Fertility sparing procedures which were once infrequent and under utilized, are now more commonly performed in young men and women facing a cancer diagnosis. A recent article in the February issue of the American College of Surgeons Bulletin, entitled Gynecologic Oncology Surgeons Spare Patients’ Fertility, Enhance Quality of Life,” by Jeannie Glickson discusses some of the technological advances in gynecologic oncology which have produced more favorable outcomes for young people facing a cancer diagnosis and fertility loss. Glickson talks to several heavy hitters in fertility preservation care, including Kristin Smith, Fertility Preservation Patient Navigator, and Oncofertility Consortium member Dr. Julian Schink, who maintain that it takes a multidisciplinary approach and team effort to treat young cancer patients.

One of the many things that Northwestern University is known for is pioneering collaborative fertility preservation care, oncofertility, at a time when many other institutions were treating fertility loss as a side effect of cancer treatment. According to Dr. Schink, “You need an oncologist who believes that the patients’ survival is the first priority, and you need a fertility team that respects some cancer patients’ desires to have children. You need strong players on both sides.” Specifically for these reasons, the Oncofertility Consortium was established – to respond to an urgent need for comprehensive fertility preservation care, incorporating clinicians, researchers and social scientists, all committed to ensuring that patients understand and can utilize fertility sparing technology.

Currently, patients interested in preserving their fertility may have some options that coincide with their cancer care, but other techniques not yet available to patients are being researched at the Oncofertility Consortium for potential future use. One of these techniques, a process called in vitro maturation, is performed by harvesting immature eggs from ovarian tissue strips which are cultured outside of the mother’s womb, treated with hormones until they mature and then fertilized with sperm to create an embryo. This would be particularly useful to patients who are not candidates for ovarian tissue transplantation such as leukemia patients or those with ovarian cancer.

As a result of the efforts of the Oncofertility Consortium and its members, patients can now receive comprehensive fertility preservation care at several sites across the country and internationally. At Northwestern, there has been a slight decline in the demand for fertility preservation services because patients no longer need to travel to Chicago for their treatment – they can find an institution, with the help of our Fertility Preservation Patient Navigator, in their own areas and according to Dr. Schink, “that’s a good thing.”

To read more about Northwestern’s pioneering efforts in oncofertility in Gynecologic Oncology Surgeons Spare Patients’ Fertility, Enhance Quality of Life, please click here.

Laxmi Kondapalli being interviewed by Dayle Cedars from Channel 7 news in Denver

One of the many, if not one of the most, important aims of the Oncofertility Consortium and its emphasis on fertility preservation research and clinical care, is “training the next generation.” Not only is the mission of the Consortium to improve fertility outcomes for patients undergoing cancer treatment, but it is also to ensure that future basic scientists and clinicians continue to expand current knowledge, research, clinical practice, and training in fertility preservation outcomes.  Laxmi Kondapalli, MD, MSCE, Assistant Professor of Obstetrics and Gynecology at the University of Colorado and Women’s Reproductive Health Research Scholar in the Division of Reproductive Endocrinology and Infertility is a realization of this goal. Let’s start at the beginning…

In March 2006, Laxmi was finishing up her residency training at Northwestern University in Obstetrics and Gynecology when she met Teresa K Woodruff, PhD, Director of the Oncofertility Consortium. Laxmi shared her interest in Reproductive Endocrinology (REI) with Dr. Woodruff, but expressed her desire to do basic science/bench research first, before embarking on clinical training and practice. According to Laxmi, “Meeting Dr. Woodruff changed the trajectory of my career.  She has incredible vision, particularly for someone who is not a clinician, on how to bridge science with individual care.”

Shortly after her meeting with Dr. Woodruff, Laxmi started working in the Woodruff Lab in August 2006. It was at the start of her tenure in the lab when she found out that Dr. Woodruff was one of the finalists for the prestigious National Institutes of Health (NIH) Roadmap Grant (aka, the grant that brought the “idea” of the Oncofertility Consortium to fruition). Together, they put the 1,000 page grant together over a 10 week period with help from members of the Woodruff Lab and other academics from within Northwestern and around the country. Laxmi explains, “It was being at the right place at the right time and the Oncofertility Consortium was a perfect fit for me because of my interest in REI and because it was a way for me to really see how you can translate work that we do in the laboratory to really impact clinical and patient care.”

