Introducing the FIRST Fertility Registry for Cancer Survivors

One out of 48 women will develop invasive cancer before age 40. Many young women will survive their cancer treatment and live long lives that include decisions on building a family.   Currently, there is a lack of data on the long-term reproductive outcomes in young women after cancer treatment. Investigators at the Oncofertility Consortium recently launched the first long-term study to investigate the reproductive impact of cancer treatments on women. The Fertility Information Research Study (FIRST) is a registry project that will collect this information from and for female cancer survivors.

We are happy to announce that women who want to participate in science and help the next generation of cancer patients can now be a part of this study. Any woman between 18 and 44 who is less than three years from a cancer diagnosis or treatment can sign up for the study. Interested women can call the FERTLINE (866-708-FERT [3378]) or contact the study team by email ( to learn more about the study.

Participants will be asked to complete an online questionnaire yearly that will assess a variety of women’s health outcomes, from fertility to abnormal periods to premature menopause. This information will help researchers learn the scope of reproductive problems after cancer with just a few minutes of effort each year.

If you are a young woman who has had cancer or cancer treatment, or know women who are, please think about signing up for the FIRST Registry by calling the FERTLINE at 866-708-FERT (3378) or contacting the study team at  With your help, we can help guide counseling and treatment of future young women.

2011 Oncofertility Consortium Conference: High School Students Attend First Scientific Meeting

The 2011 Oncofertility Consortium Conference incorporated many new activities and attendees. One new special group of attendees were high school students from the Oncofertility Saturday Academy, the informal science outreach program run by the investigators of the Oncofertility Consortium around the country. A new scientists in the group, Katy Ebbert had the chance to spend some time with these young ladies and told us about her experiences with them.


Photo by Galdones Photography

Photo by Galdones Photography

By Katy Ebbert—As an offshoot of the Oncofertility Consortium Conference that took place October 12-14th in Chicago, high-school students from Chicago, Philadelphia, and San Diego convened to learn about the field of fertility preservation and to explore the possibilities of pursuing an education in the sciences. These young women are all students of the Oncofertility Saturday Academy, the education outreach program of the consortium. The students not only attended most of the consortium’s presentations, but they also displayed their own posters and answered questions about the research with which they had been personally involved. Over the course of the three days the girls were exposed to the progress made by the researchers of the consortium, as well as they were given a glimpse into anticipated research and future projects.

Having recently received my bachelor’s degree from Northwestern University, I accompanied the girls on their trip to Northwestern’s Evanston Campus where they attended an info session and participated in a tour of the campus. Interested students were also given a quick showing of Dr. Tom O’Halloran’s laboratory in the new Silverman building on the northern end of campus. A whirlwind experience, the girls were greeted by the lively environment provided by the giant purple-shirted crowds from undergraduate orientation and were given an overview of the scientific community present at the university.

Personally, I found the girls themselves to be the most impressive part of the experience. These young women were attentive, well-spoken, and clearly driven to achieve. Eager to have their questions answered, the girls pressed the staff at the Office of Administration with questions pertaining to courses available in each school, application requirements, and many expressed a particular interest in the seven-year Honors Program in Medical Education series (a 7 year program which offers direct entry into Northwestern’s medical school). To put it simply, they kept their tour guides very busy.  It became immediately clear to me that these girls had long-term goals in mind while attending the Oncofertility Consortium Conference. They were passionate about science already at their young age, and they seemed both excited and committed to the idea of exploring all options available to them as they approached the next chapter in their education. Overall, it was a wonderful trip, and I have no doubt that either at Northwestern University or elsewhere, these young women are prepared to excel.


Penn Med Student Perspective on Oncofertility

Last week, the 2011 Oncofertility Consortium Conference: Priorities for Sustainable Oncofertility Research and Patient Care, was held here in Chicago. One of the more than 150 attendees was a University of Pennsylvania medical school student, Katie Dillon, who works with Clarisa Gracia, MD, MSCE on oncofertility clinical research. She wrote an article for Making the Rounds, a blog from the Perelman School of Medicine at the University of Pennsylvania, which we are posting here.


