Cancer and Fertility Program, Memorial Sloan Kettering Cancer Center

At a time when many of their peers are planning families, each year more than 126,000 men and women between the ages of 20 and 45 years learn that they have cancer. Because the focus in the past was on treating the cancer, the question of fertility may not have been explored. But as more patients survive cancer, preserving fertility options has become a growing concern. To address this issue, the Survivorship Program at Memorial Sloan Kettering (MSK) Cancer Center launched the Cancer and Fertility Program in 2009.

Joanne Frankel Kelvin, MSN, RN, AOCN, a fertility clinical nurse specialist who leads MSK’s program, spoke with The Oncology Nurse-APN/PA about the steps needed to develop the program, how she became involved and educated herself about the issue, and her experience with patients, as well as some of the challenges and hopes—now and in the future.

How did you become interested in leading a fertility preservation program?
Joanne Frankel Kelvin (JFK): It was a confluence of events. I’ve been a nurse since 1976 and at MSK since 1987. I had been working as a manager for a number of years and wanted to return to patient care for the last phase of my career; however, I also wanted a role with leadership responsibilities, so I was exploring various possibilities. In 2003, MSK had started a cancer survivorship program and learned from surveys of survivors that many felt their fertility issues had not been adequately addressed at diagnosis. As part of the Survivorship Program strategic plan, I was hired as a clinical nurse specialist to lead the development of a program to address this problem. It was a good match between my desire for a new career focus and their need to improve care in this area. I didn’t know much about fertility at the time.

How did you get yourself up to speed on fertility issues?
JFK: I took 6 months to begin to educate myself, although this is an ongoing process. I read everything I could find on the topic, and I met with experts in the field of reproductive medicine to learn what they could offer our patients. I also reached out to patient advocates, particularly Lindsay Beck, the founder of Fertile Hope, the first nonprofit advocacy program to address fertility in cancer patients. This community of experts was very generous in sharing their knowledge and helping me network with others in the field.

To learn more about practice at MSK, I gathered baseline data to identify barriers for our clinicians in discussing fertility with their patients. Although there was a wide range of responses, barriers for many included not being aware of all the options to preserve fertility or of where they could refer patients, lack of time for in-depth patient discussions, and discomfort about opening a discussion of fertility. I also gathered baseline data from patients about their satisfaction with information received related to fertil­ity, which confirmed the need to improve how we address fertility risk and preservation options.

What else did you need to do to launch the fertility program?
JFK: I formalized the relationships with certain reproductive specialists and centers to ensure we had a systematic process for referrals, and I wrote patient education materials for clinicians to give to patients to facilitate discussing fertility. I also provided education in-service programs for physicians and nurses, and provide these on an ongoing basis. In addition, I created an intranet site that clinicians could access as needed, with numerous resources to help them discuss fertility with their patients.

What is the bulk of your practice at MSK?
JFK: I provide education and counseling to patients referred to me by MSK clinicians. About two-thirds of the patients I counsel are at diagnosis and one-third are posttreatment. With the first group, I focus on describing options for fertility preservation before treatment, particularly freezing eggs, embryos, or sperm. There are more females than males in this group, because sperm banking is more widely understood than embryo and egg freezing, and the process is more matter of fact, so it’s easier for clinicians to discuss with their patients. The second group is a bit more complicated, and is usually evenly divided between females and males. These people may have been rendered infertile by treatment and want to know all their options for building a family. This can include donor sperm or eggs, adoptions, and surrogacy.

How many patients use your services?
JFK: The number has grown exponentially. The first year I saw 71 patients. Last year, the fifth year of the program, I saw 376 patients.

Are there new options for fertility preservation?
JFK: Egg freezing is no longer considered experimental and is now accepted as a standard option for fertility preservation, according to the American Society for Reproductive Medicine and the American Society of Clinical Oncology. This is a new and exciting option for young women, and they need to know about it. Not only should it be offered for fertility preservation before treatment, but egg freezing should also be discussed as an option after treatment in teens and young adults who are at risk for premature menopause but not yet ready to start a family.

What is challenging about your job?
JFK: One of the biggest challenges is the financial constraints. Most fertility preservation options are not covered by health insurance. I can provide information about options and make referrals, but many patients cannot afford to pay for these services out of pocket. Even with discounts, the cost is prohibitive for procedures such as egg or embryo freezing and surrogacy.

Have you followed your patients to quantify pregnancy and live birth outcomes?
JFK: That is also a challenge. Because patients receive their reproductive healthcare outside of our cancer center, I have no way to access the ultimate outcomes of the referrals I make. In addition, there is no national database or registry tracking reproductive health outcomes of cancer survivors in the United States.

What would you like to accomplish in the future?
JFK: I am trying to incorporate the lessons learned from our experience at MSK to identify strategies other organizations can use to improve practice in the area of cancer and fertility. There is no one right way to set up a program. Institutions have different cultures and different resources. Many are smaller than MSK, and they may vary in how centralized they are. I am hoping to determine how best to implement the core elements of a cancer and fertility program that ensures widespread improvement in clinical practice, sustained over time.