Young Cancer Patients Rarely Get Help, Information On Fertility Issues

'It Was Extremely Difficult For Me To Plan For A Future When I Knew I May Not Be There To See It'

When Gina Danford went in to have an 8-pound ovarian tumor removed from her ovary, her prognosis was grim.

Worst case, the cancer had spread and she did not have long to live. Best case, Danford would make it through surgery, chemotherapy and radiation, but would never have children. She was 19 at the time.

Her doctors found the tumor was completely contained and Danford was able to forgo chemotherapy and radiation, clinging to a distant hope of one day becoming a mom. Every three months she saw a doctor who monitored her health -- a routine that persisted for nearly a decade, until doctors found a second ovarian mass. That one was benign. Two years later, they found another.

"I had been so fortunate the first few times, I thought, ‘Is this it?'" said Danford. "'Is my number up this time?’"

Though speed was important, Danford's oncologist urged her to meet with a reproductive endocrinologist -- a physician who specializes in fertility medicine -- before she went in for surgery. She had dealt with cancer for years, but it was the first time a doctor had spoken to her in any depth about fertility preservation options.

"It was hard to think beyond the next doctor's appointment and what that meant, and what we would find out at the next test," Danford, now 37, said. "It was extremely difficult for me to plan for a future when I knew I may not be there to see it."

According to National Cancer Institute estimates, about 70,000 15- to 39-year-olds are diagnosed with cancer in the U.S. each year. Research suggests that at least three-quarters of young, childless men and women with cancer want to have children some day, and thanks to advancements in detection and treatment, many now live long enough to have that chance. Recent estimates put the five-year relative survival rate for all cancers at 67 percent, up from just under 50 percent in the 1970s.

But the same treatments that help cancer patients survive -- chemotherapy, radiation and surgery -- can also destroy young survivors' fertility. Chemo and radiation damage a woman's eggs and ovaries, and hurt men's sperm production. Cancers that require surgery on parts of the reproductive system can also lead to infertility. The key, groups like the American Cancer Society stress, is discussing fertility preservation before treatment ever begins.

Yet a growing body of scientific literature suggests that often does not happen.

A widely covered 2011 California-based study, published in the journal Cancer (and co-authored by Danford's reproductive endocrinologist, Dr. Mitchell Rosen, director of the University of California at San Francisco's Fertility Preservation Program), found that 61 percent of young women with cancer were at least told about the damage treatments might cause, but only 4 percent actually took steps to preserve their eggs or embryos. Other studies have put rates of fertility counseling between 34 and 72 percent.

"I'd say it's 50-50 at best," said Dr. Kutluk Oktay, director of the division of reproductive medicine and infertility at the New York Medical College.

He co-chaired an American Society of Clinical Oncology panel that, in 2006, released guidelines on fertility preservation in cancer patients. It concluded that oncologists should talk to patients about the possibility of infertility as a result of cancer treatment as early as possible. A revision of that report should be out within the next year, Oktay said.

"We're going to be more forceful," he said. "With the first recommendations, we were a little bit wishy-washy. Now we have more evidence that [fertility preservation] works. We have more options."

The new guidelines will reflect the American Society for Reproductive Medicine's recent decision that egg freezing is not an "experimental" procedure. Pregnancy rates and the health of children born from frozen eggs are comparable to using in vitro fertilization with fresh eggs, the ASRM concluded.

"What this means, is that now when I see these [young] patients, I feel a little better assuring them that egg banking is safe and effective," said Dr. Wendy Vitek, head of the fertility preservation program at the University of Rochester's Strong Fertility center. Embryo freezing is another option, she said, as is freezing ovarian tissues, although the latter is "quite experimental" and reserved for pre-pubertal girls who do not have eggs to freeze. For men, preservation is generally easier -- they can simply freeze sperm samples.

But despite the proliferation of preservation options, treatment is expensive and not generally covered by health insurance. The Oncofertility Consortium estimates that options for women start at $10,000 and can easily run up to $20,000.

For men, costs are lower -- about $250 to $400 per ejaculate, plus yearly storage fees, said Grace Centola, president of the Society for Male Reproduction. Though some non-profits provide financial assistance, costs are often too high for young cancer survivors who are just beginning to earn a living.

Danford, who decided to have her eggs frozen before she had her most recent ovarian tumor (also benign) removed, had no insurance coverage for the procedure. Including the egg retrieval, storage fees and three frozen transfers, she and her husband spent more than $30,000, with the help of a loan from their parents.

But research suggests there are other barriers to treatment, including a July study, which Rosen co-authored in the Journal of Cancer Survivorship. It found that half of reproductive-age, California-based women with cancer were not told about the reproductive health risks from cancer therapy and only 12 percent had received fertility preservation counseling. When asked why they felt their doctors hadn't brought it up, women's reasons were consistent -- among them, an uncertain prognosis, the fact that they already had children and age -- being seen as too young or too old to worry about having kids.

"I wish that [my doctors] had grabbed me by the shoulders and said, 'If you don't harvest [your] eggs, you will not have the possibility of having a child!'" one study participant said.

"The doctors basically said that my chances of having more children weren’t good, but, at least I already had children, so I should be content with that," another participant said. "No one explained to me that there might be other options that I could look at. It was presented to me as if this was just one more consequence of my having cancer, and something I had no choice about."

But in some cases, preservation simply is not an option.

Erika Lade, a graduate student in food studies at New York University and a HuffPost blogger, was diagnosed with stage 3 breast cancer when she was 28. Because the cancer was so aggressive, there was no window for egg harvesting and in-depth fertility counseling would not have changed that. But Lade said she wishes she had received more information about what would happen.

"Nobody said that I had an 85 percent chance my period would come back after I was finished with [the drug] Lupron and chemo," she said.

She confided in friends about her fear that she was going into early menopause and would never be a mother, but it wasn't until the topic "randomly" came up in a conversation with her surgeon that she learned there was, in fact, a good chance she could have a child eventually.

"I was like, 'Whaaat?' No one told me!" Lade said. "You're dealing with so much information in the beginning, there's so much to digest, it gets overwhelming.

In Danford's case, being urged by her oncologist to speak with a fertility specialist that led to her having a baby. Though she said she underestimated how grueling fertility treatment would be, both physically and emotionally, she is thrilled to be mom to Samantha Grace, now 2.

"She's incredible," Danford said. "She's a little person now -- she's talking. She was frozen for almost four years, but she's healthy as can be."

"It wasn't an easy choice, but I think it's a choice every person should have."

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