• Carrie Printz

Fertile Hope Spurred by Patient's Fertiliy Struggles

Physicians, advocates focus on preserving fertility for patients with cancer

When Lindsey Nohr Beck was 24, she was diagnosed with a recurrence of tongue cancer that required radiation, surgery, and chemotherapy. It was 1999, and her physician didn't initially tell her that the chemotherapy could affect her ability to have children. But when she pressed the issue, Nohr Beck learned the answer was “Yes.”

“I had the reaction that every oncologist fears–I refused treatment,” she says. “I was single and I thought, ‘What is the point of living if I can't live the life I imagined?’ How would I say to someone I was dating, ‘I’ve had cancer twice, and I'm infertile—do you want to be my Prince Charming?'”

Nohr Beck became determined to do all she could to preserve her fertility while fighting cancer. At the time, however, she was unable to find any information on the topic, Eventually, after making numerous calls, she found a center at Stanford University in Palo Alto, Calif., that had an egg-freezing program for cancer patients.

“It was very serendipitous—they were fast, efficient, and very hopeful,” she says. “Twelve days later, my eggs were frozen.”

Eventually, Nohr Beck was able to have 2 children without using her frozen eggs, but she still may use them someday because her treatment will put her into carly menopause. The experience led her to create Fertile Hope, the only nonprofit organization dedicated to helping men, women, and children with cancer preserve their fertility. The New York-based organization, founded in 2001, provides awarness and education among patients and the medical community, a referral guide, and patient support. Fertile Hope also facilitates financial aid for patients and works closely with researchers in the field.

Helping Patients Who Are At Risk

Each year, some 140,000 patients will be diagnosed with cancer during their reproductive years (up to age 45 years); approximately 90% of those patients will be at risk for infertility or premature ovarian failure from their treatments, according to Fertile Hope.

Our first goal is to use less damaging medications or aggressive surgery that affect fertility… —Kutluk Oktay, MD

By negotiating with reproductive centers and pharmaceutical companies, the organization has helped significantly reduce costs for cancer patients, who usually are under a time crunch to undergo fertility preservation before they begin their cancer treatment. “We've helped about 700 people save more than $2 million,” Nohr Beck notes.

Fertile Hope staff members have given more than 250 presentations to physicians and others at cancer centers around the country. In addition, the organization offers a risk calculator on its web site (, which enables patients to enter the type of treatment they're receiving and determine their risk of infertility.

“When we started Fertile Hope, our mission was that everyone should be informed of their fertility risks,” Nohr Beck says. She cites a study by Leslie Schover, PhD, a professor at M.D. Anderson Cancer Center in Houston, Texas, that surveyed 904 male patients between the ages of 14 and 40 years and found that only 60% recalled being informed about infertility as a possible side effect and only 51% had been offered sperm banking.1

Increasing Awareness, Improving Technology

Our goal is to bring discussion about fertility options right into the moment of the initial cancer diagnosis, creating a brand new way of thinking about the disease. —Theresa Woodruff, PhD

Awareness has increased significantly since then, say various experts in the field. Not only are oncologists and survivorship advocates payingmore attention to the issue, but the technology for fertility preservation has improved.

“In the last 10 years, the success rates for egg freezing improved to within 30% less than the success rate of IVF [in vitro fertilization] with fresh eggs,” says Kutluk Oktay, MD, a fertility preservation pioneer,professor of obstetrics and gynecology at New York Medical College in Valhalla, NY, and medical director of the Institute of Fertility Preservation (a division of the Center for Human Reproduction) in New York City.

Dr. Oktay and Fertile Hope helped develop the American Society for Clinical Oncology's first guidelines on cancer treatment and fertility, which significantly increased awareness.

And in 2007, Northwestern University's Feinberg School of Medicine in Chicago, Illinois.was awarded a $21 million grant from the National Institutes of Health (NIH) to develop the Oncofertility Consortium—a national research, clinical, and education program targeting fertility threats posed to men,women, and children by cancer treatment.

The consortium is headed by leading fertility researcher TheresaWoodruff,PhD,professor of obstetrics and gynecology at Northwestern and former associate director for basic sciences at the Robert H.Lurie Comprehensive Cancer Center at Northwestern. Dr. Woodruff coined the term “oncofertility” to define the new discipline, in which cancer treatment and fertility health intersect.

“Our goal is to bring discussion about fertility options right into the moment of the initial cancer diagnosis, creating a brand new way of thinking about the disease,” says Dr. Woodruff. “This radically changes the narrative ofwhat itmeans to be a cancer patient. It assumes you're eventually going to be a healthy person who has overcome the disease.”

