Lauren Malloy and her husband, Fitzhugh, had just decided to start a family last year when she was diagnosed with breast cancer.
Already devastated by the diagnosis, she then learned that chemotherapy could make her infertile.
Malloy, 31, had options, however. She could "preserve" her fertility either by freezing her eggs, or by freezing embryos made with her eggs and her husband's sperm. Or she could take the chance that she still would be able to conceive a baby on her own.
Thousands of people of child-bearing age are diagnosed with cancer every year and suddenly faced with the decision of whether and how to preserve their fertility. Of the 125,000 people under the age of 45 diagnosed with cancer nationwide, about half will receive treatments that will affect their ability to have children, according to the Alliance for Fertility Preservation. Some are teenagers who have not yet considered having children and building families, much less pondered the future implications of infertility.
It is not only an emotional decision, but a huge financial commitment, with some procedures costing as much as $20,000. There are additional costs too, including yearly storage fees. Insurers aren't required to cover the procedures so it can be a huge out-of-pocket expense.
Malloy and her husband decided to make embryos, but the $15,000 price tag for the initial treatment set them back financially. And they're still paying for it.
"We just didn't really want to gamble with the possibility of not being able to bring a child into this world," Malloy said.
To help people like the Malloys cope with the expense, there is a national push to get insurance companies to cover the costs of fertility treatments for cancer patients. Several states, including Connecticut, Illinois, Kentucky and New York, are considering legislation requiring insurers to do so, according to the Alliance for Fertility Preservation.
State Sen. James N. Mathias Jr. and Del. Cory V. McCray, both Democrats, introduced such legislation this year, but it was put on hold so a study could be done to look at the costs. Mathias, whose wife died of breast cancer, is active in pushing cancer-related legislation. Both he and McCray said they would continue to fight for a fertility preservation law.
In other states, opposition generally has come from insurers against another more mandated coverage. In some instances the Catholic Church has opposed such procedures on religious and moral grounds, according to the Alliance for Fertility Preservation. CareFirst BlueCross BlueShield, the state's largest insurer, declined to give its position on covering fertility treatments for cancer patients.
Any mandated increase in insurance coverage likely would increase insurance costs for all, health economists said.
Insurance companies weigh a variety of factors when deciding what coverage to offer, said Kevin Frick, a professor of health economics and vice dean for education at the Johns Hopkins Carey Business School. They examine costs and risks associated with a treatment; they look at whether a procedure is elective or medically necessary.
In this case, they also would look at long-term issues, such as whether they would have to cover a not just the harvesting of a woman's eggs, but the fertilization and implantation of the embryo years later.
"What if she passes away, but her partner wants to fertilize the eggs?" Frick said. "Who pays for that?"
The issue of infertility in cancer survivors first emerged as cancer treatment improved and fewer people died from the disease. In the past decade, the counseling that comes just prior to treatment has included talks between doctors and patients about how to preserve fertility. But many patients can't afford to do it.
"Patients are getting all this knowledge, but then there is huge financial barrier that prevents young patients from potentially having families after treatment," said Brock Yetso, president and CEO of the Ulman Cancer Fund for Young Adults, which supports insurers covering fertility procedures.
Treatment can hurt fertility in two main ways and to varying degrees. Chemotherapy and radiation can damage the reproductive organs and cells, and the glands that produce key hormones. Women may no longer produce eggs after radiation to the pelvis, for instance. The treatment for some cancers requires the removal of the reproductive organs. A woman may have to get a hysterectomy, or a man may have his testicles removed and no longer be able to produce sperm.
Some treatment options allow a woman's ovaries to be moved out of radiation range, said Dr. Dana Roque, an assistant professor in the division of gynecologic oncology at the University of Maryland School of Medicine. But while the woman still would produce eggs, she would need a surrogate to carry a fetus because the uterus could not support a fetus after exposure to radiation.
Decisions about fertility preservation often have to be made quickly and it might not be an option for some patients. Teenage leukemia patients typically wouldn't be good candidates because they usually are already sick when diagnosed and need treatment immediately, said Dr. Gilbert Mottla, a specialist with Shady Grove Fertility. A breast cancer patient may be able to delay treatment for a few weeks to make a decision without affecting her outcome, Mottla said.
"We tell patients their health comes first," Mottla said. "We don't want to impede anything thing that would impact someone's health."
If insurance covered the costs of fertility preservation, Roque said, that could take pressure off cancer patients and their families.
"In some cases, parents are helping their kids make life decisions before they can even begin to fathom these things," she said.
Jamie Phillips was diagnosed with non-Hodgkin's lymphoma last year at the age of 17. He was caught off guard when doctors started talking to him about fertility. They asked if he wanted to bank his sperm.
"Wow, this is a weird conversation," he said he thought at the time.
After talking it over with his mom, Phillips decided to go through with the procedure, despite the $600 it would cost to have the sperm banked. There is also a $600 annual storage fee.
"I wanted him to experience being a father and I needed some grandchildren," said his mother, Valerie Phillips, a Baltimore schoolteacher.
The two now support efforts to get insurance companies to cover the cost of fertility preservation because of the potential for financial hardship.
"Cancer takes away enough from patients, it should not take away our hope of becoming parents," Jamie Phillips said.
Thousands of cancer survivors do go on to have healthy children, including those who went through fertility preservation, according to a study by researchers at the University of North Carolina Lineberger Comprehensive Cancer Center.
The study, released in March, is one of the few that has focused on the impact of cancer treatments on children born to women diagnosed and treated for cancer during their childbearing years. The study also found, however, that cancer survivors were more likely to give birth to premature babies and to babies with low birth weights. Affected women also had higher rates of deliveries by cesarean section.
The researchers said although they need to build on their findings, the study could help shape standards of care for pregnant cancer survivors in the future.
"This was really a first step to understand if these women could have healthy babies and if there were long-term consequences," said senior author Hazel B. Nichols, a UNC Lineberger member and assistant professor in the UNC Gillings School of Global Public Health.
Lauren Malloy, meanwhile, looks forward to the day when she and her husband can begin trying again to have a family.
She was diagnosed with cancer after feeling a lump in her right breast. During surgery to remove the small tumor, the doctor found the cancer had spread to her lymph nodes and concluded she would need chemotherapy. That's when she had to think about protecting her fertility.
The costs of in vitro fertilization and freezing her embryos have been overwhelming. The Livestrong Foundation paid for around $5,000 worth of medication used for the procedure, but she and her husband still had to turn to family and friends for financial help. They also went on a payment plan for the remaining costs.
But they say it is worth it to have the chance to start a family.
"Having children has been a part of our life plans since before we were even married," Malloy said.
They even have a possible name for a baby girl — Lyla.