Fertility Preservation and Sex Disparities

Infertility has been associated with psychological distress and can have a negative impact on quality of life in cancer survivors.  Reproductive concerns are often sited among young cancer survivors prior to, and following cancer treatment. A number of fertility preservation (FP) options are available to preserve patients’ future reproductive ability. For men, sperm banking is a clinically established method, and a relatively straightforward procedure in comparison to FP for women, which is more complex. In a new article published in the Journal of Clinical Oncology by authors Gabriela M. Armuand, Kenny A. Rodriguez-Wallberg, Lena Wettergren, Johan Ahlgren, Gunilla Enblad, Martin Ho ̈glund, and Claudia Lampic, entitled, “Sex Differences in Fertility-Related Information Received by Young Adult Cancer Survivors,” the authors investigate male and female cancer survivors’ perception of fertility-related information and use of FP in connection with cancer treatment during reproductive age.

The authors used a sample of 484 survivors diagnosed from 2003 to 2007 identified in population-based registry in Sweden. Inclusion criteria included survivors who were age 18 to 45 years at the time of diagnosis and had lymphoma, acute leukemia, testicular cancer, ovarian cancer, or female breast cancer treated with chemotherapy. Study participants were asked to fill out a questionnaire assessing their experience with FP and knowledge of FP techniques following a cancer diagnosis.

The majority of male participants reported having received information about treatment impact on fertility (80%) and more than half of the men banked frozen sperm (54%). Among women, less than half reported that they received information about treatment impact on fertility, and 14% reported that they received information about FP. Only seven women, or 2%, underwent FP.  Sex was the single most important predictor for receipt of information about FP; a man was 14 times more likely to report having received such information than a woman. The results of this study are even more interesting when you take into account that in Sweden, infertility treatment is part of the tax-funded health care system; therefore, FP is available to all patients with cancer. Nonetheless, this did not seem to have an impact on female access to FP information and services.

The results of this study suggest significant sex differences when conveying fertility-related information and the use of FP. As a result, the authors argue that there is an urgent need to develop fertility-related information adapted to female patients with cancer to improve their opportunities to participate in informed decision-making regarding their treatment and future reproductive options. In an effort to meet the needs of young female cancer patients, the Oncofertility Consortium developed educational materials to help young women and their families better understand their fertility preservation options. Read, “Sex Differences in Fertility-Related Information Received by Young Adult Cancer Survivors.”

May 17th Live Podcast: Reproductive Technology at the Office of Research on Women’s Health

A person’s health is influenced by many factors; including, sex, gender, culture, environment, and income. Researchers are discovering the critical roles that sex and gender identity play in health, wellness, and disease progression. The discoveries being made through the study of women’s health and sex differences are key to advancements in personalized medicine for both sexes.

The Office of Research on Women’s Health (ORWH) was established in September 1990 in response to congressional, scientific, and advocacy concerns that a lack of systemic and consistent inclusion of women in National Institutes of Health (NIH) supported clinical research could result in clinical decisions being made about health care for women based on findings from studies of men—without evidence that they were applicable to women. Since that time, the Office has been the focal point for guiding the national research effort on women’s health issues and is responsible for ensuring that women’s health research priorities are integrated into the wider NIH research agenda. The mission of ORWH is to:

  • Advise the NIH Director on matters relating to research on women’s health
  • Strengthen and enhance research related to diseases, disorders, and conditions that affect women
  • Ensure that research conducted and supported by NIH adequately addresses issues regarding women’s health
  • Ensure that women are appropriately represented in biomedical and biobehavioral research studies supported by NIH
  • Develop opportunities for and support recruitment, retention, reentry, and advance- ment of women in biomedical careers
  • Support research on women’s health issues.

