Fertility after cancer: Young women less likely to be told about options

New study finds young male cancer patients twice as likely to be counseled on preserving fertility
Rose Ibarra and son, August
Rose Ibarra, a 29-year-old cancer survivor, shown with her 2-month-old son, August. While she was counseled on options to preserve her fertility before starting chemotherapy, many young women aren’t, a new study finds. Photo by Lynette Johnson

Sometimes you’ll find a gender gap where you least expect it.

For young men and women diagnosed with cancer, many face the prospect of chemotherapy that can leave them infertile for life.

Yet a new nationwide study by researchers at Fred Hutchinson Cancer Research Center and Seattle Children’s reveals that young male patients were twice as likely as young women to be counseled on ways to preserve their fertility, such as freezing sperm or eggs.

And while about one-third of the male cancer patients in the study went on to bank their sperm, that fertility preservation rate was four to five times higher than that of young women cancer patients choosing to have their eggs harvested and stored, found the study, which was published online Monday by Cancer, the journal of the American Cancer Society.  

“It was disappointing to hear that, but I’m not surprised,” said Rose Ibarra, a 29-year-old Seattle woman who had her eggs frozen in 2011, just two days before she began chemotherapy for stage 4 non-Hodgkin lymphoma.

Although Ibarra’s lymphoma had metastasized to her bone marrow and spinal fluid, after treatment at Seattle Cancer Care Alliance and UW Medical Center, she has been cancer-free for four years. Remarkably, her fertility recovered as well and she did not need her frozen eggs. Two months ago, she gave birth to her first child, her son August.

“Young adults (with cancer) face issues that children and other adults don’t. Fertility is the biggest one,” said Ibarra, who is the founder of Thrive Through Cancer, a non-profit for young cancer patients (ages 18-40).

For the new study, researchers queried 459 patients from seven different regions across the country, including the Seattle-Puget Sound area. Study co-author Dr. Stephen Schwartz, an epidemiologist in Fred Hutch’s Public Health Sciences Division, said the findings are the latest in a series of studies focused on the experiences of cancer survivors, and is the first of its kind to assess what social and economic factors may play a role when younger cancer patients confront fertility loss.

The study found that overall, 80 percent of young men and 74 percent of young women reported being told that cancer treatment could affect their fertility. But the authors also found that male patients were twice as likely as their female counterparts to be counseled on specific options to preserve their fertility.

“The main explanation for this is that, for men, it’s fairly easy to provide a sperm sample,” said Schwartz. “And the concept of sperm banking has been around a long time.”

Egg preservation for women, on the other hand, is a relatively newer idea, and it is made more complicated by cost and timing. Eggs can be harvested only during a narrow window of a woman’s menstrual cycle, and those who have a cancer diagnosis may have to make treatment decisions within days, not weeks. The process itself is invasive and requires a battery of hormones. It can cost $13,000 and is seldom covered by insurance.

Ibarra had private health insurance when she received her cancer diagnosis, but it did not cover fertility preservation. She was able to raise the $13,000 required with financial assistance from LIVESTRONG – Fertile Hope and her parents. “Cost and insurance are huge barriers,” she said. “That is very upsetting to me. We need a lot more attention and awareness on that issue.”

According to Susan Christofferson, administrator at Pacific NW Fertility in Seattle, private insurance that covers egg harvesting and preservation is rare. Only the insurance plans of the region’s largest companies tend to provide it. But “we have seen a few companies that did not provide coverage for fertility add it,” she said. “We can confirm that it is moving in the right direction, but very slowly.”

The study supports the notion that differences in fertility preservation counseling and decision-making are associated not only with gender, but by economic differences such as insurance coverage, income, education, and whether the patients themselves were already raising children. For example, men without private insurance were nearly three times more likely to have no discussions with their providers about fertility options; and women without private insurance were five times as likely to miss out on that basic discussion.

Ibarra said she cannot fathom why more young women, facing loss of fertility along with a cancer diagnosis, are not counseled about their options.

“The number who are informed? It should be 100 percent across the board,” said Ibarra, who is on leave from her communications job at Seattle Children’s. “I fear that sometimes providers are assuming a patient won’t be able to preserve their fertility, and are just jumping to conclusions and making decisions for the patient.”

The study was not large enough to determine whether race was a factor in fertility preservation decisions. While there were too few African American patients in the study to draw statistically meaningful conclusions, Schwartz said it was unsettling that, among the 17 African American males in the survey, not one banked sperm to preserve fertility. “It seems there should have been more opportunity for some of those patients,’’ he said.

The patients surveyed in the study received their cancer diagnosis between 2007 and 2008, shortly after the American Society of Clinical Oncology issued formal guidelines calling for cancer patients to be counseled on their fertility preservation options, and offered such services if they so choose.

Study lead author Dr. Margarett Shnorhavorian of Seattle Children’s said there was some evidence that the amount of counseling increased among study patients who were diagnosed in that second year.

“I am an optimist who believes things are improving,” she said. “But the challenge continues to be providing the resources so we can go beyond the conversation. This is very important to young adults with cancer. It is one of the most important topics.”

Sabin Russell is a staff writer at Fred Hutchinson Cancer Research Center. For two decades he covered medical science, global health and health care economics for the San Francisco Chronicle, and wrote extensively about infectious diseases, including HIV/AIDS. He was a Knight Science Journalism Fellow at MIT, and a freelance writer for the New York Times and Health Affairs. Reach him at srussell@fredhutch.org.

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