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New Study: Fertility Preservation Disparities in Women

A retrospective study is being published today that gives us a better idea of the barriers to fertility preservation among women with cancer. In the study, about 1,000 women who were diagnosed with cancer between 1993 and 2007, were asked about their counseling on fertility preservation prior to potentially-sterilizing treatments such as chemotherapy, pelvic radiation, pelvic surgery, or bone marrow transplant. Though more than 60% of survivors remember being counseled on fertility, only 4% actually pursued fertility preservation. This study also identified what factors made it more or less likely to be counseled and proceed with fertility preservation.

The study by Letourneau, Smith, Ebbel, Craig, Katz, Cedars, and Rosen asked women with common non-gynecologic cancers that are often treated with chemotherapy that may damage fertility, to participate in a study. In a recent interview, Teresa K. Woodruff  stated that “the study takes advantage of the  California Cancer Registry, which is a good tool for retrospective studies.” The authors found the women who chose to participate in the study averaged about 31 years old at the time of cancer diagnosis and 54% desired to have children after treatment.

In the article, “Racial, Socioeconomic, and Demographic Disparities in Access to Fertility Preservation in Young Women Diagnosed With Cancer,” though more than 50% of survivors reported to receive counseling about fertility by their oncology team, age, a desire for future children, and education level were more likely to receive counseling. Women with a college degree or greater were 20% more likely to receive counseling than women without.

Of all women, only 4% actually underwent fertility preservation. Age, a desire for children, lack of children, and education were significantly associated with these treatments. Additional non-significant trends indicate that, older women (over 35), those with children, and Latina women were less likely to pursue preservation. In the study, none of the 31 African American women and 29 women who identified with a sexual orientation other than heterosexual underwent fertility preservation.

While this study in Cancer highlights that disparities between fertility counseling and preservation services are still prevalent, there is some good news. First of all, though 60% of women in the survey reported to receiving fertility counseling, these increased approximately 1% a year between 1993 and 2007. Similarly, fertility preservation procedures were not reported at all in 1993, increased to 2% in 2000, and since then have been rising slightly more than 1% per year.


Are you a cancer survivor? Help oncofertility researchers study and prevent treatment-induced fertility loss by participating in fertility research for cancer survivors!

Fertility Preservation and African American Breast Cancer Patients

As previous studies have shown, women diagnosed with cancer during their reproductive years often do not receive adequate consultation, and sometimes none at all, regarding the fertility risks of cancer or its treatment.  Fertility is a unique survivorship issue that young cancer patients face, which can impact their quality-of-life after cancer treatment.  In the African American (AA) community, although more AA women are diagnosed with early-onset breast cancer than Caucasian women, little is known about patient awareness related to fertility or the rate at which providers are communicating potential fertility issues.

A new article in Supportive Care in Cancer by Oncofertility researchers, Susan T. Vadaparampil, Juliette Christie, Gwendolyn P. Quinn, Patrice Fleming, Caitlin Stowe, Bethanne Bower and Tuya Pal, entitled,  “A pilot study to examine patient awareness and provider discussion of the impact of cancer treatment on fertility in a registry-based sample of African American women with breast cancer,” examines patient/provider communication in the African American breast cancer population.  The authors studied AA women under the age of 50, diagnosed with invasive breast cancer between 2005 and 2006 in an effort to better understand the fertility communication and awareness barriers that may be in place for AA women being treated for breast cancer.

Similar to other studies, the authors found that a substantial proportion of young AA breast cancer patients were unaware of the impact breast cancer treatment would have on their fertility.  One half of young AA women diagnosed with breast cancer reported no discussion with their providers of fertility risks associated with their treatment.  The exception -women who were younger, had no children or few children, and had not undergone tubal ligation were more often aware of the fertility risks posed by their treatment.

The results of this study suggest that better communication and awareness about fertility is critical in order for AA patients to make informed decisions about their treatment.  In line with prior research, definite plans for childbearing, relationship status or sexual orientation should not play a role in whether or not someone is informed about their fertility risks. To learn more about this study or to read, “A pilot study to examine patient awareness and provider discussion of the impact of cancer treatment on fertility in a registry-based sample of African American women with breast cancer,” please click here.



Get EmPOWERed: Life After Cancer for Adolescent & Young Adult Survivors

What does empowerment mean to you? Does it mean giving someone the authority or power to do something… because that’s what you’ll find if you look it up?  The word is not a new one – it originated around the 17th century and the meaning has remained largely the same. People have a need for a word that makes them feel that they are or are about to become more in control of their destinies, and this is especially true when faced with a cancer diagnosis at a young age. On Saturday, April 14th from 10:00AM-4:00PM, the Robert H. Lurie Comprehensive Cancer Center will be hosting an event entitled, Get EmPOWERed: Life After Cancer for Adolescent & Young Adult Survivors.

