In April, the Oncofertility Consortium hosted a Virtual Grand Rounds with Clarisa Gracia, MD, MSCE, entitled, “Case Studies in Oncofertility,” in which she discussed five theoretical young cancer patients and how oncofertility could be incorporated into their medical care. These patients included pediatric girls, adolescents, and young adult women with a variety of diseases including lymphoma, leukemia, ovarian, breast, and bone cancer. Dr. Gracia’s talk not only included the clinical recommendations for each of these patients, but also the scientific evidence that supported such suggestions. If you didn’t watch the live Rounds you can view a recording of the talk, with an option to obtain CMEs from the recording.  Following are some of the questions and answers posed to Dr. Gracia that she was able to answer after the Rounds ended.

Question: Are there differences in the impact of chemotherapeutics on primordial vs. growing follicles?

Answer: There is destruction of both growing follicles and primordial follicles. The article, “How do chemotherapeutic agents damage the ovary?” by Morgan, Anderson, Gourley, Wallace, and Spears provides a good review of some of the evidence. Briefly, chemotherapeutics may affect a variety of cell types within the ovary. A reduction in primordial follicles may be caused by direct damage by chemotherapeutics. However, chemotherapy also damages growing follicles, which increases recruitment of the primordial pool of follicles to begin growing. This increased recruitment also means that chemotherapy may indirectly decrease primordial follicle numbers.

Question: How do you build relationships with oncologist to ensure they are willing to start the fertility preservation discussion with patients?

Answer: It is important to reach out to oncologists and oncology nurses and let them know that you provide fertility preservation services for their patients. Provide flyers, letters, and make an effort to give presentations to oncology groups in your area. Please refer to the oncofertility website for more information.

Question: Are there functional analyses after uterine or whole body irradiation to determine if the uterus will be able to carry a healthy growing fetus to term?

Answer: The studies have focused only on uterine size and blood flow post radiation exposure, not functional in vitro studies.

Question: What do you/your patients consider a good number of oocytes? If a patient doesn’t get enough after one stimulation protocol, will you allow them to delay treatment in order to do another?

Answer: That is a difficult question and depends on a patient’s age and egg quality. We generally think getting more eggs is better than few eggs, but there is no guarantee of pregnancy even with many eggs. Ideally, a patient gets at least 10 oocytes in an egg retrieval. It is reasonable to pursue another stimulation cycle only if the oncologist feels comfortable delaying therapy.

Join the next Oncofertility Virtual Grand Rounds in June on the topics, “Sexuality After Cancer” with Dr. Kamaljeet Murthy and “Hormonal impact of cancer treatment and management of hormonal symptoms in female cancer survivors” with Dr. Catherine Stika.

Pediatric cancer, a disease once thought to be primarily incurable, now has an 80% cure rate as a result of clinical advances in technology, pharmaceuticals and screening. For many young patients and their families, survival takes precedence over all other issues immediately following a cancer diagnosis. As a result, late effects such as fertility loss, are often not addressed until remission or after fertility impacting cancer treatments have already begun. A new publication in the journal, Pediatrics, by Gwendolyn Quinn, Caprice Knapp, Devin Murphy, Kelly Sawczyn, and Leonard Sender entitled, “Congruence of Reproductive Concerns Among Adolescents with Cancer and Parents: Pilot Testing an Adapted Instrument,” the authors conducted a pilot study to test a 10-item reproductive concerns scale adapted for female adolescent cancer patients and their parents, to determine the congruence between parent and adolescent fertility cancers as a result of cancer diagnosis.

The authors hypothesized that adolescent patients would struggle to actualize long term cancer effects as a result of their young age and inexperience with parenthood; therefore, have fewer reproductive concerns than their parents. Parents on the other hand, would view their child’s fertility loss more negatively and dramatically due to their experience as parents. The authors also hypothesized that age would play a factor in the congruence of fertility concerns between parent and child with older adolescents sharing similar reproductive concerns with their parents.

In order to obtain accurate and unfiltered feedback from adolescents, they were interviewed in rooms separate from their parents. Findings showed that the majority of parents provided inaccurate predictions of their daughters’ responses regarding their reproductive concerns.  Overall, parents underestimated their child’s desire to have children of their own one day and expected that their children would be satisfied with survivorship.

As a result of this study, two key issues regarding adolescent reproductive concerns and parent perceptions were highlighted: 1) that creating and administering pediatric instruments must be done with pediatric patients for accuracy, without parental involvement which often inhibits free expression, and 2) parents often underestimated their daughters concern about future reproduction when impacted by a cancer diagnosis.  This study demonstrates that adolescents have strong reproductive concerns that are not being captured in current quality-of-life instruments and may be further neglected because of parents’ unawareness of their child’s concerns.  Thus, patient discussions regarding fertility concerns should be conducted before treatment begins, during and after.

