What to Expect When You're Not Expecting—Yet

Geri Bell has survived breast cancer—twice. And despite very long odds, she still hasn’t given up on being a mom.

That’s the brave new world of fertility preservation, where patients like Bell push advancing cancer treatments into uncharted territory. Now 41, she was first diagnosed at the disconcerting age of 30. She sailed through treatment, never missing a day of work. The chemo consent form she signed no doubt warned that sterility was a possible side effect, but no medical professional actually brought it up. And she kept getting her period, so there was still hope.

Five years later, when Bell was diagnosed with a small tumor in the same region of the same breast, she held a “farewell to my boobs” party and followed through with a double mastectomy. But before pursuing a second round of chemo, she heard her biological clock ticking. She was 36, a year into what seemed like a promising relationship, and she decided to investigate her options. With no help from either her insurance company or her oncologist, she finally connected with a study at the H. Lee Moffitt Cancer Center & Research Institute in Tampa, testing a new cryopreservation technique.

It wasn’t ideal—in vitro fertilization (IVF) uses an expensive cocktail of drugs to encourage the ovaries to produce extra eggs for harvest. She had to pay for the drugs and for procedural costs such as anesthesia, but at least some of the hefty price tag was covered. During the ordeal of the second diagnosis she learned she carries the BRCA1 gene mutation, which puts her at risk for both breast and ovarian cancer. So after two rounds of IVF, she had her ovaries removed.

It’s not uncommon for those diagnosed with cancer to think first about their kids—and for younger cancer patients, that increasingly means worrying about kids they have yet to have. As cancer treatments improve, a larger percentage of young patients like Bell are looking to the ultimate survival stat: raising the next generation.

Fertility preservation specialist Kutluk Oktay, MD, knows this complex terrain well. Some 90 percent of patients at his suburban New York clinic, the Institute for Fertility Preservation (www.fertilitypreservation.org), are dealing with cancer.

Depending on disease and treatment details, women face a 40 to 80 percent risk of fertility loss following cancer treatment; men’s risk ranges slightly lower, from 30 to 75 percent. Oktay estimates that chemo and radiation therapy, combined with a few other extreme treatments, translate to about 5 percent of the general population being at risk of infertility or gonadal failure during their reproductive years. Recognizing this, in 2005 the American Society of Clinical Oncology established guidelines: patients of childbearing age should be given information about fertility and referred to fertility specialists.

But research at Moffitt, presented last year at ASCO’s annual meeting, suggests less than stellar compliance with ASCO guidelines—less than half of the doctors surveyed follow the guidelines. The barriers are many: Physicians have little enough time with patients, and treatment often begins quickly, leaving no time for an egg-harvesting cycle that typically takes two months. And the emotional range of a conversation that begins with “You have a 20 percent chance of survival” and ends with “Have you thought about having kids?” is almost unfathomable. It’s not surprising that even physicians who support fertility preservation may reserve the right to decide whether or not it’s appropriate to share the option with any given patient.

Then there is the money. Collecting and saving male sperm might run to only $700 the first year, and $500 per storage year after that, but for women the costs of fertility preservation start north of $20,000. Oktay estimates that a third of his patients are covered by insurance based on medical necessity, but the remainder are either drawing down savings or maxing out credit. In the Moffitt study, physicians reported that the cost to the patient was a major concern for preserving fertility.

Gwendolyn P. Quinn, PhD, the Moffitt researcher who led the study on how well doctors follow through on the ASCO fertility preservation guidelines, observes that despite the obvious needs and rights, fertility preservation opens a huge Pandora’s box of ethical and moral issues.

She recalls the case of a young man urged by his parents to bank his sperm 10 years ago, before treatment. He refused, but survived. He then went on to marry young, and struggled for five years to have children. Eventually the marriage dissolved over his infertility. “Why didn’t you make me?” he asked his parents later. “You knew I didn’t know any better.”

“It’s tough to make those decisions on behalf of a child,” observes Quinn.

Still, in most all cases the decision should be the patient’s choice—and prerogative. Doctors may not have the answers, but they still need to provide the information, Quinn argues. Even if nothing can be done, it’s still important to grieve.

For Bell, her path came with a potentially serious consequence: Because it took some time to even define and find her choices, by the time she was done with the egg harvesting and the surgery to remove her ovaries, the time window for chemo had closed. She considers it a risk worth taking. “I’m alive, I’m surviving, I may have my own children.”

Oktay has seen scores of patients through similar trials. Not everybody is successful, but he believes that exploring every possibility helped them cope with cancer and treatment. Time is of the essence, though. “If you’re considering fertility preservation, see a specialist right away,” he counsels.

Today, she maintains her uterus with a low dose of hormones. And she’s still got five unfertilized eggs in storage, two embryos (the promising relationship didn’t work out), and two maxed-out credit cards. She knows the tab exceeds $40,000, but for sanity’s sake she’s never fully tallied the cost. “It’s only money,” she says, though not with the dismissive attitude of someone who has too much. “What’s more important?”

Insurance coverage is spotty—based on laws in effect as of July 2008, only 10 states mandate coverage for infertility treatments and/or coverage of IVF (Arkansas, Connecticut, Illinois, Maryland, Massachusetts, Montana, New Jersey, Ohio, Rhode Island, and West Virginia). California mandates an offer of coverage for infertility treatments, while a Texas mandate only requires an offer of coverage for IVF. From there it breaks down into a warren of bureaucratic limitations. States also define infertility, which further limits applicability for cancer patients. For example, some states define infertility as an inability to conceive after a year or more of sexual relations. And some mandate a minimum age of 25 for eligibility.

For patients who can’t afford the costs of fertility preservation, a number of organizations and clinics offer assistance. The nonprofit Fertile Hope offers a financial assistance program called Sharing Hope, as well as an online list of programs that provide assistance with fertility treatments and adoption (866-965-7205; www.fertilehope.org/financial-assistance/index.cfm).

Even physicians who support fertility preservation may reserve the right to decide whether or not it’s appropriate to share the option with any given patient.