By Katie Dillon

A Trip to Chi-town for Science!

This past week I traveled to Chicago for the Oncofertility Consortium, an annual conference held at Northwestern to discuss advances in the field of fertility preservation for cancer patients. As mentioned in my previous post, I am currently taking a year out from medical school to conduct clinical research in infertility, my field of interest. Oncofertility is an area in which my mentor, Dr. Clarisa Gracia, specializes.

Dr. Christos Coutifaris, Katie Dillon, and Dr. Clarisa Gracia

The field looks at cancer treatments like chemotherapy and radiation that are toxic to the reproductive organs. For a long time these effects have been a medical afterthought, as the focus on survival after cancer diagnosis took precedent over other health concerns. But as improved cancer therapies result in better prognoses, it is necessary to consider the side effects associated with treatment. Specifically it is important to think about fertility preservation before cancer treatment begins so that patients may have options down the road for building families…Read more about Katie Dillon’s trip to the 2011 Oncofertility Consortium Conference.


View a new documentary about the Oncofertility Consortium‘s first five years, A Roadmap for the Future: Inquiry, Discourse, and Innovation in the Oncofertility Consortium, which was first premiered at the Oncofertility Gala last Monday evening.

Tomorrow: Join Us Virtually for the 2011 Oncofertility Consortium Conference

The past few weeks have been busy ones here at the Oncofertility Consortium. We have been in the midst of preparing for the fifth annual conference to investigate advances in cancer and fertility, which begins tomorrow morning (Monday, September 12th, 2011). It is hard to believe that it has already been five years since this interdisciplinary group of people came together and to celebrate, we are putting on a great event with more than 150 registered attendees and many more virtual participants.

The conference begins tomorrow at 8:30 am (CST) with an introduction by Teresa K. Woodruff, PhD and followed by presentations on fertility preservation in the non-human primate, oncofertility resources at cancer centers, advances in cryropreservation, humanist and social science perspectives on cancer and fertility, and many more. Monday’s virtual events will conclude with a keynote address by Laurie Zoloth, PhD on “Ethical Questions after Five Years of Oncofertility Research.”

Tuesday will include discussions on human follicle culture, a panel discussion on insurance coverage for fertility preservation, case studies in oncofertility, and a series of discussions on education for high school students and clinicians. Throughout both days, attendees will have the chance to participate in breakout discussions on the future of different aspects of oncofertility from Basic Science to Information Technology. At noon (CST) on Tuesday, leaders from each session will address the larger group to discuss the future goals for the groups.

These cumulative events will not only allow members of the Oncofertility Consortium to reflect on the great strides of the group over the past years but it will set the stage for the next five. We hope you can join us there or follow us on Twitter (#oncofert11).


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Upcoming Cancer Rights Conference: Washington DC

In June this past summer, the Oncofertility Consortium partnered up with the Cancer Legal Resource Center (CLRC) for a one-day conference event kicking off their 2011 Cancer Rights Conference series. It was a great success and provided many attendees with valuable information regarding cancer-related legal and financial issues. One attendee at the conference said: “This program was awesome. Everything presented was valuable information. As a cancer survivor it is comforting to know there is someone out there looking out for us. Thank you so much CLRC for all you do. You make a difference in our lives!”

On September 23rd, the 2nd CLRC Conference is being held in Washington DC and there is still time to sign up for this informative and FREE event. The conference will provide patients, survivors, caregivers, advocates, navigators, health care professionals, and attorneys with valuable information about cancer-related legal issues, including: employment & taking time off work, health, disability and life insurance options, access to health care, insurance navigation and appeals, understanding health care reform, cancer community resources, genetics and the law, legislative advocacy, fertility preservation and education rights of children and young adults with cancer. Members of CLRC’s professional network are comprised of attorneys, insurance agents, and accountants able to answer a variety of legal concerns.

