More often than not, when parents of young daughters with cancer speak with oncology social worker Angelique Caba, they do not bring up pregnancy. Instead, they are focused on one thing: How do I treat my child's cancer so it never comes back?
"Fertility is not the first thought that comes to mind," Caba told The Huffington Post. "Often, it's the furthest thing from their minds."
Women who had cancer as children are at greater risk for infertility. There's encouraging news for these women, however, in a study published in Lancet Oncology this week, which found that nearly two-thirds of those who tried and failed to get pregnant for at least one year eventually went on to conceive.
"We knew that women treated for childhood cancer have a higher risk of infertility, but what we found out from this study is that when you really hone in on the women trying to have children, they are able to achieve pregnancy more than we expected," said Dr. Lisa Diller, chief medical officer of the Dana-Farber/Children's Hospital Cancer Center and an author on the study.
The study included more than 3,500 sexually active female cancer survivors, age 18 to 39, who were 21 or younger when they were diagnosed between 1970 and 1986. Researchers compared their self-reported pregnancy outcomes to those of their cancer-free sisters.
Nearly 13 percent of the women who had survived cancer during childhood experienced "clinical infertility," defined as not being able to get pregnant after having frequent, unprotected sex for one year. All told, 16 percent experienced some form of infertility, a group that also included women who never got their period and those who stopped menstruating within the last five years.
Overall, those rates translated to a roughly 50 percent higher risk of infertility among childhood cancer survivors.
Yet nearly two-thirds of survivors who met the standards for clinical infertility were eventually able to conceive, despite being only half as likely as their siblings to be prescribed fertility drugs.
"The really surprising finding is that the doctors who [the survivors] saw were reluctant to treat them," Diller said. "That suggests we have a lot of room to grow."
It is unclear why doctors were seemingly reluctant to suggest fertility treatment. The researchers believe doctors might think such treatments are unlikely to be successful, or that they might be uncomfortable with the risk of complications. Survivors also may not be interested in taking more drugs after having endured strenuous treatments in the past.
But studies suggest that at least three-quarters of young women hope to have a baby after receiving a cancer diagnosis. Female cancer survivors are more likely to experience early menopause, and many children, teens and women in their 20s and 30s receive little to no information about their fertility options prior to cancer treatment.
A March 2012 study found that although women who received specialized counseling about potential fertility problems and the fertility preservation options available to them experienced less regret and better quality of life as survivors, only 61 percent were counseled by their oncology team, 5 percent were counseled by fertility specialists and 4 percent took steps, such as egg freezing, to preserve their fertility.
"I don't think every patient should go through fertility treatment, but I do think that every patient should have the opportunity to be counseled on it," said Dr. Mitchell Rosen, director of the University of California at San Francisco's Fertility Preservation Program and an author on that study. Many young patients and their parents do not want to delay treatment, and taking steps to preserve fertility often means putting it off for a matter of weeks or months.
Caba, the oncology social worker with CancerCare, remembered speaking with one mother whose daughter had been diagnosed with ovarian cancer at 17 and who had undergone a hysterectomy, the removal of part or all of a woman's uterus. Prior to surgery, no one had talked to either the mother or daughter about subsequent fertility. It was not even something the mother thought about -- she was focused solely on getting her daughter well.
"At that point, the conversation changes, becase it's less about fertility preservation, and more about coping with the emotional impact of infertility ... using an egg donor, or adoption," said Caba.
Because fertility preservation counseling is often overlooked, Rosen said he was especially "reassured" by the findings of the new study, as they show a majority of women who survive cancer as children were able to get pregnant regardless of whether they took early precautions. He cautioned, however, that the study might underestimate the actual scope of the problem: The median age of women when they took the questionnaire before joining the study was 27, and increasingly women are delaying childbirth.
The National Cancer Institutes estimates that 1 to 2 per every 10,000 U.S. children age 14 and younger develop cancer each year, and that around 70,000 15-to-39 year olds are diagnosed with the disease.
Update: This story has been clarified to reflect that of the 16 percent of childhood cancers who experienced infertility, 13 percent had clinical infertility and the remaining had ovarian failure.