Saving for a Family
Holly Trandel was married on Oct. 1. Like any other bride, she juggled an endless to-do list before gliding down the aisle of St. Alphonsus Church in Chicago, the train of her fluted ivory silk gown sweeping between the oak pews.
Unlike other newlyweds, however, Trandel, 29, already has her future as a mother mapped out — five potential babies on ice at Northwestern Memorial Hospital, where she works as a community health educator.
Trandel was diagnosed with breast cancer in 2009, two months after getting engaged. But in many ways she considers herself lucky. Her cancer was caught early. It also happened to be discovered at the hospital that serves as the hub of the nationwide Oncofertility Consortium, a network of some 60 cancer centers where doctors take a larger-than-usual view of the aftereffects of cancer—namely, the impact of treatment on a patient's fertility.
What it means to survive cancer today is very different from what it meant 20 or even 10 years ago. Back then, doctors and patients approached cancer like a monster to be slain; surviving was the only goal. But as treatments have improved, cancer patients have begun demanding more than just survival. They want a return to life as usual. They want to be normal people, leading normal lives. They want to have babies.
Yet, as if having cancer weren't bad enough, curing it—depending on the recommended therapies—can reduce patients' future chance of having children or erase it entirely. It is a possibility faced by at least 10% of the 1.4 million Americans under age 40 who find out each year that they have cancer, caught off-guard in their prime childbearing years. Many of these 140,000 patients, including 12,500 children, are not informed about ways to safeguard their fertility. A study published in December in the Journal of Clinical Oncology found that only 47% of oncologists routinely refer their patients to fertility specialists.
Why? Some doctors worry that fertility preservation techniques will delay treatment. Others don't know exactly what their patients' options are; most oncology offices are neither set up to offer fertility counseling nor affiliated with reproductive oncologists who can. And in most cancer centers, it's not clear whose responsibility it is to handle questions of fertility—the oncologist's? The surgeon's? "It falls through the cracks," says Gwen Quinn, a specialist in reproductive health and cancer at the University of South Florida. "If patients say they don't care about that right now, they just want to get rid of the cancer, they need to be told that in five years they may feel differently. They should at least be informed."
Meet Your Fertility Navigator
Teresa Woodruff had heard too many stories of cancer survivors intent on starting a family only to discover that their bodies could not cooperate. Three years ago she coined the term oncofertility to refer to the burgeoning discipline at the intersection of oncology and reproductive medicine and launched the Oncofertility Consortium. With a $21.5 million grant from the National Institutes of Health, the consortium is studying why cancer drugs threaten fertility, trailblazing techniques to preserve fertility in cancer patients and training doctors to include fertility preservation as a standard part of cancer care. (See "More American Families Rely on Working Wife.")
At Northwestern Memorial Hospital, where Woodruff's consortium is based and where Trandel was treated, the staff now includes one of just a handful of "fertility navigators" nationwide—people whose mission is to assess patients who ultimately want children and immediately direct them to an expert on reproduction and cancer. Within just two days of her diagnosis, Trandel and her then fiancé, Rich Manprisio, found themselves in a fertility specialist's office being told that Trandel would likely face early menopause because of her chemotherapy and that if they wanted to be parents, they had better freeze some embryos. "I was kind of, like, I can't believe we are sitting here listening to this stuff," recalls Trandel.
Trandel underwent surgery to remove the cancer in June 2009; the next month, she began hormone shots. Doctors retrieved eight eggs; five of them were fertilized and frozen. Trandel's mother calls them her "grandsicles." After Trandel completes two years of tamoxifen, she will try to get pregnant. The thought of building a future family, she says, "has helped me through the tough times."
That so many oncologists fail to press patients to preserve their fertility rankles Dr. Sandra Carson, a professor of obstetrics and gynecology at the Warren Alpert Medical School of Brown University. "It sounds rather controlling, but patients have just received this devastating diagnosis, and it's all too much to process. You have to be almost parental in encouraging them to do this," she says.
How Best to Prepare
The solution for men is usually as simple as freezing sperm, but the reproductive cycle in women is far more complex. Depending on how quickly doctors need to forge ahead with cancer treatment, a woman can choose to harvest and freeze either eggs or embryos, assuming she has access to sperm—and time. The procedure takes up to two weeks. But a cutting-edge technique called ovarian tissue cryopreservation—in which an ovary or a piece of one is laparoscopically removed and frozen before cancer therapy, then transplanted once a woman decides she wants to get pregnant—can shrink that time to 15 minutes. Doctors have been studying the procedure for at least a decade, but it has only recently begun yielding results. To date, more than a dozen live births have been reported from transplanted frozen ovarian tissue, including the first in the U.S. to a cancer patient—6-lb., 13-oz. (3 kg) Grant Patrick Tucker, born May 27.