FREE CLEs will be offered to eligible attorneys in attendance and CEUs will be offered to social workers and nurses. Please visit to register and/or for more information. The 2012 locations will be Los Angeles, Chicago, Houston, and Boston.  Dates and exact agendas have not been determined thus far, but you can visit CLRC’s website to register or find more information.

If for some reason you are unable to attend this conference, but need to speak with a legal professional regarding a cancer-related legal issue, CLRC provides a toll-free telephone assistance line (866-THE-CLRC). Callers can receive free and confidential information about relevant laws and resources for their particular situation.

Fertility Preservation and Motherhood

Motherhood has long been viewed as a valued role for women, regardless of whether or not every woman is a mother or plans on being one. In all fairness, it is a defining role for many women and something that gives their lives added meaning. I can certainly understand how this could be a principle role in one’s life – I feel as though motherhood, among other things, gives my life purpose and a completeness stemming from conceiving, carrying and raising a child.

Historically, women who did not have children were viewed as unfortunate (I am referring primarily to middle class, white women). Their primary role was in the home and children were a large part of “keeping a home.” Before women entered the paid workforce, their primary job was to have and care for children. As you can imagine, women who for whatever reason were unable to bear children, suffered socially and emotionally as a result of their infertility. The idea of being complete, of being a whole woman was challenged by their childless identity.

In a new article by Sarah Rodriguez, PhD and Lisa Campo-Engelstein, PhD, entitled, “Conceiving Wholeness: Women, Motherhood, and Ovarian Transplantation, 1902 and 2004,” they explore the idea of wholeness experienced though organ transplantation, specifically ovarian tissue transplantation in infertile women.  Women began requesting medical interventions for infertility as early as the beginning of the 20th century suggesting the “cultural resonance of pregnancy and motherhood.”  As surgical interventions to correct infertility grew in popularity, infertility was no longer seen as a “personal misfortune… [but instead] a medically treatable condition.”

In their article, Rodriguez and Campo-Engelstein argue that ovarian tissue transplantation can serve, through the act of biological reproduction, to render women whole, meaning to conceive and carry a pregnancy naturally. By utilizing case studies that span over a century, they show that the idea of wholeness embodied in biological motherhood still permeates women’s identities thus, organ transplantation that restores fertility in women helps facilitate this idea of completeness.

To learn more about this and the history of ovarian transplantation, please read “Conceiving Wholeness: Women, Motherhood, and Ovarian Transplantation, 1902 and 2004,” by Sarah Rodriguez and Lisa Campo-Engelstein. You can also find their research on fertility in, Oncofertility: Ethical, Legal, Social, and Medical Perspectives.

Fertility Preservation: Childless by Choice

We hope that all patients of reproductive age who are diagnosed with cancer have the opportunity to discuss oncofertility with their provider shortly after diagnosis. This conversation should include the options, risks, benefits and various outcomes of available fertility preservation techniques. Oncofertility decisions can have a big impact on a cancer patients life, both in the moment and as they move forward through treatment, recovery and remission.

One aspect of oncofertility decision-making that needs to be explored is the impact the actual conversation can have on a newly diagnosed cancer patient. This discussion may have a significant effect on patients who were previously ambivalent or not interested in having biological children.  What was not an issue in this individual’s life prior to their diagnosis may now become something with which they struggle.  It’s true that not everyone plans to have children and what you may feel in your mid-20s could certainly change as you age and your life circumstances change. Nonetheless, men and women often make a conscious decision not to have children.

Discussing fertility preservation may lead a cancer patient to struggle with a decision that was already made prior to their diagnosis because they feel it should be important to them.  A cancer patient’s journey is complex and although fertility preservation options provide so much hope and joy to some, it can be a mixed blessing for others.  According to Leonard Sender, MD in “Reading Between the Lines of Cancer and Fertility: A Providers Story,” “having children is no longer a default expectation of becoming an adult, or even of getting married.” Thus, a provider shouldn’t assume that just because a patient can have children, doesn’t necessarily mean they want to.

