When St. Jude Children’s Research Hospital opened a fertility clinic for patients in June of 2014, many young men and women with cancer suddenly were given hope.
Located on the St. Jude campus, the Fertility Clinic is available to both current patients and long-term survivors. The service offers hope to interested patients whose age, treatment stage and disease status make them eligible to participate. Not only does St. Jude cover the cost of harvesting eggs or sperm, but the hospital also covers the cost of storing those samples until patients reach age 35.
“At St. Jude, we’re committed to providing options to survivors,” says James Klosky, PhD, of St. Jude Psychology. “In many cases, survivorship comes at a cost. We want to offer interventions to relieve some of those difficulties.”
“I don’t know of any other institution in the United States that offers such a service,” says William Kutteh, MD, PhD, medical director of the clinic.
Lukas Etchison arrived at St. Jude last fall to begin treatment for the brain tumor medulloblastoma. One of his chief concerns was fertility preservation. “Because of this service, cancer survivors can go on to live normal lives, doing all the things that they dream of doing and that they think about as they’re growing up,” says his mom, Denise.
Like Lukas, many cancer patients have a high risk of infertility as a side effect of surgery, radiation therapy, chemotherapy or the disease itself. As survival rates have improved, fertility preservation has become increasingly important to patients and families. Klosky estimates that half of adolescent and young adult male cancer patients are at increased risk for infertility, with about 10 percent of female childhood cancer survivors having acute ovarian failure and an additional 15 percent entering menopause prematurely.
“In my long experience, the issue of fertility is second only to death as a concern of parents of newly diagnosed children,” says St. Jude Clinical Director Larry Kun, MD, who has treated children at St. Jude for three decades. Patients also perceive the issue as significant, says Klosky, who recently published a study in which adolescent males ranked having children among their top three life goals.
Lukas has a firsthand understanding of that sentiment. In September 2014, the Oklahoma native was diagnosed with a brain tumor called medulloblastoma. The cancer’s tentacles had spread into his spine. Therapy consists of 30 radiation treatments and four months of chemotherapy. One of Lukas’ first questions was whether the regimen might affect his ability to father children. The answer was yes.
“I definitely want to have a family someday,” Lukas says. “I’ve watched my parents, who’ve seemed happy raising my sister and me. I’d like to do the same thing, down the road.”
Soon after his arrival at St. Jude, Lukas met with Klosky to discuss fertility issues; as a result, the young man decided to bank his sperm. As Lukas faces the next few months of grueling treatments, he and his parents say they have one less complication to worry about.
“Because of this clinic, cancer survivors can go on to live normal lives, doing all the things that they dream of doing and that they think about as they’re growing up,” says Lukas’ mom, Denise.
Beyond the birds and bees
In the Fertility Clinic, Kutteh and Klosky meet with patients and their families—listening to concerns, discussing options. Patients visiting the clinic may be new to St. Jude, like Lukas, or long-term survivors.
“Not only do we see newly diagnosed patients, but we also see young adult patients who were treated here as children and who now want to get a better understanding of their fertility status,” Klosky explains.
He is quick to point out that the service is not appropriate for everyone.
“There are many, many features—whether cultural, religious, developmental or psychological—that can affect a family’s interest or perspective in terms of fertility preservation,” he says.
Some medical considerations may also prevent banking of sperm or eggs. Some children have not yet entered puberty, which medically precludes them from donating eggs or sperm. Other patients must begin treatment immediately in order to save their lives—and that treatment may also affect their fertility. Females may be particularly affected in such a situation, since harvesting eggs requires several weeks of hormone therapy followed by a surgical procedure.
Kutteh and Klosky work in tandem to address these and other issues.
“Dr. Kutteh focuses more on fertility preservation interventions, whereas I focus more on decision-making, psychological adjustment to fertility differences, and maintaining a sense of peace regardless of what preservation decision is made,” Klosky explains. “We want our patients to be aware of and engaged in discussions related to fertility risk, and to be satisfied with their decisions, whatever those may be.”
Beating the clock
Many times, Klosky and Kutteh feel like they are playing a “beat-the-clock” game—rushing to preserve fertility before cancer treatment begins.
One teenager recently arrived at St. Jude with a brain tumor. The head and spinal radiation necessary to save her life would also decimate her potential to have children. She and her parents wanted to bank and freeze her eggs, but the hormone treatments required to stimulate the ovaries would take 10 to 14 days. Because the girl’s tumor was aggressive, radiation therapy had to begin right away. With each radiation treatment, her fertility level diminished.
“There was a battle of who was going to win before her ovaries got wiped out,” Kutteh recalls. “I tracked her egg quality hormones. By the time we harvested the eggs, she had the egg quality of a 42-year-old woman. We just barely made it. We got 25 eggs, 23 of which were mature and are now in the freezer. The pregnancy rate in the future is predicted based on the number of mature eggs you get. With 23, she is in good shape.”
St. Jude is currently the only hospital in the U.S. to cover the expenses associated with harvesting and storing sperm and eggs until patients reach age 35. That policy eliminates one of the greatest barriers to fertility preservation for many childhood cancer patients: cost.
The knowledge that they have samples “in the bank” gives many patients a sense of assurance, according to Klosky.
“Research has shown that even if their materials are never used, just knowing that they’re available promotes significant reductions in fertility-related distress,” he says.
When patients reach the point at which they want to use those stored materials, they will be responsible for the cost of any necessary assistive reproductive technologies.
The St. Jude Fertility Clinic has given many St. Jude patients a sense of assurance—a glimpse of a future that may include motherhood or fatherhood. And that’s an exciting possibility.
Abridged from Promise, Winter 2015