ORWH works in partnership with the 27 NIH Institutes and Centers to ensure that research on women’s health is part of the scientific framework at NIH, and throughout the scientific community. ORWH develops and supports scientific seminars, symposia, and workshops that highlight scientific advances, career development, and promising as well as accomplished researchers in this expanding field. This Thursday, May 17th, Oncofertility Consortium member, Dr. Clarisa Gracia is taking part in a seminar series sponsored by the ORWH entitled, Innovations in Reproductive Technologies from 1-3pm EST, which will be available to listeners live, via podcast. Highlights of the seminar include:

  • Ethical Issues in Emerging Technologies in Reproductive Medicine; 
Alan Decherney, MD, Head, Section on Implantation and Oocyte Physiology
Program in Reproductive and Adult Endocrinology
  • Emerging Technologies in Infertility; 
Clarisa Garcia, M.D., M.S.C.E, Assistant Professor Obstetrics and Gynecology
  • Technology in Reproductive Medicine; 
Alicia Armstrong, M.D., Associate Fellowship Program Director
Reproductive Endocrinology and Infertility
  • Multipurpose Prevention Technology for HIV, STIs, and Pregnancy
; Gustavo Doncel, M.D., Ph.D., Professor of Obstetrics and Gynecology
  • New Technology in Contraception Research
; Regine Sitruk-Ware, M.D., Reproductive Endocrinologist

Mark your calendars and tune in tomorrow to http://videocast.nih.gov at 1pm EST to listen live!

Gaps in Fertility Preservation Knowledge in Young Cancer Survivors

Infertility is serious and often underestimated side effect of cancer treatment. Ensuring cancer patients are equipped with the necessary health information to protect and preserve their fertility in a time sensitive manner is a critical component to comprehensive cancer care. In a new article in Nursing: Research and Reviews, by Angela Jukkala, Karen Meneses, Andres Azuero, June Cho and Patrick McNees, entitled, “Development of the Knowledge of Fertility and Fertility Preservation Scale,” the authors reported on a process used to develop and examine the reliability and validity of an instrument to measure a breast cancer survivor’s self-assessed knowledge of fertility and fertility preservation.

In their study, 92 breast cancer survivors between the ages of 25-45 were asked to complete the Knowledge of Fertility and Fertility Preservation (KF) Scale as part of their participation in a larger study, the Fertility Cancer Project (FCP). The KF Scale is a new instrument designed to measure a breast cancer survivor’s self-assessed level of knowledge of fertility and fertility preservation. The content of the KF Scale was developed through a comprehensive review of the literature, researcher clinical expertise, and expert review to meet the fertility and fertility preservation knowledge needs of young breast cancer survivors. The KF Scale included 13 content areas grouped into three subscales: Treatment Factors Affecting Fertility, Infertility Information, and Alternative Parenting Options.  All items were scored on a 1–3 rating scale with 1 representing “a little”, 2 representing “some”, and 3 representing “a lot” of knowledge.

The results of the KF Scale analysis were consistent: many participants self-assessed their overall knowledge of fertility and fertility preservation as “a little” and the majority rated their knowledge for the Infertility Information subscale as “a little.” What this means is that most patients completed their chemotherapy treatment having only “a little” knowledge of cancer treatment’s impact on their fertility and only “a little” knowledge about fertility preservation options beforehand. These results suggest that more health-related communication and information about fertility impacting cancer treatment is needed prior to undergoing treatment. According to the authors, “Health care professionals providing care for young women newly diagnosed with breast cancer must be able to provide needed health information on a wide range of topics (eg, surgery, chemotherapy, fertility preservation) in a relatively short period of time.”

To ensure that patients receive quality nursing care, they need to be informed of the long-term side effects of chemotherapy, including infertility. The KF Scale could be used to develop individualized teaching plans to meet patient-specific fertility and fertility preservation health information needs. The KF Scale could also be used to examine the effectiveness of educational interventions if used before and after the intervention. Read “Development of the Knowledge of Fertility and Fertility Preservation Scale.”

This Mother’s Day: A Journey Through Fertility Preservation, Surrogacy and Sisterhood

This Sunday is Mother’s Day. Many of you may have plans with your family doing your best to ensure that the day is celebrated, and the women in your life who fit this profile, past and present, are honored in some way. It goes without saying that being a mom is rewarding, but it can also have its challenges so it’s only right that we have one calendar day each year designated to showing gratitude for motherhood. That being said, what constitutes motherhood, comes in all different shapes and sizes…

In 2008, at age 26, Melissa Brown was diagnosed with breast cancer. Cancer was no stranger to her family – her mother had been battling breast cancer on and off since she was two years old.  Melissa had been giving herself breast exams since she was 12 so when she found the pea-sized lump in her breast, she knew something was amiss.  Within days of finding that lump, she was diagnosed with breast cancer and would eventually undergo chemotherapy (side by side with her mother) and have a bilateral mastectomy. Thankfully in Melissa’s case, her oncologist, the same one who had been treating her mother for 20 years, encouraged her to preserve her fertility before she began treatment for her cancer. Following his advice, she began taking fertility drugs to produce multiple eggs for fertilization, and with the help of her fiancée Steve, banked 4 embryos prior to cancer treatment.

