers and treatments, but reaches 90 percent among those who receive a bone marrow transplant.

“If survivors remain unaware of the risk and assume they are fertile, it could cause distress later in life” says Vicky Lehmann, PhD , a psychologist, postdoctoral fellow at St. Jude's Children's Research Hospital and first author of this study.

For the study, researchers surveyed 105 adults age 20 to 40, who had been treated for cancer at Nationwide Children's. The survivors, diagnosed between ages 5 and 18, were at least five years past their diagnosis, and did not have children. Nearly 78 percent didn’t know if they could be a biological parent.

In a review of the survivors’ medical records, the researchers found that 40 received some assessment of their gonadal function, but 33 reported they still didn’t know their fertility status. Whether these hormonal test results weren’t discussed with survivors or if they didn’t remember is unclear. While hormone levels are not a definitive indicator of fertility, they could determine whether more extensive fertility testing is indicated, the researchers say.

More than 80 percent of survivors said they wanted to have their own children. This desire, like their knowledge of fertility status, was consistent across age, sex, and marital status as well as the type of cancer, age of diagnosis and time since diagnosis.

Two-thirds of survivors said that the inability to have children would cause significant distress. Female survivors reported more potential distress than males, and survivors who were married or had partners reported more distress than single survivors.

“The most likely reason fertility is not addressed is that when a child is diagnosed with cancer, all focus is on curing the disease,” says Dr. Gerhardt, who is also an associate professor of pediatrics at The Ohio State University College of Medicine.

That’s problematic, she says. “There’s a small window between diagnosis and the beginning of treatment. Children may be eligible for sperm banking or other (fertility preservation) options but that discussion must take place early.”

“Regardless of whether fertility is addressed at diagnosis, it is vital that discussions about potential infertility and family planning happen throughout survivorship,” Dr. Lehmann says.

Current survivorship guidelines, however, suggest that health care providers wait until survivors initiate fertility conversations. “It’s questionable whether they are sufficiently informed to ask,” Dr. Gerhardt says. “I think we need to ask about these issues more frequently. Not only for those who want to become parents, but some survivors assume they’re infertile and have had unplanned pregnancies.”

Dr. Gerhardt and her colleagues say more research is needed to determine how and when to implement routine fertility counseling and/or offer fertility testing.

To learn more, the researchers are partnering with Leena Nahata, MD, Medical Director of the Fertility and Reproductive Health Program at Nationwide Children’s, to study parenthood goals in teen survivors and to identify opportunities to facilitate decision making about fertility preservation before treatment.

Although this study is limited to cancer survivors, Dr. Gerhardt suggests the need for counseling and testing applies to survivors of other pediatric conditions and treatments that threaten fertility.

Citation: Lehmann V, Keim MC, Nahata L, Shultz EL, Klosky JL, Tuinman MA, Gerhardt CA. Fertility-related knowledge and reproductive goals in childhood cancer survivors: short communication. Human Reproduction. 2017 Nov 1;32(11):2250-2253 .

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