At this inaugural event, young adult and adolescent cancer survivors will learn strategies and information to help them embrace life after treatment with confidence. Get EmPOWERed is an opportunity for everyone under the age of 40 who has been treated for cancer, including childhood cancer survivors who are currently 13 years of age or older, to share experiences and receive support. Family members, friends and caregivers are encouraged to attend as well!

Get EmPOWERed will cover a lot of ground so there is something for everyone.  Topics that will be explored include: talking about cancer with important people in your life; coordinating follow-up medical care; managing stress and other cancer-related emotions; making good choices about exercise and nutrition; addressing insurance, financial, legal and other practical concerns; exploring options for building a family after cancer with fertility preservation patient navigator, Kristin Smith; managing pain and other effects of cancer; and helping caregivers to care for themselves.

The event is being held at the LaSalle Power Company in Chicago and there is a small registration fee for participants, which includes all the workshops and admission to a VIP after-party event at Gilda’s Club Chicago.  This is a great event for the young cancer community so if you that sounds like you or someone you know, please come out and take part in this great event! For more information on Get EmPOWERed: Life After Cancer for Adolescent & Young Adult Survivors, including registration, please click here.

Oncofertility 101 and FertiPROTEKT: Fertility Preservation Across the Globe

Students and scientist-organizers of the March 12th Oncofertility 101 course

Last week, the Oncofertility Consortium hosted its second Oncofertility 101 course. In this laboratory-based course, organized by Francesca Duncan, PhD, and Jennifer Pahnke, MS, researchers learn the methods to study ovarian follicle growth in an in vitro setting. This intensive one-day course provides four scientists with the opportunity to gain instruction and practice in follicle isolation and encapsulation in alginate. In addition, they learn best practices in follicle culture, imaging, determining follicle quality. The attendees from the most recent course came from Southern Illinois University, University of Colorado, and Innsbruck Medical University in Austria.

Katharina Winkler, MD, a resident in Obstetrics and Gynecology and PhD graduate student in Innsbruck, Austria, traveled the farthest for the course. She also spent some extra time visiting with oncofertility researchers and gaining more practice in the Woodruff lab processing ovarian tissue in different species. She also met with researchers in the Shea lab to discuss ovarian grafting. As a clinician and researcher, she aims to help translate the basic research of these labs into her own practice providing fertility preservation to patients.

Before going back home, Winkler sat down and discussed her research and involvement in the European network in fertility preservation, FertiPROTEKT. This network, which was established in May 2006, by Michael von Wolff and others, includes reproductive experts from across Germany, Austria and Switzerland, who collect information about their fertility preservation patients and success rates. Like, the National Physicians Cooperative in the United States, these expert aim to expand and improve fertility preservation options for young patients. Later this week, these experts will meet to discuss their results at their annual meeting. The network is also in the process of expanding to include researchers from across Europe. We will continue to update you on progress from these and other fertility preservation networks across the globe.

Fertility, Premature Menopause and Quality of Life Concerns in Breast Cancer Patients

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.





Social Media and Fertility Preservation

A few students from the Medill School of Journalism have recently been providing us with their thoughts on oncofertility. Zara Huasini gives us her second post here on the intersection of oncofertility and social media. Read her first blog, Increased Awareness Could Save Fertility of Cancer Patients.


By Zara Husaini

If you enter a health concern into your Google search bar, I can almost guarantee that something will materialize.  Whether your query is expected (“do menstrual cramps hurt?”) or more outrageous, something will probably turn up.  For example: a few years ago I had a strange reaction to the piercing in my nose, and after a reading a particularly gruesome Yahoo! Answers thread, I was convinced that I’d wind up with a huge hole in my nose for the rest of my life.

It makes sense that people turn to the Internet about their most pressing concerns – it’s a safe way to gather information about things we’re not ready to discuss with anyone, not even a doctor.  The problem with this system is, misinformation abounds.

Northwestern University’s Oncofertility Consortium is doing its part to replace false information with real, verified medical fact.

“The Oncofertility Consortium only posts information that it believes is correct and authoritative. We work with the scientists and clinicians as needed to monitor and provide content for the oncofertility blog,” said program manager Angie Krausfeldt.

According to Krausfeldt, “Social media plays a significant role in breaking down barriers to communication and dispelling false or inadequate information.”

I think it’s important for medical experts to become more proactive in informing the public about about the health issues that they face. To me, the use of social media seems like the most current, effective way of doing this.

“I think that blogging and social media are a key outlet for keeping the public informed,” said Meredith Wise, a Northwestern University student.

Wise, who blogs for the Consortium, said: “it’s great that we have social media to use because in the past, most people got their health issue from their doctors or brochures they picked up when they had an appointment. We only go to the doctor every once in a while, so social media is a great way to reach people every day. I think Twitter is an especially great tool because everyone in the health community has lots of connections with each other there, and they can all help each other reach a broader audience and spread the word about health issues.”