Read: “Congruence of Reproductive Concerns Among Adolescents with Cancer and Parents: Pilot Testing an Adapted Instrument.”

Breast cancer is the number one cancer women are diagnosed with; however, the survival rate for young women diagnosed with cancer in its early stages has improved considerably over the last 20 years.  Today, many young women diagnosed with breast cancer can expect long-term survival, but premature menopause, infertility and psychosocial effects such as depression and anxiety may affect their quality of life. In a new article, Quality of Life, Fertility Concerns, and Behavioral Health Outcomes in Younger Breast Cancer Survivors: A Systematic Review, authors Jessica Howard-Anderson, Patricia A. Ganz, Julienne E. Bower and Annette L. Stanton, examine three key components of functioning that appear to be significant to young breast cancer survivors: quality of life (QOL) health issues, menopause and infertility, and behavioral health outcomes.

The authors conducted a literature review using 26 articles found in PubMed, specifically focusing on women under the age of 51, to determine QOL health issues with breast cancer survivors.  What they found was that young women’s QOL was compromised mentally and emotionally due to loss of fertility, weight gain, premature menopause, sexual function disorders and transition issues. Young breast cancer survivors reported a higher incidence of depression and anxiety than older breast cancer survivors, as a result of this QOL issues.

The authors go on to argue that the QOL health outcomes facing young breast cancer patients may be avoided if the cancer is treated not only based on the type of cancer, but by the age of the patient. They state that young breast cancer patients have different needs and therefore may warrant a different treatment regime.  “By tailoring adjuvant therapy regimes and giving cytotoxic therapy only to those who may benefit, we can mitigate some of these side effects, but the long life expectancy for these young women also provides a window of opportunity for cancer prevention and health promotion activities.”

Overall, what is needed for young breast cancer patients is an established measure for how to treat this demographic that takes into consideration their long life expectancy, including fertility and menopause awareness, as well as behavioral health outcomes.  More studies need to be conducted which evaluate patients pre and post cancer treatment to properly access their QOL before and after they were treated for cancer and potentially suffer any long-term side effects from their treatment. The Oncofertility Consortium provides information and guidance to oncologists, endocrinologists, and other health care providers concerned with expanding the reproductive options of cancer patients and survivors. To read Quality of Life, Fertility Concerns, and Behavioral Health Outcomes in Younger Breast Cancer Survivors: A Systematic Review, please click here.

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.

In the next few weeks, the University of Illinois at Chicago (UIC) will be hosting an exciting new Grand Rounds session with Oncofertility Consortium  member, Dr. Jennifer Hirshfeld-Cytron, as the guest speaker.  “Legal and Ethical Implications of Fertility Preservation: A Case Based Approach,” will take a closer look at the ethics behind oncofertility on February 8th from 12-1pm at UIC.

Dr. Hirshfeld-Cytron will begin by discussing the various fertility preservation options patients have based on their diagnosis and cancer treatment plan. She will also discuss how patient care is handled collaboratively in this burgeoning new field. Much of the success in a multidisciplinary field is based on communication and how effectively teams work together. The Oncofertility Consortium can be seen as a model for team science through its ability to bridge the gap between clinicians, researchers, and the social sciences.

Finally, Dr. Hirshfeld-Cytron will discuss current literature related to the clinical, legal, and ethical implications of fertility preservation strategies in breast cancer, ovarian germ cell cancer and pediatric patient populations.  Read Dr. Hirshfeld-Cytron’s recently published a paper with Drs. Gracia and Woodruff entitled, Nonmalignant Diseases and Treatments Associated with Primary Ovarian Failure: An Expanded Role for Fertility Preservation.  A panel discussion will follow with  clinicians and scholars  from obstetrics, gynecology, pediatrics, law, and hematology-oncology.  For more information or attend this Grand Rounds, contact L. Anderson-Shaw at 312.413.3805.  We hope to see you there!

A recent blog post in the academic journal, Nature, explores a new report by the Nuffield Council on Bioethics (an organization in England that examines and reports on ethical issues in biology and medicine), suggesting that women who donate their unfertilized eggs to research deserve to be compensated. Currently in the United Kingdom, direct compensation for egg donation to research or for infertility treatments is prohibited by law. In the US, while direct compensation for egg donation to infertile couples/individuals varies by state, the only state that is allowed to use public funding to purchase unfertilized eggs for research purposes is New York.

