Pediatric and Young Adult Cancer Patients and Fertility Preservation

At the Oncofertility Consortium, we stress the importance of collaboration among clinicians, basic scientists, and the humanities in an effort to ensure that cancer patients have fertility options after treatment. This is no small feat, but the emerging field of oncofertility is constantly evolving as new fertility preservation techniques are developed, existing ones are improved and the impact of gonadotoxic cancer treatment is examined. In a new article written by oncofertility researchers, Katherine E. Dillon and Clarisa R. Gracia, and edited by Jacqueline Jeruss, in the journal, Current Treatments in Oncology, entitled, “Pediatric and Young Adult Patients and Oncofertility,” the authors explore the various fertility preservation options available to pediatric and young adult patients and argue that a team approach is needed between oncologists and reproductive endocrinologists in order to provide the best outcomes for young patients.

Among the fertility preservation techniques currently available, the authors discuss options available for both males and females including lesser known options for females such as oophoropexy (relocating the ovaries out of the radiation field to protect them from exposure during treatment), and hormone replacement therapy for pre-pubertal cancer patients. Options available for males are sperm banking and testicular tissue banking for pre-pubescent males. Testicular tissue banking is still experimental and requires further scientific development.

Increasing numbers of pediatric and young adult cancer patients are surviving well into their reproductive years, therefore the authors state that clinicians need to be informed about the impact of cancer therapies on both males and females, as well as the available fertility preservation techniques for this demographic. They also maintain that it is imperative for clinicians to understand the most recent advances in oncofertility to better understand the future direction of the field and potential fertility preservation techniques that will one day be practiced in a clinical setting. To read, “Pediatric and Young Adult Patients and Oncofertility,” please click here.

Oncofertility: A Global Perspective

Christi Sodano from the Medill School of Journalism brings us the following insight on the global needs in fertility preservation for young patients. Read her first blog post.

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By Christi Sodano-

No longer just an old person’s disease, cancer among young people is increasingly prevalent. And while the growing field of oncofertility is gaining steam here in the U.S., more education and coordinated efforts are required to provide global awareness of the issues that young cancer patients face.

One of the main problems patients around the world often encounter is the lack of education or awareness among oncologists about new treatments and possibilities in the world of oncofertility.

Doctors are often concerned that delaying cancer treatment for fertility preservation procedures will harm the patient, said Dr. Melissa Hudson, director of the Cancer Survivorship division at St. Jude Children’s research hospital.

“Our perception as oncologists is that almost all options are still investigational. Because of this, fertility preservation is not really a priority. Those feelings can be easily transmitted to the patient,” she said.

However, she notes that especially in the cases of children with less aggressive cancers, a brief delay could be okay. It may only take a few days to harvest ovarian tissue that could enable an otherwise sterile young girl to have children later in life, something that is not widely accepted.

While physician education is ideal, patient awareness could ultimately solve this problem.

Many times patients go to their doctors after reading something in the media regarding oncofertility and that is how they learn about treatment options, said Johan Smitz, a fertility specialist and laboratory head at UZ Brussels.

“It all starts by educating the profession about the huge growth reproductive medicine has had over the last 30 years,” Smitz said.

Doctors now routinely take ovarian tissue samples and oocytes and freeze them as a method of preserving fertility. “I think it is now 17 live-births resulting from tissue culture,” said Prof. Teresa Woodruff, Ph.D., of Northwestern University’s Feinberg School of Medicine and  founder of the Oncofertility Consortium.

But awareness alone will not be enough to overcome the international barriers facing oncofertility. Coordinating national efforts is key in addressing this problem, Smitz said.

“There are approximately 1.4 million people in the world that will have a fertility threatening treatment. And globally, everyone needs to be aware that fertility preservation is a problem,” Woodruff said.

In some European countries, funding is largely dependent on publishing papers that impact the field of research.

“[In Belgium], the government provides funding for four years and they expect to see a lot of output from that, but the problem is, putting gonadal tissue in culture requires long-term research because it can take months to grow one mature, human oocyte,” Smitz said.

In an effort to address this issue and better coordinate research efforts, the European Society for Human Reproductive Embryology partnered with America’s Oncofertility Consortium to share information across borders.

Despite these efforts, one thing is clear, more research and awareness are required before fertility preservation becomes a mainstream global effort for cancer patients.

 

 

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.

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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.

 

 

 

 

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.

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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!

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