For a newly diagnosed cancer patient, all the decisions they make will have a big influence on their lives from the point of diagnosis onward.  It’s important for providers to consider that not all patients want fertility preservation and that these decisions may have been weighed and assessed long before the cancer diagnosis, not because the patient is focused on other aspects of their treatment. To read more about this, including a case study of a cancer patient who chose not to pursue fertility preservation, please read “Reading Between the Lines of Cancer and Fertility: A Providers Story,” by Leonard Sender, MD in Oncofertility: Ethical, Legal, Social and Medical Perspectives


Some Thoughts on Judaism and Fertility after Cancer

Religion and oncofertility strive to maintain an open and mutually beneficial dialogue in order to meet somewhere in the middle.  Oddly enough, science and theology often overlap, albeit outside of the lab, so it’s important to bridge any gaps that may exist in the current debate surrounding reproductive technology and certain faiths.  The benefits that fertility preserving techniques can have on the quality of life of a cancer patient needs to align with their religious beliefs if that proves to be an issue in their decision-making process.

One of the many religions that are open to the relationship between science and faith is Judaism. Judaism, specifically Orthodox Judaism, has many different movements that adhere to common principles.  One key feature that these different movements share is their dedication to both the written and the oral Torah. The Torah refers to the first 5 books of both the Jewish and Christian bible and Judaism teaches that the Torah is of divine origin and represents the word of G-d. (In this blog, we will practice the Jewish custom of spelling G-d as a measure of respect for the religion, which comes from the tradition of never spelling the Hebrew equivalent of the name).

The Torah contains 613 miztvot, or commandments, with the first stating to “be fruitful and multiply.”  One of the hallmarks of orthodoxy is that it encourages intellectual questioning in order to live morally and ethically in a way that G-d requires of his followers. Thus, one could presume that for an Orthodox Jew facing a cancer diagnosis, it is a religious obligation to preserve their fertility and their ability to bear children – that science and religion are not in fact in conflict, but working together to sustain G-d’s commandment, “be fruitful and multiply.”

According to Sherman Silber, MD, in “Judaism and Reproductive Technologies,” even the  “strictest orthodox Jewish theology maintains that the Torah is not in conflict with reproductive technologies…for cancer patients of reproductive age, Jewish law ultimately requires every effort to safeguard the possibility for future parenthood.” This even holds true in some cases of gamete donation, specifically ovarian tissue cryopreservation. In Judaism, religious leaders may not encourage egg or sperm donation because their use may be seen as breaking the marital bond; however, ovarian tissue donation is allowable because “the egg is being ovulated within the body of the intended mother.”

Many followers of Judaism agree that mankind needs to find it’s way to G-d through intellectual reasoning and mindful conflict resolution, in order to live their lives the way G-d intended. From that we can deduce that Judaism, although not aligned with all fertility preservation techniques, engages in an open and thoughtful dialogue with the science of oncofertility To learn more about Judaism’s relationship with reproductive technologies, please read Sherman Silber’s, “Judaism and Reproductive Technologies,” in Oncofertility: Ethical, Legal, Social, and Medical Perspectives.


Menopause vs. Infertility After Cancer: What’s the Difference?

Women and girls who undergo radiation and chemotherapy to treat cancer or other diseases are a significant risk of going into premature menopause and infertility. Menopause and infertility, while related, are not the same thing and it is important to understand the difference. Menopause is the stage in a woman’s life when her hormonal milieu changes, she stops having her period, and can no longer conceive. Thrusting young female survivors into early menopause puts them at increased risk for osteoperosis, heart disease, decreased sexual drive, and other conditions. In contrast, infertility can still occur in women who do have monthly periods and have premenopausal hormone levels. Research to develop new fertility preservation techniques measure menopause and infertility differently and it is important for the public to understand this as well.