In 2007, the Oncofertility Consortium was funded by the NIH, and Laxmi was A) not only a first-time grant writer, but a grant writer for one of the biggest grants given out (“for me, it was a valuable experience on so many levels”), B) processing and freezing A LOT of ovarian tissue in her lab work and C) navigating patients with the Fertility Preservation Patient Navigator who was receiving referrals from all over the country to do tissue freezing. By 2008, after two years in the Woodruff Lab working hands on with tissue, Laxmi was ready to embark on an REI fellowship and she had her sights set on an institution that would allow her to expand her work in fertility preservation while ideally being involved with the Oncofertility Consortium.

Stay tuned for Part 2 of the amazing, fabulous Laxmi Kondapalli success story!

By Francesca Duncan

Most cancer therapies, while life-preserving, can threaten the future fertility of both males and females.  Fortunately, the menu of fertility preservation options is broad, and due to ongoing research efforts through the Oncofertility Consortium and around the globe, these options are ever-expanding.  Hydrogel-based in vitro follicle growth is one such investigational technology developed by Oncofertility Consortium researchers in which immature follicles are isolated directly from ovarian tissue and grown in alginate, a natural biomaterial derived from algae.  This system supports follicular architecture through terminal stages of follicle development and has been shown in the mouse to produce eggs that give rise to healthy offspring.  Research is now focused on optimizing this system to produce live offspring in primate species.

As interest in learning and applying such technologies to the field of fertility preservation has increased, the Oncofertility Consortium launched a new course entitled: Oncofertility 101: a training course in in vitro follicle growth using alginate hydrogels.”  This is an intense one-day course in which participants experience  hands-on laboratory exercises aimed at learning the fundamentals of follicle micromanipulation, encapsulation, culture, and quality analysis.  This course “ensures that the transmission of technical skills needed to successfully grow healthy follicles in three dimensions are acquired quickly in order to advance the pace of reproductive research” emphasizes Teresa Woodruff, PhD, Director of the Oncofertility Consortium.  In addition to the laboratory exercises, Lonnie Shea, PhD and Min Xu, MD, PhD, both pioneers of this technology, present crucial insight into the evolution of follicle culture biomaterials and the ins and outs of setting up a follicle culture laboratory, respectively.  The course is led by Francesca Duncan, PhD, a Research Associate in the Woodruff Laboratory.

The first Oncofertility 101 course, held in September 2011, was very successful.  Participants came from diverse scientific backgrounds, including basic science, embryology, endocrinology, and biotech.  Participants found the course to be “excellent” and “a great opportunity.”  One person commented: “To really understand a technology I think you need to know how it is done so while I had read considerably about the technique, until yesterday, I did not have that important insight that goes with actually doing the technology… thank you for your time and effort and especially for your patience. It’s been twenty years since I actually sat at the bench and manipulated gametes!”

Oncofertility 101 is held twice a year, and the next course is right around the corner on Monday, March 12^th.  This course is free of charge but registration is limited to five participants.  If you are interested in registering or would like more information, please click here.  The second 2012 Oncofertility 101 course will take place on Wednesday, September 26^th, to coincide with the 2012 Oncofertility Consortium Conference.

At the Oncofertility Consortium, we are always trying to make sure that we have the most up-to-date and accessible information regarding fertility preservation, particularly for patients. Whether we are partnering with advocacy groups to let patients know about support services available to them or we are sharing the latest research being done in fertility preservation, we want to make sure that we reach as many people as we can. One way that we work to do this is by making sure fertility preservation information shared on our partner websites is accessible to non-English speakers.

Currently, both of our sister sites, www.SaveMyFertility.org and www.MyOncofertility.org, have Spanish translations. Spanish seemed like the logical next step to creating a larger readership and expanding our reach within the oncofertility and patient community. Now we’re on to phase 2: Italian via Dormant Buds Association and website!!

Dormant Buds is an association founded based on the ideas of a gynecologist who works at a public hospital and specializes in fertility.  After contact with dozens of patients who, because of aggressive therapies, lost their ability to have children, the doctor, along with the help of a group of volunteers, designed a reference website, www.gemmedormienti.it. In the Section “Domande,” are Italian translations of the MyOncofertility.org animations. Take a look at this new website to see the latest translation!

Are you a cancer survivor? Help oncofertility researchers study and prevent treatment-induced fertility loss by joining the FIRST online fertility registry for cancer survivors!

