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.





Cancer Connections 2012: Treatment for the Mind, Body & Spirit

In 2007, the Robert H. Lurie Comprehensive Cancer Center at Northwestern began a program called Cancer Connections. Cancer Connections was a monthly event held for individuals affected by a cancer diagnosis, to learn about services, meet advocacy groups and get the tools needed to manage the disease.  Now in it’s fifth year, Cancer Connections is debuting a new format, location and time to better serve the cancer community!

Cancer Connections will now be a held three times a year, with the first event on Saturday, March 24th at Prentice Women’s Hospital in Chicago. The new event format will provide ways for both survivors and caregivers to learn wellness strategies for the mind, body and spirit. Cancer Connections will introduce tools, techniques and services used to re-energize individuals living with a cancer diagnosis. What you can expect:

Learn simple strategies for eating healthier, move more, and manage the stress and sleep difficulties sometimes associated with cancer.

Connect with networking groups, peer support programs and other communities, including the Oncofertility Consortium, committed to ensuring no one fights cancer alone.

Renew the sense of well-being by sampling massage, acupuncture, guided imagery, healing touch and other integrative therapies

Cancer Connections will also have licensed massage therapists on hand and workshops/breakout sessions on topics including:

  • Simple Strategies for Physical Fitness
  • Introduction to Yoga
  • The Secret of Support
  • Caring for the Caregiver
  • Conversation about Hope
  • Guided Imagery / Meditation

For more details about Cancer Connections or to register for the March 24th event, 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!

A champion for fertility preservation and quality of life after cancer

This is the second of a series of blogs that Medill journalism students are writing about their perspectives on oncofertility. Read the first blog by Zara Husaini.


By Christi Sodano-

A pioneer in the world of fertility preservation for young cancer patients, Dr. Teresa Woodruff of Northwestern University’s Feinberg School of Medicine, coined the term oncofertility and champions the idea of looking beyond the lab bench to the cancer patients affected by the studies.

Her research in reproductive endocrinology has increased awareness of fertility management and the role it plays in quality of life for the increasing number of women who are also young cancer survivors.

Woodruff addresses the main concerns and issues facing the field and the patients it is built around.

Q. What is oncofertility and what exactly does that encompass?

A. Oncofertility is a term to describe a new area of work that is used to provide fertility options to young cancer patients. It involves all the dimensions of a patient’s decision process and provider’s information. It is the ethics, the law, the religious constraints, and the multi-dimensionality of fertility management in the case of a young (ages zero to 40) cancer patient.

Q. What advice do you have for cancer patients concerned with fertility preservation? Where should they start and how can they find specialists that will work with their own doctors?

A. I think one of the main things is that cancer patients should really ask their doctors about the threat of their treatments to their fertility, because not all treatments are going to result in sterilization. Getting that information upfront is really important.

If their doctors don’t know, they should consult with a fertility specialist. Our oncofertility hotline can give them information about fertility management and their local experts. They don’t have to come to Chicago. There are 60 sites around America and we have partners in Europe, China and throughout the world that support fertility management.

Q. What options are there for cancer patients who are concerned about preserving and managing their fertility?

A. If you were able to protect your gametes before, it depends on what you protected. You might have gone through IVF and frozen a mature egg. Those mature eggs and ones that are fertilized with a husband’s, boyfriend’s, or a donor’s sperm can be re-transplanted into the patient.

For those who didn’t have their gametes protected, live births have also occurred after re-introducing preserved tissue transplants. However, there is the potential to reintroduce the cancer they just survived so we are working on ways to grow the tissue in culture and produce mature eggs that can be fertilized.

I think it is now 17 live births resulting from tissue culture.

For patients who were not aware or did not have time to access these options then adoption is now an option for them.

Q. What is the most common misconception regarding cancer patients and oncofertility?…Read more from the interview with Teresa K. Woodruff, PhD.

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.

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