Melissa’s cancer treatment was filled with highs and lows – she married Steve, and lost her mom to cancer. Following treatment, she wanted to have a baby with her new husband, however her oncologist recommended that if she wanted to have children, she use a gestational carrier or surrogate due to the possibility of cancer recurrence. Melissa was at a crossroads, until her younger sister Jessica, 25 at the time, said that she would carry Melissa’s babies for her. Melissa realizing the breadth of Jessica’s kindness and the responsibility she would undertake, agreed, but only after lengthy discussions and a little bit of soul searching.

Months earlier, Melissa and Steve banked their embryos at UPenn with the assistance of Oncofertility Consortium member, Dr. Clarisa Gracia. Now, under different circumstances, Melissa (with her sister in tow) was meeting with Dr. Gracia to discuss surrogacy. Dr. Gracia recognized that Jessica was not the ideal surrogate – she was young and had not given birth before, having no children yet. Complications could arise from a pregnancy, potentially leaving Jessica unable to have her own children one day. According to Gracia, “I was very concerned from the get-go, [but] she just really wanted to do this for her sister.”

In 2010, Dr. Gracia transferred two of the 4 embryos into Jessica’s uterus – both implanted, resulting in twins. Nine months later, Melissa and Steve were parents to Brendan and Gabriella via C-section. This Mother’s Day, as the twins are learning to walk, Melissa and Jessica will celebrate their mother’s memory and the bond that they have, which has only been strengthened through this journey. Read Melissa and Jessica’s entire story on Time.com, by author Bonnie Rochman, entitled, “My Sister, My Surrogate: After Battling Cancer, One Woman Receives the Ultimate Mother’s Day Gift.”

Oncofertility at the USA Science & Engineering Festival

By Nadia Johnson

In October 2010, the Center for Reproductive Research (CRR) supported an exhibit at the inaugural USA Science & Engineering Festival, held on the National Mall, in Washington, DC, in which we showcased the Women’s Health Science Program, drew attention to the under-representation of women in the science workforce, and presented knowledge about research focused on women’s reproductive health.  The festival was a great success, so we didn’t hesitate when we were asked to participate in the 2nd annual USA Science & Engineering Festival, which took place in the Walter E. Washington Convention Center in Washington DC on April 28-29, 2012.

The title of our booth this year was “Just Bead It,” and focused on an activity that we do in the Women’s Health Science Program to teach our students about oncofertility – making alginate beads!!

Our activity was a huge attraction for young and old alike…while the youngest could not fully grasp what they were doing, the adolescents and adults were fascinated to learn that this simple material (alginate) which stands in as a pimento in olives, is actually helping us make major advances in preserving female fertility.

The USA Science & Engineering Festival also provided us the unique opportunity to speak with the many fellow educators who were representing their institutions.

The event was a huge success!  This year’s festival contained double the number of exhibitors, and an estimated 150,000 people visited the Expo.  We all enjoyed the lively atmosphere, imbued with science curiosity, discovery, camaraderie and enthusiasm!

Fertility Concerns Among Female Adolescent Cancer Patients and their Parents

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.”



Scientists Around Globe Peer Into Chicago Microscope at Same Time

The Oncofertility Consortium uses emerging technologies, such as Virtual Grand Rounds, to speed the pace of research. Read about a new way we are doing this to facilitate global collaboration between scientists.


iExperiment technology gives overseas scientists direct view into Northwestern microscope during experiment, speeding efforts to grow human follicle into mature egg

By Marla Paul

CHICAGO – A scientist in Austria or elsewhere in the world can now peer into a Chicago collaborator’s microscope in real time while an experiment is being conducted at Northwestern University Feinberg School of Medicine.

iExperiment is a novel portal developed at Northwestern where scientists from around the globe can watch and participate in experiments in reproductive health for the Oncofertility Consortium, a National Institutes of Health-funded research project to explore reproductive options for cancer survivors.