If more medical professionals and organizations begin to spread accurate information via social media, it could diminish some of the anxiety that we experience when we just can’t make it to the doctor’s office and just can’t make sense of the symptoms that we’re experiencing.

The Oncofertility Consortium’s efforts should be commended and appreciated.  The staff is shedding light on an important issue that not everyone is aware of, encouraging discussion and clearing up some of the misinformation that exists all over the Internet.

Teresa K Woodruff, PhD: President Elect of the Endocrine Society

Please join us in congratulating Teresa Woodruff, PhD, Director of the Oncofertility Consortium and Thomas J. Watkins Professor of Obstetrics and Gynecology at the Feinberg School of Medicine at Northwestern University, on her election to the presidency of The Endocrine Society.  The Endocrine Society was founded in 1916 and is the premier organization whose mission is to advance scientific discovery, medical practice and human health in the field of endocrinology.  The society currently has more than 15,000 members, including clinicians and basic scientists, from all over the world.  Leading this organization is a very prestigious honor and a challenging job, but we know Dr. Woodruff is more than ready to take it on!

Dr. Woodruff continues Northwestern’s tradition of leadership in the field of endocrinology, and follows Neena Schwartz (1982-83), J. Larry Jameson (1999-2000), Andrea Dunaif (2005-06) and Kelly Mayo (2010-11) as Endocrine Society presidents from Northwestern University.

Congratulations Dr. Woodruff!

The Gynecologist and the Fertility Preservation Continuum

A cancer diagnosis can be daunting to put it mildly, but add to that potentially sterilizing chemotherapy and radiation regimes and a young cancer patient faces a future of uncertainty in terms of their fertility. Fertility preservation is an option which should be discussed with both men and women, but it can be particularly challenging with young women due to the fact that it can be time intensive (not all cancer patients have the time to undergo IVF) and because mature gametes are difficult to access. A new article by Oncofertility Consortium members, Francesca E Duncan, PhD, Jennifer K Jozefik, BS, Alison M Kim, PhD, Jennifer Hirshfeld- Cytron, MD, and Teresa K Woodruff, PhD entitled, The Gynecologist Has a Unique Role in Providing Oncofertility Care to Young Cancer Patients, argues that gynecologists are in a unique position as primary care providers (PCP) for many young women, to provide cancer patients with fertility preservation options and information pre and post-cancer treatment.

The Gynecologist Has a Unique Role in Providing Oncofertility Care to Young Cancer Patients focuses on young women and serves to provide gynecologists with a general understanding of how cancer therapies can affect fertility, what fertility preservation options are available to adolescent girls and young women, and how to access reproductive function pre and post cancer.  For example, the authors discuss the most common forms of fertility preservation techniques including egg banking, embryo banking and ovarian tissue cryopreservation. Every cancer patient has different options based on unique intrinsic factors including diagnosis, treatment course, age, ovarian reserve prior to treatment or anit-mullerian hormone (AMH) levels, and timing. It’s also important to note that fertility preservation options are constantly expanding as research translates to clinical practice.

The authors state that gynecologists have an opportunity to be an essential part of the oncofertility team because they interact more regularly with their patients throughout their cancer treatment and beyond. As we know, oncofertility is a multidisciplinary field requiring a team-based approach. The authors assert that, “gynecologists need to educate their patients about oncofertility because despite measures to introduce oncofertility into oncology settings, patients frequently report that they are not provided with ample information concerning fertility preservation,” from their oncologists. Therefore, the gynecologist acting as a PCP is in the most ideal role to communicate this important information.

To learn more about fertility-impairing cancer treatments, fertility preservation options, and the gynecologist’s role in oncofertility, click here to read, The Gynecologist Has a Unique Role in Providing Oncofertility Care to Young Cancer Patients.

Ovarian Tissue Induces Puberty After Stem-Cell Transplantation

We often discuss the many ways young people can preserve their fertility prior to undergoing medical procedures that may leave them sterile. One of these fertility preservation options, ovarian tissue cryopreservation, or freezing, has recently been reported in the Lancet medical journal, to also successfully be used to induce puberty in a 13 year old girl who had undergone a stem-cell transplant.

The authors of the study, Poirot, Abirached, Prades, Coussieu, Bernaudin, and Piver, report the case of a young girl with severe sickle-cell anemia. Sickle-cell anemia, or disease, is a recessive genetic disorder that causes the red blood cells to take on an abnormal “sickle” shape, which can cause reduced hemoglobin (carries oxygen to the bodily organs) and decreased blood flow. Sickle-cell disease can cause variety of symptoms including swelling of the digits, fever, chest pain, difficult breathing, and premature death.

