Managing Expectations

Lindsay Morgenstern was a junior in high school in New Brighton, Minn., in 2005 when she received a diagnosis of ovarian cancer. She underwent surgery to remove her right ovary and fallopian tube and was treated with three chemotherapy drugs for three months. The treatment was successful, and Morgenstern resumed life as a high school student.

That experience helped Morgenstern decide on a career in the medical field. After earning her bachelor's degree in biology from the University of St. Thomas in St. Paul, Minn., she was accepted into the Mayo Medical School, where she learned about fertility issues unique to cancer survivors. At the time of her treatment, she hadn't considered the impact it might have on her own fertility. "I thought because I was young and still had one ovary, I probably wouldn't have any problems conceiving a child," she says. But when she had a recurrence scare last year, her doctors sent her to a reproductive endocrinologist, who told her about fertility preservation. Although the scare turned out to be a benign tumor, it was a wake-up call for Morgenstern to consider her fertility options. Looking back, she says, "I just didn’t know what I didn’t know."

I thought because I was young and still had one ovary, I probably wouldn’t have any problems conceiving a child. I just didn’t know what I didn't know.

Not so long ago, cancer care focused almost entirely on curing patients of the disease. Today, with treatment advances improving survival rates, the focus is expanding to include a spectrum of quality-of-life issues, such as fertility preservation for adolescent and young adult (AYA) patients with cancer. Each year, about 70,000 of the 1.6 million Americans who receive a cancer diagnosis are from the AYA population, a group the National Cancer Institute defines as people between the ages of 15 and 39. During the past decade, this group has increasingly been recognized for its distinct social, psychological, financial and medical needs.

The importance of discussing fertility at the time of diagnosis is imperative. This past year, the National Comprehensive Cancer Network released guidelines for AYAs, stating that fertility preservation is "currently one of the most underprescribed and least implemented services in AYA patients with cancer," despite its importance to this patient population.

[View infographic: Fertility & Cancer]

"Oncologists have to let patients know that we don't always know what the impact of chemotherapy and other treatments on fertility will be," says Terri Woodard, a reproductive endocrinologist in charge of the fertility preservation program at the MD Anderson Cancer Center in Houston. "It's important, though, that patients have the opportunity to clarify their values and family planning goals prior to treatment when at all possible." This can enable them to take advantage of the various options available to preserve their fertility potential.

In women, infertility occurs when the ovaries are no longer able to produce eggs for ovulation or when the uterus is not able to carry a pregnancy. Men become infertile when they can no longer produce adequate sperm.

"Many of the cancer treatments that have improved survival may, unfortunately, cause infertility," says Joanne Frankel Kelvin, a clinical nurse specialist at Memorial Sloan-Kettering Cancer Center in New York and head of its Fertility Preservation and Parenthood After Cancer Treatment program. "Reproductive structures may have to be removed or could be damaged as a result of surgery or radiation. Chemotherapy and bone marrow and stem cell transplantation may destroy a woman’s eggs or cause men to no longer be able to produce sperm."

In general, the factors that determine the risk of infertility include age, the type and dose of chemotherapy, the location and dose of radiation, which organs were removed or damaged during surgery, and the patient’s fertility status prior to treatment. There are, however, many options women can consider to preserve fertility before treatment begins.

If they have at least two to three weeks before therapy begins, for example, women may be able to undergo ovarian stimulation followed by retrieval of mature eggs. They could then freeze the unfertilized eggs (a procedure that is now offered as standard care as the American Society for Reproductive Medicine and the American Society of Clinical Oncology no longer consider it experimental). Alternatively, the eggs could be fertilized with sperm and frozen as embryos for later use. Ovarian tissue freezing is an experimental option for women who cannot delay treatment for two to three weeks, and it requires removing all or part of an ovary. The ovarian tissue that contains eggs can then be implanted into the body at a later time.

[Why cost remains a hurdle in fertility preservation]

Patients receiving pelvic radiation might consider ovarian transposition (the surgical relocation of the ovaries away from the area of treatment), and some patients with early-stage cervical cancer can consider radical trachelectomy (a surgical procedure that removes the cervix and pelvic lymph nodes but leaves the uterus intact).

Men interested in preserving their fertility before treatment can bank their sperm. If they are receiving radiation to the pelvis or groin, the testes can be shielded.

However, like Morgenstern, many AYA cancer survivors who were unaware at the time of diagnosis about how treatment would impact fertility still have post-cancer treatment options. Knowing she was at risk of impaired fertility at an early age, Morgenstern chose, with her fiancé, Paul Warner (now her husband), to undergo embryo cryopreservation, which has been a standard fertility procedure for years. Morgenstern received hormone injections to stimulate her remaining ovary to produce eggs for extraction, while her fiancé produced sperm to fertilize those eggs. The process resulted in five embryos that were subsequently frozen and stored. They are ready for use if she’s unable to become pregnant. "I know that I should try to have children sooner rather than later if I want to get pregnant," says the now 24-year-old. "I was told that I have the egg reserves of someone in her 40s, so my time is limited."

Men who haven't banked sperm prior to treatment and learn they are infertile could still have sperm extracted directly from the testicles and injected into an egg to form an embryo.

[Read "Andropause & Menopause"]

If Morgenstern and her husband use their embryos, they will have a biological child. But AYAs who are infertile after treatment can still build a family. Their options include using donor sperm, eggs or embryos; choosing a gestational carrier (someone who carries the embryo created from the intended parents) or a surrogate (someone who contributes her egg and becomes pregnant through artificial insemination); or adopting a child.

[Read Gina Shaw's blog "Adopting after cancer"]

"As a rule," says Peter Shaw, director of the AYA oncology program at Children's Hospital of Pittsburgh, "the first thing an oncologist thinks about is treatment, but our job is to also offer patients information about how treatment can affect fertility and what their options are and will be." He says only a small percentage of AYAs with cancer are being treated at academic centers, where most cutting-edge treatments are offered. He stresses the importance of patients enrolling in clinical trials to take advantage of what could be groundbreaking therapies.

Although it is the clinician's responsibility to initiate these discussions, Frankel Kelvin encourages AYA patients to ask about fertility, despite the usual sense of urgency that surrounds cancer treatment. "Clinicians have to become more diligent about informing patients of options, but patients must become educated and know what questions to ask."