“This is the first time researchers can look into a colleague’s microscope from anywhere in the world,” said Teresa Woodruff, director and founder of the Oncofertility Consortium and chief of fertility preservation at Northwestern’s Feinberg School.

The new application of technology will speed the pace of scientific discoveries, she said. “A better way to do science is to share it in real time and have people look at the data as it is collected and to apply that knowledge in their own laboratories,” Woodruff said. “And that is a real paradigm shift in science.”

An upcoming paper in The Journal of Adolescent and Young Adult Oncology describes Northwestern’s new uses of technology in oncofertility that can be applied to other scientific research.

Woodruff’s research focuses on growing a woman’s immature egg cell, contained in a tiny sac called a follicle, to a healthy and nearly mature egg in the laboratory. The research has the potential to eventually provide a new fertility option for women whose cancer treatments destroy their ability to reproduce.

Each digital microscope in Woodruff’s follicle culture room has a camera that streams live video via Vidyo desktop conferencing software. This gives scientists access to the laboratory from any location in the world and allows them to watch experiments on their computers or mobile devices and communicate directly with the researchers.

“Hopefully what we have done is catalyze the research so that instead of having to wait to see the results published, researchers can begin the next generation of work now,” said Woodruff, who also is the Thomas J. Watkins Memorial Professor of Obstetrics and Gynecology. “We think that is really going to mobilize reproductive health sciences in a significant way and could mobilize all science activities.”

The Woodruff Lab collaborated with Northwestern University Information Technology to implement the software and adapt existing video conferencing technologies to create iExperiment.

Woodruff’s goal is to grow a human follicle into a mature egg in vitro that can eventually be fertilized, which represents a solution for cancer patients. “If we work in a traditional way, by ourselves, it will happen, but it will happen too slowly,” she said. “So to ensure the pace and the quality of the research is as high as possible, we felt that a global collaboration was necessary.”

Last fall the group launched the first Oncofertility 101 course, in which international and United States researchers learn techniques used in Woodruff’s lab, such as in vitro follicle dissection. The iExperiment software is installed on their computers so they can work with Feinberg collaborators from afar and share data as it is being discovered, noted Kate Timmerman, director of the oncofertility program.

“Scientists come from as close as Madison, Wisconsin, and as far as Austria, Australia and South America,” Timmerman said. “iExperiment brings us together.”

Marla Paul is the health sciences editor at Northwestern University. Contact her at marla-paul@northwestern.edu

Nadia Johnson on Oncofertility Education and Policy

Recently my colleague and office buddy, Nadia Johnson, was featured in the Spring 2012 issue of Inquiry, Northwestern University’s School of Education and Social Policy’s (SESP) quarterly magazine, in an article entitled, “Higher Education Student Nadia Johnson: Motivating Girls to Study Science.” Nadia is the Co-Director for the Women’s Health Science Program (WHSP) and a graduate student at Northwestern pursuing a master’s degree in SESP’s Higher Education Administration and Policy program. Inquiry featured her as a student and Northwestern staff member who is making a difference in the lives of young women through science education.

As the Co-Director for WHSP, Nadia runs the Oncofertility Saturday Academy, along with programs in cardiology, physical science, and infectious diseases. The programs focus on bringing in girls who are under-represented in science and medicine, namely African American and Latina women, for a series of workshops open to high school juniors and seniors.  According to Nadia, “ When it comes to teaching science, we must better understand how boys and girls experience the science setting differently and how we can manage this so that girls can get just as far as boys.”

This past November, the WHSP program received the prestigious Presidential Award for Excellence in Science, Mathematics and Engineering demonstrating the enormous impact this program has had on young women in science. For Nadia, the formula is simple, “If you excel in something and you have praise, you tend to go down that path,” as was the case for her. She also emphasizes the importance of having young women mentored by female scientists and clinicians so they see firsthand, women who are working and exceling in science fields.

Not one to rest on her morals, Nadia is using her graduate research to improve the WHSP program and make the experience not only significant for the high school students, but also for program mentors (health care providers, medical students, faculty, etc…) who also participate.  Regardless of what the data shows, Nadia knows from experience that these kinds of programs, are a win-win for everyone involved.  Read, “Higher Education Student Nadia Johnson: Motivating Girls to Study Science.”