The report argues that since egg donors are not compensated, researchers must rely on altruistic egg donors, which are few and far between. In a letter written to the academic journal Cell Stem Cell, scientists Kevin Eggan and Douglas Melton from Massachusetts discuss the issues they ran into when trying to recruit egg donors for a study they did in 2006-2007. They spent $100,000 on advertising over a 2-year period and although they initially received over 200 respondents, once they found out they would not be compensated, all but one dropped out of the study. Eggan and Melton’s findings suggest that if direct compensation for unfertilized eggs were legalized, more women would participate in egg donation for research purposes.

Ethical concerns and objections have been raised regarding egg donation, one in particular – the exploitation of the poor and disenfranchised. Some scholars and ethicists argue that if egg donation were monetized, it would lead to the comodification of the vulnerable, particularly poor and college-aged women. If a price tag were put on eggs, might a woman discount the burdens of submitting to egg stimulation and retrieval in exchange for the chance to earn $5,000 to $10,000, the going rate for eggs used in infertility treatments?

The flip side to this argument is that labeling this practice exploitative is overprotective and paternalistic. Why should egg donors for research be required to be more altruistic than those giving their eggs for reproductive purposes? Why compensate one for their time, burden, expenses and risks, but not the other?  Also, it is argued that there is a greater social value in donating eggs for research than there is in donating eggs for infertility treatments. Although at the Oncofertility Consortium, our scientists do not do research on donated eggs, they do study donated human ovarian tissue which is essential for advancing clinical practice in fertility preservation.

There are a number of arguments that can be made (and have been) for or against compensatory egg donation, but the fact remains that researchers residing in areas that compensate egg donors have higher participatory rates for their studies. This suggests that with the proper protocols in the place (i.e., a national registry which tracks egg donors limiting the amount of times they can donate, proportional and modest payments to egg donors, etc…), compensating egg donors for research studies may yield higher participation rates.

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Recently there has been a lot of attention brought to the concept of collaboration in academia, specifically in the sciences. Gone are the days (at least in our niche) where disciplines drew a dividing line in the sand – scientists keep to one side of the room, humanities, you go play in the other corner, etc… We understand that there cannot be one without the other and the more we can begin to build a “common language,” the better off we will be as researchers, academics, students and all around everyday people.

One of the many areas that the Oncofertility Consortium has implemented a collaborative paradigm is in the Oncofertility Saturday Academies (OSA) held throughout the country. Young women in high school from diverse backgrounds are engaged in the basic sciences, the social sciences and the humanities. We open up our lab and say, “please come in, we’d like to show you what we’re doing and teach you how to be a better scientist too.”

Some areas we focus on in our Saturday Academy along with lab work are the ethical, social, legal and religious implications of oncofertility research. Dr. Laurie Zoloth, Oncofertility Consortium member and Professor of Medical Humanities and Bioethics at Northwestern University, has been a key component of the Ethics curriculum in OSA over the last 5 years.  According to Dr. Zoloth, “one of the most important things about doing research in reproductive health is thinking about the implications for human societies, human communities and the ethical implications that each individual faces.”

Dr. Zoloth and her students put together a 2-hour course for the young women, introducing them to basic definitions, theory and a case-based method of ethical decision-making in order to demonstrate the complicated and important questions that oncofertility raises. Dr. Zoloth says, “the attempt of our section is to broaden their understanding of the competing and sharply different moral arguments that attend to this research so that they know what the basic definitions, initial conversations, and arguments that have been made to objections raised from religion and moral philosophy are to this kind of research.”

At the Oncofertility Consortium, we believe that it is imperative that the future of science be a collaborative initiative and this is the basis through which we developed our national OSA program 5 years ago. According to Dr. Zoloth, “the complex decisions that are invoked by their [research] have to be apart of their science as well. So we teach [the girls] right along with the science, so they’ll understand how intertwined the work of a scientist is with the concerns of their society.”

Stay tuned for Part 2…

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The Oncofertility Consortium and the Hormone Foundation developed fact sheets for men, women, and children to learn about the impact of cancer on their fertility, hormonal management, and fertility options. These fact sheets are available at SaveMyFertility.org, a website which provides patients and providers with information about the reproductive health of cancer patients and survivors. They are offered for men, women, and children and come in both English and Spanish versions.