His mother, Amy Tucker, 32, of Columbia, Ill., had one of her ovaries removed in 1998 at age 20 when the technique was still experimental. That it happened at all was pure chance; Tucker's nurse had recently attended a lecture about the new procedure and mentioned it to her. In 2009, a year after getting married, Tucker, a Hodgkin's lymphoma survivor, had the ovary replaced, and within eight months, she was pregnant. "Every day I look at Grant and I'm like, You are truly a miracle," she says. "I am so grateful I was in the right place at the right time."
Dr. Sherman Silber, who treated Tucker, counts more than 60 specimens of frozen ovarian tissue "under lock and key" in his lab at St. Luke's Hospital in St. Louis. The procedure requires only small samples of ovary, since its payload of follicles is located in the outer millimeter of tissue, which is transplanted back in strips. Each week, Silber says he consults with another regretful cancer survivor who never froze her ovarian tissue because her oncologist had discouraged it or, worse, failed to even tell her about the possibility. "We should have 1,000 frozen," says Silber, who heads St. Luke's Infertility Center.
For many women with "liquid" cancers like Hodgkin's lymphoma or leukemia, however, ovarian transplants may not be ideal because the blood-borne nature of the disease means that cancer cells could have infiltrated the ovary. But such patients' options are expanding. In September, Brown's Carson announced that she had helped develop an artificial ovary that could one day be used to nurture immature eggs harvested from cancer patients to full maturity. And in Woodruff's lab at Northwestern, consortium scientists are working on other methods of maturing ovarian follicles outside the body, coaxing them in petri dishes into full-fledged fertilization-ready eggs. Developing eggs outside the body circumvents the need to reintroduce potentially cancerous ovarian tissue. "If we could get this right, it could change the way cancer diagnosis affects young women," says Woodruff.
The Costs and Questions
The evolving science aside, cancer patients face other roadblocks to fertility, like insurance—or, rather, the lack of it. Hardly any insurance plans cover cancer-related fertility preservation (freezing eggs or embryos costs $8,000 to $15,000), even though they pay for procedures like hair-loss treatment after chemo and postsurgery breast reconstruction. In the March issue of the Journal of Clinical Oncology, Lisa Campo-Engelstein, a senior research fellow at the Oncofertility Consortium, argued that infertility should be treated no differently from any other postcancer health issue. "Cancer patients are not infertile in the traditional way," says Campo-Engelstein, who is helping draft new federal regulations for pretreatment coverage. "If they want to preserve their fertility, they need to do that before their cancer treatment."
Then there are ethical minefields some patients must pick their way through. Consider cases of childhood cancer, for example. Should young girls have their ovaries harvested? "There could be an 8-year-old girl who doesn't even have a concept of what it means to reproduce and be a mother," says Dorothy Roberts, a professor of law at Northwestern University who specializes in reproductive rights and bioethics. Amid the philosophical debate, life and science march on. In April at Brown University, ovarian tissue was removed from an 18-month-old girl with cancer; she is believed to be the youngest child to undergo fertility preservation.
Even within the Oncofertility Consortium, experts have debated whether the ability to have biological children should be regarded as so critical. (Research shows that many cancer patients prefer conception to adoption.) At least two reasons it matters: studies suggest that adoption agencies tend to reject cancer survivors, and perhaps more important, the mere idea of having a baby can prop up a woman reeling from a diagnosis. "The overriding devastation we hear from women is that they won't be able to be parents," says Corey Whelan, program director at the American Fertility Association, a patient-advocacy organization.
That is why Teresa Woodruff in late September traded her white lab coat for a brown linen suit and addressed the Congressional Caucus for Women's Issues, which indirectly funds the consortium's work. She thanked the caucus for its support and pledged that the consortium's scientists, bioengineers, doctors, ethicists and academics would not rest until they solved the problem of having cancer and having babies. Because science owes it to people like Holly Trandel, preparing for her Mediterranean honeymoon cruise, to address not only that they survive but also how they live.
This article originally appeared in the October 11, 2010 issue of TIME.