In the case, a young girl’s sickle cell disease was so severe that she chose to undergo stem-cell transplantation. Prior to transplantation, patients may undergo total body irradiation or high levels of chemotherapy, which can often destroy their fertility, before the infusion of donor stem cells that may cure their disease. Before undergoing the irradiation, the 10-year old girl had one of her ovaries removed through a laparoscopic procedure, dissected into 23 pieces, and then frozen.

Three years later, at age 13, the girl returned to her clinicians with a problem. She had not yet shown evidence of entering puberty. The doctors then reimplanted 3 thawed pieces of her ovarian tissue in an attempt to induce puberty. Within two months, she started to develop breasts and pubic hair, and eight months after the graft, the girl had her first period. This is the first published report of ovarian tissue reimplantation for the express purpose of inducing puberty.

It is important to note a few things in this case. First of all, the clinicians in the case implanted the ovarian tissue in the abdomen, not in the normal location of the ovary, as the purpose was to induce puberty, not pregnancy. Secondly, though the procedure was a success, the girl’s menstrual cycles continued normally only for about two years and became irregular afterward. Thus, if she wishes to become pregnant later in life she may need to reimplant some of her remaining  ovarian tissue. Further effort by oncofertility researchers will be needed to 1) determine if ovarian tissue can reliably induce puberty in girls, 2) understand how ovarian tissue can be used to grow ovarian follicles in vitro, and 3) develop stem cell and cancer treatments that do not impact the hormonal health and reproductive potential of children.

2012 Chicago Oncofertility Saturday Academy at Northwestern University is Another Great Success!

By Nadia Johnson, Co-Director of the Oncofertility Saturday Academy

On Saturday, February 18th, 31 high school girls hailing from six different local Chicago high schools celebrated the culmination of the sixth annual Oncofertility Saturday Academy (OSA) with a family day and graduation event. OSA is the flagship academy of the Women’s Health Science Program, the award-winning science education program that aims to inspire high school girls from traditionally underrepresented backgrounds to pursue careers in science and medicine. OSA consists of a junior academy (JOSA) geared toward laboratory sciences, and a senior academy (SOSA) geared toward clinical sciences. Each academy includes weekly homework assignments, and three on-campus days filled with hands-on laboratory or clinical activities, workshops on such topics as sexual health and applying to medical school, and panel discussions with students or professionals in the field.

During family day, students demonstrate how much they have learned during the five-week program by presenting a capstone project, and rotating through stations that cover some of the academy topics with their families. For example, the SOSA students take their parents’ blood pressure (a skill they learned during the “Doctor for a Day” session) and the JOSA students show their parents how female fertility can be preserved through the use of follicle isolation and preservation in alginate beads (a technique pioneered by the Woodruff and Shea labs, that they learn about during the “Regulation of Ovarian Function” session).

Graduation follows family day, and is a chance for everyone – parents, siblings, and friends of the OSA students, and the over 100 OSA volunteers – to celebrate the accomplishments of the girls who were motivated and dedicated enough to complete homework assignments every week, and get up extra early on Saturdays to attend the on-campus all-day sessions. Each student gives a short speech before accepting her certificate and OSA patch. One student, a senior at Roberto Clemente High School, started her speech with: “I am very honored to be part of this program, this is the first year that it was opened to Chicago Public Schools [so] I am fortunate to be here.” Up until this year, the OSA program was only available to students from the Young Women’s Leadership Charter School. With the help of many teachers and advisors throughout the Chicago Public School system, the program leaders were able to offer the program to other qualified students this year; in addition to Clemente and Young Women’s, OSA student hailed from four other schools: Kenwood Academy, King College Prep, Lindblom Math and Science Academy, and Instituto Health and Science Career Academy.

Many other students commented on their favorite experiences during the academy in their graduation speeches. Several SOSA students remarked that using the da Vinci surgical robot, a $1.5 million system used for minimally invasive gynecologic procedures, during the “Oncofertility & Surgery” session, was their favorite part of OSA. Most of the students thanked their mentors – JOSA girls were partnered with scientist mentors and SOSA girls we paired with first year medical students. The girls were proud of what they had accomplished, and recounted their experiences during the program with a mixture of gratitude and amazement. One student, a senior at Young Women’s Leadership Charter School, concluded her graduation speech with a quote from author Sarah Caldwell: “Learn everything you can, anytime you can, from anyone you can – There will always come a time in your life, when you will be grateful that you did.”

It may appear that the OSA program is designed to teach high school girls about cancer, reproductive biology, and oncofertility, but the program strives to teach so much more than that. It is a program designed to empower young women with knowledge about their own bodies; a program with over 100 university staff, student, and faculty volunteers, who serve as role models and mentors during the program; a program looking to change the face of science and medicine. OSA is a program that takes young women who are willing to learn, and hopes to turn them into the scientists, physicians and leaders of tomorrow.


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