In an effort to evaluate the usefulness of the fertility preservation fact sheets, a new on-line survey is being conducted by Oncofertility Consortium members, Marla Clayman, PhD., and Sara Barnato, M.D., called,  “Evaluation by patients of the effectiveness of Fact Sheets developed to provide information on fertility preservation options and hormonal health after treatment.” They are evaluating the fact sheets in order to improve and expand upon them. All interested parties need to do is review a fact sheet in English or Spanish, and complete a short survey. Any cancer survivor age 18-44 may participate.

By participating in this new survey, survivors are not only helping themselves to better understand their cancer experiences but also potentially helping future patients. The more feedback oncofertility researchers receive, the better they are able to distinguish the impact these fact sheets have on cancer patients and survivors.

Interested survivors will be asked to read a Save My Fertility fact sheet, consent that they are between 18 and 44 years old, and complete a short survey. This short, on-line study makes it easy for cancer patients and survivors to help advance cancer research.  We are hopeful that we we’ll have at least 100 participants before the New Year, so please take the time to complete the survey before December 31^st!

Learn more about this new survey.

I’m excited to be writing about the second issue of the Journal of Adolescent and Young Adult Oncology (JAYAO) , the first cancer journal of it’s kind. This second issue is no small feat – many journals come and go and it takes a dedicated editorial staff and readership to keep the ship afloat. JAYAO has succeeded in putting out interesting and engaging articles that keep me (and everyone else!) coming back for more.

My favorite feature of JAYAO is the last section, “Voices of AYAO,” which shares stories from real patients and survivors, in their own words.  It’s great to hear about AYA cancer from the people who have lived it or are still living through it. It’s especially poignant after sifting through and disseminating the previous journal articles because it reminds you that there is a person behind every statistic and case study.

In this particular issue, a survivor named Jenee shares her story with cancer as both an adolescent and an adult. At 15, she was diagnosed with osteosarcoma and had to have her leg amputated; at 18 she had a relapse of osteosarcoma; and at the age of 38 she was diagnosed with Stage 2B ovarian cancer. She had to have a total hysterectomy followed by six weeks of chemotherapy, sending her body into immediate menopause. “It was easier to overcome the loss of my leg than the loss of my ability to bear children,”  she states.

Jenee goes on to discuss what the loss of her fertility meant to her and how she struggled with the lack of information she received regarding her fertility preservation options. It had immediate consequences and continues to be something she must overcome.  She states, “On a daily basis, I am reminded of my dreams of being a mother in others.” Reading this was heart wrenching, but at the same time her story serves as motivation for young cancer patients, their caregivers, and providers to be more informed about fertility options for cancer patients.

To read the latest issue of JAYAO and see Jenee’s story along with a variety of multidisciplinary content, please click here.

By Maya M. Harper, M.A.

Every year, 70,000 adolescents and young adults (AYAs) between the ages of 15-40 are diagnosed with cancer. They may experience this diagnosis as a devastating twist of fate that has the potential for derailing their life from its current track. However, with the changes in the oncology field, cancer has become something that is survivable. People can and do have full lives after cancer.

The cancer treatments that can save a person’s life are not without risks. One of these risks is loss or impairment of fertility. There are proactive measures, such as sperm banking and embryo freezing, that a person can take if they have time before treatment. However, they may not find out about these services until it is too late. Even if they are presented with options, they must make decisions when they are already overwhelmed with making decisions about cancer treatment.

It is not uncommon nowadays for people to put off having children or even thinking about children until 30 or later. A cancer diagnosis means that a young adult may have this decision thrust upon them without warning. They may not have a partner. Kids may be the furthest thing from their minds. They have to make the decision not only of whether they want children, but also whether they are willing to have a child with the intervention of medical technology. Heterosexual people, in particular, may have always assumed that they could have children “naturally” someday. They may have much to consider. Fertility issues can also impact the romantic relationships of young adults who have been diagnosed with cancer.

Our new study – An Examination of Cancer Related Fertility Concerns– seeks to find out how people learn about and feel about fertility implications of cancer and cancer treatment. We would also like to find out whether there are differences in the ways that people of various sexual orientations and genders experience these implications. Heterosexual people and LGBT (lesbian, gay, bisexual, and transgender) people may tend to have different views of biological reproduction even prior to a cancer diagnosis.

Therefore, we are recruiting people who were diagnosed with cancer as young adults. We’d like to talk with them about their experiences for 45 minutes to an hour. I am excited to begin this study, because it is something that is truly novel. We are looking at oncofertility through a different lens than has been done before.  We may find interesting and useful results about the roles of sexual orientation and gender with respect to oncofertility. If you are interested in the study, please contact Maya Harper at maya-harper@northwestern.edu