The consortium is comprised of an interdisciplinary team of biomedical and social scientists, oncologists,pediatricians, engineers, educators, social workers,and medical ethicists from Northwestern and the University of California San Diego, University of Pennsylvania in Philadelphia, University ofMissouri in Columbia,and Oregon Health and Science University in Portland.Their research includes a thorough examination of the scientific, medical, psychological, legal, and ethical issues surrounding infertility and cancer.

The consortium is looking at issues such as making new fertility preservation technologies affordable, assessing how extraordinary stress affects women's decisions, developing new strategies to improve communication with newly diagnosed cancer patients, and developing new and improved methods of fertility preservation.

Coordinating Better Fertility Care

Another component is a new position at the Feinberg School, believed to be the first in the nation, called the fertility preservation patient navigator. This person will help every newly diagnosed woman and teenaged girl determine the best options to preserve her reproductive health before starting cancer therapy. The navigator will coordinate the plan with the patient's physicians.

The consortium has created a web site,, to teach patients about the potential effect of cancer and treatments on their fertility, options to preserve their fertility, and other resources for discussing these issues with their physicians. Now, researchers are beginning to focus on helping providers.

“We don't want to beat up oncologists on this issue; we want them to know that there are new hope and new options,” says Dr.Woodruff.

Dr.Oktay,who serves as a consulting physician at Memorial Sloan-Kettering Cancer Center in NewYork, also is trying to improve coordination among oncologists and reproductive-medicine experts. He developed and performed the world's first ovarian transplantation procedures and pioneered new ovarian stimulation protocols for embryo and egg freezing for breast and endometrial cancer patients.

“With every case that is referred to me from the cancer center, decisions are made jointly by the patient's oncologist, me, a psychologist, and sometimes other doctors,” Dr. Oktay says, adding he is unaware of any other cancer center nationwide that has a reproductive endocrinologist on staff. “We're leading the prototype here.”

He adds that he can perform egg or ovarian-tissue collection at the same time a patient is undergoing cancer surgery.

“Sometimes I can look at the tissue during the surgery and make a decision as to whether or not it's worth taking it,” he says. “Or I can encourage the surgeons to elect a more conservative surgery that would save an ovary, if it's within reasonable medical guidelines.”

Eighty percent of Dr. Oktay's patients decide to undergo embryo or egg freezing, whereas another 20% choose ovarian tissue freezing. Half of the latter group are younger than age 30 years.Between 30 and 40 ovarian-tissue transplants have been performed worldwide, leading to the births of about 7 or 8 babies, he says.

“It's still in the relatively early stages,and it doesn't require ovarian stimulation or a partner,”Dr.Oktay notes.“For prepubescent children, it's pretty much the only ethical option.”

He has had cancer patients as young as 3 years old undergo the ovarian tissue freezing.Whenever possible,however, he uses the more established methods of embryo and egg freezing.

Researchers also are looking at ways to freeze testicular tissue in prepubescent boys for future transplantation, but Dr. Oktay says he has not heard any reports of successful transplants. In addition, he is researching targeted drugs in the laboratory that patients could take during chemotherapy to protect germ cells and preserve their fertility.

“Our first goal is to use less damaging medications or aggressive surgery that affect fertility, and the discussions we have with oncologists may bring up some of those possibilities,” Dr.Oktay says.

Medical Ethicist Weighs in on Oncofertility

Laurie Zoloth, PhD, spends a lot of time thinking about the ethical issues raised by fertility preservation for cancer patients. As director of the Center for Bioethics, Science, and Society at Northwestern University in Chicago, Illinois, Dr. Zoloth is part of the Oncofertility Consortium funded by the National Institutes of Health (NIH).

“Our role is to ask the tough questions, and we may be quite critical,” says Dr. Zoloth. “As bioethicists, all we have is the power of words.We make an argument for what we think is the moral activity, but we're not the moral police.”

As part of the consortium, a national board of bioethicists from around the country holds an annual meeting to discuss topics, working closely with colleagues from Northwestern's law school.

Among the many issues Dr. Zoloth and her team are raising is the need to ensure that the cost of tissue and egg storage is not a burden on patients. They also are addressing the fact that when you can harvest ovarian follicles and produce numerous eggs, the need for stem cell donors is alleviated.

“One of the fascinating things for ethicists is that this is a science that has a mutable knowledge base, and it takes different directions,” says Dr. Zoloth. “We have to talk very closely with scientists so we can understand the questions and problems as they're emerging.”

Dr. Zoloth also teaches an undergraduate course on research ethics in oncofertility. Students research 7 religious traditions to determine what these have to say about women's bodies, reproduction, and death. They also visit Dr.Woodruff's laboratory to learn more about her research.