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Feature:
Oncofertility: A Revolution in Childbearing

Oncofertility: A New Medical Specialty Helping Young Cancer Patients Have Children

Alan E. Guttmacher, MD, director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD).
Photo courtesy of: NICHD

"Oncofertility" is a new term that addresses an old problem: the fertility needs of young cancer patients. The word itself was coined through NIH-sponsored research.

Dr. Teresa Woodruff (far right) directs the Oncofertility Consortium, based at the Feinberg School of Medicine at Northwestern University. With her are some of the Consortium's cancer survivor members.
Photo courtesy of: Dr. Teresa Woodruff

Ten years ago, the idea of having children after cancer would not have been thought of at all. Today, due to the impressive rise in cancer survivors, this is an issue that women increasingly want addressed.

The ability to easily preserve male sperm prior to cancer treatment has provided hope at the time of diagnosis and families later in life.

However, women and girls faced with a cancer diagnosis have lacked the fertility preservation options that men were given. Loss of ovarian function in young women can cause several secondary health problems, including increased risk for cardiovascular disease and osteoporosis.

But beyond the physical challenges, loss of ovarian functioning can alter a woman's confidence in relationships, her ability to reach desired family and financial plans, and may even alter her feelings of femininity and sense of self.

Today, there is a globally connected network of specialists ready to manage the specific needs of young cancer patients. This Oncofertility Consortium National Physicians Cooperative shares data and best practices and ensures patients are provided rapid information, the most up-to-date options, and treatment plans that are coordinated with cancer care.

"For certain cancers, treatments have become so successful that survivors can now focus on life after cancer," says Alan E. Guttmacher, MD, director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). "And for many, the ability to have biological children is a major quality of life issue. NICHD has played a significant role in advancing the field of fertility preservation by supporting research on new technologies, which have helped increase survivors' likelihood of having biological children."

Now, thousands of women have been provided fertility options, and babies have been born to healthy mothers who have fought cancer and now face a future that includes family.

Established through an Interdisciplinary Roadmap Grant from the NIH, the Oncofertility Consortium represents a group of oncologists, reproductive endocrinologists, and scientists, bioengineers, bioethicists, allied health professions, and many others developing new strategies for fertility preservation for female cancer survivors (http://oncofertility.northwestern.edu).

"Researchers are making terrific progress in fine-tuning reproductive technologies that will give patients more options," says Charisee Lamar, PhD, director of the fertility research programs at the NICHD. "This research will improve the lives not only of cancer survivors, but also of others who experience infertility due to certain genetic factors, as well as other chronic illnesses."

To offer hope of fertility to women with cancer and other sterilizing conditions, the Consortium helps patients address an array of complex issues.

Among these challenges, young women with cancer have not reached their peak economic status. The higher-than-normal hospitalizations, follow-up visits, and inability to be insured have great consequences on decision-making and quality of life concerns.

"… I knew in my bones that something was wrong…"
—Colleen Cira, cancer survivor & mom

When I was 15 years old and first diagnosed with Hodgkin's lymphoma, I was nowhere near thinking about being a parent. Despite that, I vividly remember being told by my oncologist that having chemotherapy and radiation may make it difficult to have children, and I wouldn't know if that were true or not until I started trying.

While I don't remember having a significant emotional reaction to that information at the time, I know that when I approached my decision to have children with my husband just three years ago, I carried with me a tremendous amount of skepticism about my ability to bear children because I am a cancer survivor. Today, I have the most adorable, curious, and sweetest little 19-month-old I could ever dream of. But he didn't come easy.

Just a few months into "trying" with no results, I knew in my bones that something was wrong and that the standard "wait a year" advice was not going to fly for me because of my history. Thank God for the Survivors Taking Action & Responsibility (STAR) program at Northwestern University, because they immediately put me in touch with Kristin Smith at Northwestern University's Oncofertility Clinic.

Within a matter of weeks, I learned that chemo and/or radiation had killed off practically all of my eggs; I was almost 100 percent infertile. As a result, the typical first-line fertility treatments were not going to work for me. My treatment team told me that we immediately needed to start preparing for intrauterine insemination (IUI) because if IUI was not successful, they wanted to start in vitro fertilizatiion (IVF) immediately—they didn't know how big the window was between 97-to-100 percent infertile.

In a matter of a month, I began taking medication, giving myself two shots every day and going to the infertility clinic constantly. To complicate the picture, the insurance that my husband and I had did not cover the treatments or procedures. It was an exhausting time for my husband and myself, physically, emotionally, and financially. I was terrified about the possibility of the treatments not working…about not ever having the opportunity to be someone's biological mom. What I feel so incredibly lucky to say is that there is a happy ending. After one IUI attempt, I became pregnant with Lincoln.

A small part of me feels silly even writing this because now I know so many people who have struggled to have children. People who try for years, who cannot identify the cause for their infertility, who try procedure after procedure with no results. It is with this perspective that I feel so incredibly blessed to have the luck we did with IUI and the beautiful baby boy it allowed us to create.

Find out more at: http://blog.oncofertility.northwestern.edu

Even if a risk factor for infertility can be assessed:

  • How does the patient, or indeed the parent of a small child, make sense of that information?
  • How do they navigate the ethical and legal issues surrounding consent and assent?
  • How do patients, families, and healthcare staff come together and make a treatment decision?
  • What are the long-term consequences of infertility for young women diagnosed with cancer?

Indeed, when we asked adult survivors of childhood cancer and their parents about fertility, they told us,"… it was very upsetting when I was told at the onset of treatment that … my ability to conceive may or may not be affected. So, even at 15 I was still very upset about that …"; "I didn't want to continue with treatment after they told me that I had ovarian failure. You know it was … it was very traumatic."

The NIH-supported research, clinical networks and patient decision aids created this new field of oncofertility and a new way to think about science—from bench to bedside to babies.

Fall 2014 Issue: Volume 9 Number 3 Page 17-18