An article recently came out in the Journal of the American Medical Association with data indicating that a drug may be able to prevent premature menopause in cancer patients. The drug, called a gonadotropin releasing hormone (GnRH) agonist, mimics a woman’s own GnRH and may put the woman’s ovaries into an inactive state. When taken during chemotherapy, the drug may protect the ovaries from some of the harmful effects of treatment, although the exact mechanism in preventing early menopause is unclear. The study, by Del Mastro, Boni, and Michelotti, examined resumption of periods after chemotherapy and the levels of follicular stimulating hormone (FSH) and estrodiol (a form of estrogen) after women took the drug. Women on the drug during chemotherapy were more likely to resume their periods and have premenopausal levels of FST and estrodiol than those who received chemotherapy alone.

While prevention of premature menopause is good news, many media outlets learned of the research and wrote articles on how the agonist may prevent infertility, not just menopause. Titles such as, “Breast Cancer Patients Prevent Infertility With New Treatment,” further misinformed the public. As many cancer survivors have experienced first hand, patients may regain normal periods but have reduced or complete loss of fertility. Only long-term studies of survivors who used GnRH agonists during chemotherapy, will we be able to determine whether this treatment also preserves fertility. In the meantime, cryopreservation of eggs, embryos, or ovarian tissue is still the best bet. We look forward to the results!

Ethical Implications of Investigational Fertility Preservation Research

The goal of oncofertility is to preserve the future fertility of cancer patients and ensure they have reproductive choice after they’ve finished treatment. Not all methods of fertility preservation are considered “established” techniques meaning they are viewed as experimental and must be offered under Institutional Review Board (IRB) protocols (an IRB is a committee that has been designated to approve, monitor, and review biomedical research involving humans in order to protect the rights and welfare of the research subjects).

Oocyte and ovarian tissue cryopreservation are two separate techniques that still need basic and clinical research before they can become established methods of fertility preservation. As a result, research participants are needed for the use of oocytes and ovarian tissue. This creates the question, “who is the most appropriate population to participate in investigational fertility preservation research?”

Populations who have participated in research or who have been suggested as good potential participants are: cancer patients, fertility patients, women who are already donating oocytes for reproduction and healthy research volunteers donating oocytes or ovarian tissue for the sole purpose of research.  Each group comes with their own ethical and theoretical challenges, but for the sake of time, we’ll focus specifically on cancer patients.

In the case of ovarian tissue cryopreservation, researchers rely primarily on cancer patients for ovarian tissue, allowing patients to donate up to 20% of their ovarian tissue for research purposes. According to Michelle McGowan, PhD, in “Participation in Investigational Fertility Preservation Research: A Feminist Research Ethics Approach,” there is a concern that cancer patients who participate in investigational fertility preservations studies “may raise the potential for false hope both for fertility preservation and for cancer treatment.” McGowan argues that even though cancer patients are in a position to benefit from the outcomes of the research, they are also the most vulnerable because they may not understand that a technique is still considered investigational.  This means that there is a possibility they may remain infertile after the procedure.

Nonetheless, while there are certain drawbacks associated with each potential research participant population, cancer patients are the most ideal candidates for research since they are the ones who will benefit from their outcomes the most.  Healthy research participants risk damaging their reproductive health by participating in investigational fertility preservation research whereas a cancer patient’s fertility is already at risk so participation may be the best option for preserving their future fertility.  To learn more about the ethical implications of participation in fertility preservation research, please read, “Participation in Investigational Fertility Preservation Research: A Feminist Research Ethics Approach,” by Michelle McGowan, PhD., in Oncofertility: Ethical, Legal, Social and Medical Perspectives. To learn about joining a research study involving ovarian tissue cryopreservation, contact the national FERTLINE at 866-708-FERT (3378).

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