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 20^th 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.

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. 

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.

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).

More than 80% of female cancer patients survive for at least five years after their diagnosis and many live for decades beyond treatment. However, chemotherapy or pelvic radiation can deplete the eggs within a woman’s ovaries and the young women may survive with partial or complete loss of fertility that has ramifications for the rest of their lives.

Researchers at the Oncofertility Consortium work to preserve the fertility of these women, in part, by advancing cryopreservation, or freezing, techniques of eggs, embryos, and ovarian tissue. Cryopreservation of ovarian tissue is further important as it is an important step in developing new fertility preservation techniques, such as in vitro follicle maturation (IVM). IVM is an emerging technique which involves ovarian tissue banking and the later isolation of immature eggs, called follicles, and growth in a laboratory setting. The egg from the fully grown follicle can then be extracted and fertilized with partner or donor sperm and will prove to be a valuable technique for young cancer patients.

The two primary methods for cryopreservation are slow-freezing and vitrification, a fast freezing method. Both of these techniques reduce the formation of ice crystals that may damage tissues during the thawing process. Vitrification, which comes from the Latin term for “glass” is a newer technique that has gained popularity in recent years. A recent article by  scientists at Oregon National Primate Research Center, Alison Ting, Richard Yeoman, Maralee Lawson, and Mary Zelinski, compared these two freezing techniques in ovarian tissue from rhesus monkeys.

The publication entitled, “In vitro development of secondary follicles from cryopreserved rhesus macaque ovarian tissue after slow-rate freeze or vitrification,” found that the vitrification technique proved better at maintaining the structure of ovarian follicles (immature eggs) than slow freezing. For the first time in rhesus tissue, follicles from vitrified ovarian tissue were also able survive and grow in a laboratory setting. These follicles expressed markers of cellular proliferation, called phosphohistone H3 (PPH3) and bromodeoxyuridine (BrdU), and produced steroid hormones, indicating that these follicles maintained some functionality.

It is also important to note that follicles from vitrified tissues still had diminished function compared with fresh tissue. Further research will continue to advance technologies, such as cryopreservation, to make in vitro follicle maturation a reality for young cancer patients wishing to preserve their fertility. Some of this research will be discussed at CRYO 2011, the annual meeting for the Society for Cryobiology from July 24^th to the 27^th, 2011 in Corvallis, OR. Read the full article from the journal Human Reproduction.

In March, we blogged about a survivorship event scheduled for April 7^th at the Museum of Science and Industry entitled A Night at the Museum: An Evening for Young Adults Touched by Cancer and we’re back to report what an outstanding success it was! The event targeted cancer survivors between the ages of 21-39 specifically to focus on the unique challenges this demographic of survivors face.  Over 250 young adult cancer survivors, caregivers, family, friends and others touched by cancer attended the landmark event and the response from the cancer community has been overwhelming.

According to Jorie Rosen, Manager of Community Relations at the Robert H. Lurie Comprehensive Cancer Center and one of the organizers of this event, “attendees learned about advocacy programs and support services to help them proactively manage their physical and emotional health.” The purpose of the event was to teach young adult cancer survivors how to be their own advocates, and to let them know that they are not alone – there is a network of support that is designed to meet their needs. Survivors were able to have a cocktail, participate in a panel discussion with both providers and fellow survivors, and take a private tour of the You! The Experience Exhibit.

As survivors navigated the exhibit, providers and advocates were stationed along the way fielding any and all questions the attendees had.  Oncofertility Consortium Patient Navigator, Kristin Smith was on hand to discuss fertility preservation options and resources, which proved to be a hot topic among young survivors. Attendees expressed that they wanted to learn more about fertility and cancer, specifically long-term fertility concerns post cancer. Individuals seeking more information about fertility preservation can also visit SaveMyFertility.org, where they can find the resources they need to take control of their reproductive future.

Thanks to the hard work of the cancer care community, A Night at the Museum: An Evening for Young Adults Touched by Cancer was a huge success.  We were able to connect individuals affected by cancer with survivorship resources and more importantly, with each other. On June 23^rd at 6:30pm, young adult survivors will get another opportunity to make connections at the Stupid Cancer Survivorship Bootcamp at Sub 51 in Chicago, IL hosted by I’m Too Young for This, the Oncofertility Consortium and Imerman Angels. Come join us and help the young adult cancer community get educated, organized, mobilized and empowered!