Two years ago, Jenette Schafer got a chance many young cancer patients often miss: the ability to have biological children even if cancer treatments harm fertility.
She and her husband now await the birth of their first child, conceived from one of three embryos they had frozen before Jenette began chemotherapy.
“Never did I think in two years’ time I’d go from fighting for my life to bringing another life into this world,” said Jenette, 33. “It’s so exciting, and a true testament of being able to get through this and find that next piece in your life and happiness.”
She was engaged to Jon Schafer when, five months before their planned wedding, she got the diagnosis of breast cancer. He was at her side throughout
In the depths of darkness, it was a ray of hope.
“It’s this, ‘Hey, we have a future ahead of us; we just need to get through this,’ ” she said.
They’re at the forefront of an emerging field of medicine, called oncofertility, that blends the disciplines of oncology and reproductive medicine. Patients and their families now have fertility-preservation options at the time of a cancer diagnosis.
“That’s huge,” said Eric Surrey, a reproductive endocrinologist at the Colorado Center for Reproductive Medicine, one of the nation’s leading fertility clinics. “The parameters have changed. Thirty years ago, a diagnosis of almost any kind of cancer was close to a death sentence, but (survival rates) are now so good that other things very positive can be addressed.”
Many cancer patients not counseled
More than 220,000 people under age 39 are diagnosed with cancer each year, many during their child-bearing years. But more than a third of these patients aren’t receiving information early enough to protect their ability to have a biological family, experts say.
A study published in the September issue of the medical journal Cancer found that only 61 percent of women ages 18 to 40 were counseled on the risk of infertility because of cancer treatment. Just 4 percent pursued fertility preservation.
The study was based on 1,041 women diagnosed with five types of cancer — leukemia, Hodgkin’s disease, non-Hodgkin’s lymphoma, and breast and gastrointestinal cancers.
“Although awareness of fertility preservation has improved in the past decade, an unmet need remains for reproductive health counseling and fertility preservation in reproductive-age women diagnosed with cancer,” the report concluded.
In 2006, the American Society of Clinical Oncology published guidelines that recommended that oncologists discuss the possibility of infertility after cancer treatment with all patients and offer fertility-preservation options and referrals to specialists.
But recent studies found that fewer than half of oncologists in the U.S. follow the guidelines, according to the January 2011 “Cancer Bulletin” from the National Cancer Institute.
Many oncologists say they haven’t been educated in fertility-preservation options or that they worry about extra stress added onto the burden of a cancer diagnosis.
Sperm banks have long been a viable option for men, and the process is easier than reproductive technologies for women. Public awareness increased when Lance Armstrong, who was treated for testicular cancer, conceived three children with his wife using sperm he had banked.
Still, this option is not always taken.
“What’s a little sad is that it’s so easy for men to give sperm samples, but we see very few men getting their sperm frozen,” said Surrey.
Single women can have their unfertilized eggs frozen — a process that is no longer considered experimental and has about an 80 percent success rate, he said. Women who are married or in a stable relationship can have embryos frozen, which has a success rate of about 98 percent.
But such procedures are not covered by health insurance and can be costly — about $9,000 for freezing eggs and about $15,000 for in vitro fertilization and embryo preservation, along with an additional estimated $5,000 for medicines — on top of medical costs for cancer.
Adding stress upon stress
The schedule for surgery, fertility treatments, and chemotherapy and radiation treatments can increase the stress factor exponentially.
“When you hear about the fertility issue, you think, ‘Is cancer not enough?’ ” said Jenette Schafer. “We’re trying to fight cancer, and now you’re telling us we have to do all this right now? Just getting your brain around all the things that need to happen is overwhelming.”
Twenty days after being diagnosed with breast cancer, she had surgery. With chemotherapy scheduled to start about 10 weeks after that, the Schafers had little time for in vitro fertilization.
But they did it. Three embryos were frozen successfully.
“We were thrilled,” said Jon, 35. “We’d always joke, ‘We got three little babies on ice down there, and when one celebrates the fifth birthday, we’ll say, ‘You’re really 7.’ ”
Jenette recovered her health, and they had planned to spend 2012 focused on fun and travel.
But during a visit with one of Jon’s best friends from college, they talked about planning to have a family one day using the frozen embryos — and that friend’s sister-in-law offered to become a surrogate, or gestational carrier, for them. The embryo transfer took place Oct. 31, and their child is due in July.
Both say they would be dealing with anger if they had found out about fertility options after it was too late.
“Going through cancer, there are phases of grief,” Jenette said. “You have lost a part of you that you’re never going to get back. This would have been a huge setback in my healing process of moving past cancer because it would be yet another reminder of what it took from me.”
Instead, she’s looking forward to learning the gender of her baby next month.
The experience is becoming more common in the Denver area, experts say.
“We’re definitely seeing more and more patients referred from oncologists in a more efficient way,” said Surrey. “The issue of fertility preservation is coming more to the fore in oncology.”
But that is not true across all age groups.
“In pediatrics, it’s been a slower process,” said Kathleen Pool, a pediatric oncology nurse practitioner at Children’s Hospital Colorado.
“When kids are diagnosed, doctors are so focused on the cure, as they should be,” she said. “When someone is 14, you don’t really think about fertility.
“But we think about quality-of-life issues with survivors down the road. We don’t want them to come back 10 years later and say, ‘I understand you saved my life, but it would have been nice to know (treatment) would have this impact.’ ”
A team forms at Children’s
Children’s formed an oncofertility team in 2008, when a group of nurses concerned about their patients’ ability to have children in the future joined with a research fellow to review charts to see how many patients had been informed about fertility preservation.
“They found out it hadn’t been addressed very often,” said Pool, one of six members of the oncofertility team that works in conjunction with Advanced Reproductive Medicine at the University of Colorado, an institution staffed by national leaders in the field.
The CU team includes Laxmi Kondapalli, a fertility-preservation specialist. In 2006, Kondapalli helped write a grant that won funding from the National Institute of Health to start the Oncofertility Consortium at Northwestern University — an interdisciplinary network of researchers, physicians and scholars who explore the reproductive future for cancer survivors.
Cutting-edge research at the Oncofertility Consortium includes ovarian-tissue banking for prepubescent girls — an experimental procedure that involves taking part of the ovary, or a whole ovary, and freezing it for the patient’s use in the future. Prepubescent girls’ ovaries have immature eggs that aren’t able to be fertilized, so egg freezing is not possible for them.
While fertility is not uppermost in the minds of adolescent cancer patients, it is often urgent for those toward the end of the reproductive cycle.
Sarah Levine, a now-44-year-old Denver native who attended East High School, was married and living in Paris when she received a diagnosis of endometrial cancer. She was 40 and had already started IVF treatments, with no success.
“It was really overwhelming,” she said. “Suddenly, not only was I facing a cancer diagnosis, but there was also this horrible feeling that I would lose the fertility I was fighting so hard for over the past few years. It was a double attack.”
From that moment, she said, “it became like a real quest because I knew the treatment was a hysterectomy and I wouldn’t have a lot of options.”
She had embryos frozen, and, after cancer treatment and a prognosis of a long and healthy future, she and her husband located a surrogate in Denver who carried their first child.
“The biggest difference is that I no longer need to define myself by cancer,” she said by phone from Paris, after putting her 19-month-old son to bed. “I spent six months of my life fighting cancer and navigating all the treatment. Now I’m like any other mom at the playground.”