Take Your Kids to Work Day: Fertility Preservation for the Mini-Me’s!

Yesterday, April 26th, was Take Your Kids to Work Day and as always, the Woodruff Lab opened its doors to the future generation of white coats!  Woodruff Lab members brought their children in to take part in a day of activities to help them learn more about the research we do at the Oncofertility Consortium (and have a ton of fun while doing it)!  The kids ranged in age from 2 to 7, and we even had a 3 month old nearby refusing to nap as she could not keep her little eyes off of the fun experiments taking place around her.

Our morning activities included:

What is Alginate?

Mini-scientists learned what alginate is, where you find it in your every day life, and how we use it in the lab.  They made alginate beads, wrote a recipe for what they did, and drew their results in their notebooks.

Fun with dry ice and liquid nitrogen

Mini-scientists watched as a researcher used liquid nitrogen to freeze grapes and oranges. They got to feel and see the fruit before and after the freezing process and discussed how the process changed the fruits texture.

What Do you See Under the Microscope?

Mini-scientists looked at slides of oocytes under the microscope and drew what they saw in their notebooks.

What Does a Lab Mouse Do?

Mini-scientists got to meet and learn about how lab mice contribute to science. This was hands down, their favorite activity! 

After a long morning of scientific activities, our little lab members were treated to a nutritious lunch and a PBS broadcast of Sid the Science Kid, before heading home.  It was a great day and we love getting the opportunity to show children and young adults all the dynamic things we are working on in the lab to help cancer patients. Hopefully this will plant the seed in their young minds that they too can make a difference through science and innovative thinking.


Collaborative Care for Young Women with Post-Surgical Menopause

We talk a lot about the importance of collaborative care at the Oncofertility Consortium. Often cancer patients have a variety needs that require multiple specialists, thus the need to consult and collaborate to ensure the patient is receiving comprehensive care is pertinent. In a new article in the journal Familial Cancer entitled, “The Consequences of Risk Reducing Salpingo-Oophorectomy: The Case for a Coordinated Approach to Long-Term Follow Up Post Surgical Menopause,” the authors Carmel Pezaro, MD, Paul James, MD, Joanne McKinley, Mary Shanahan, Mary-Anne Young and Gillian Mitchell, MD argue that young women who have had risk reducing salpingo-oophorectomy (RRSO) need improved support services from their healthcare team in the long-term aftermath of this surgery.

First of all, let’s start by going over what salpingo-oophorectomy is for those of you who don’t know. Salpingo-oophorectomy is the removal of the ovary(ies) together with the fallopian tube(s).  For young women with mutations in BRCA1 and BRCA2 genes, an RRSO is often recommended as a preventative measure against the increased risk for breast and ovarian cancer prior to natural menopause.  Up to this point, no long-term studies have been done on pre-menopausal women who have undergone RRSO  focusing on the wider physical consequences of the surgery (aside from sexual dysfunction) such as the severity of menopause symptoms and risk factors like osteoporosis.

The significance of menopause systems in RRSO patients is important to investigate due to research suggesting  that surgical menopause “may result in a more rapid decrease in bone density when compared to natural menopause, it’s association with cognitive impairment or dementia, and an increased risk of cardiovascular mortality.”  Often health care providers emphasize the importance of RRSO in preventative cancer care, but it is unclear whether or not the long-term consequences of this surgery and the management of those symptoms are addressed. Furthermore, symptom severity was markedly higher in women who were less than 50 years old prior to surgery regardless of their menopause status.  The authors hypothesize that one reason for this may be that younger women are more affected by the sexual consequences of menopause because they are engaged in a greater amount of sexual activity.

The results of this study demonstrate that women are not receiving appropriate structured support for their symptoms post surgery. The authors suggest that because their follow-up care crosses many disciplines, it falls between the cracks as providers assume someone else is taking care of it, therefore the medical team providing the long-term genetic follow-up should also be reasonable for coordinating the long-term post RRSO management in conjunction with general practitioners. Read the article, “The Consequences of Risk Reducing Salpingo-Oophorectomy: The Case for a Coordinated Approach to Long-Term Follow Up Post Surgical Menopause.”

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