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Learning to Bridge the Information Gap

Best health blogs 2013Information gaps are widely apparent in patient-physician relationships due to a multitude of factors.  Some patients are not interested or emotionally able to process information provided by the physician while certain physicians may not be comfortable discussing various options with their patients or feel that they are not appropriate candidates for a particular procedure.  Whatever the reason for the disconnect, healthcare providers and patients need to find a way to meet in the middle and discuss the difficult decisions and side effects of potential treatments.  Thankfully, the next chapter of Oncofertility Communication: Sharing Information and Building Relationships across Disciplines addresses these gaps in detail.  The authors, Allison Goetsch, Amber Volk, and Dr. Teresa K. Woodruff identify the three main gaps that have created an unmet need for fertility preservation: an information gap, a data gap, and an option gap in the chapter Genetic Counselors: Bridging the Oncofertility Information Gap.

The information gap involves the lack of understanding cancer patients have regarding the possible fertility side effects of their cancer treatment.  Unfortunately, many oncologists do not have the time to discuss future fertility options with patients because their immediate concern is on saving the life of the patient.  Oncology staff feel secure in their decision to withhold fertility information in the effort to quickly proceed with treatment along with the fact that they may not feel adequately educated on fertility preservation options and lack sufficient communication skills to counsel patients on this difficult decision.  With proper counseling, oncology providers would be adequately prepared to facilitate discussions on fertility preservation and post-cancer quality of life.  Without such counseling, patients may feel that oncology healthcare providers do not value their decisions regarding fertility preservation or support their desire to attempt a pregnancy following treatment.  Healthcare providers should never assume that they understand the fears, desires, or preferences of each patient.

With the increase in multidisciplinary cancer care programs, many patients and providers will thankfully have access to skilled genetic counselors.  The genetic counselors are medical professionals who have undergo extensive training in human genetics as well as psychosocial skills.  These psychosocial skills allow genetic counselors to provide much-needed emotional support to the patients, assess psychosocial situations, and provide mental health referrals as needed.  They offer patients a safe place to share concerns and help to reduce anxiety, enhance the patient’s sense of control and increase the patient’s understanding of their disease and options for testing and disease management.

As the authors addressed, the oncofertility information gap can be remedied with the implementation of a multidisciplinary approach to fertility preservation.  This includes not only giving patients access to fertility specialists and skilled oncologists, but offering them access to members of the team who can provide psychological support and counseling.  The National Comprehensive Cancer Network (NCCN) guidelines for young adult cancer recommend a genetic and familial risk assessment within the first 2 months after the start of treatment.  However, healthcare providers should refer young women to genetic counselors prior to treatment.  In doing so, genetic counselors will effectively bridge the oncofertility information gap.

We invite you to continue reading Oncofertility Communication: Sharing Information and Building Relationships across Disciplines and share your thoughts with your healthcare team and to view the Oncofertility Consortium‘s Virtual Grand Rounds featuring Dr. Angela K. Lawson discussing “Psychological Aspects of Fertility Preservation“.

 

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A Day in the Life of the Woodruff Enterprise

by Megan Carlson, Guest Blogger for the Oncofertility Consortium

My name is Megan, and I will be your guest blogger for today.

I’m a journalism graduate student who had the great pleasure of shadowing Dr. Teresa Woodruff Tuesday as part of my health and science reporting practicum.

As soon as I arrived at 8 AM, Dr. Woodruff and I hit the ground running– greeting and checking in with the entire staff, from the program managers to the researchers already diligently at work in the lab.  This daily process is part of Dr. Woodruff’s efforts to maintain open communication with the entire lab.

We next traipsed over to a large conference room, where a group of 15 mostly-female scientists were already gathered with coffee and notepads ready for the weekly staff meeting, called the “R3 Data Club.”  Dr. Woodruff insists the entire team (who are located in several different locations) meet via web conference each week to discuss developments in the lab and present their research.  This is another explicit effort by Dr. Woodruff to ensure her team acts on the same page and immerses younger team members in the mission and work of the lab.

While some of the nitty-gritty details flew over my head (my knowledge of science could probably fill a thimble), I was impressed by the engagement of the staff as they listened to and questioned postdoctoral fellow, Pam Monahan, PhD’s, presentation on interactions among signaling pathways leading to potential disruptions in follicle development (itself, a possible contributing factor topolycystic ovary syndrome).

After the meeting, we rushed off to a government relations teleconference where a group, including Sharon Green, executive director of the Women’s Health Research Institute (WHRI) and Nadia Johnson, a program manager, planned the Chicago and Springfield Women’s Health Week celebrations.  Dr. Woodruff quickly switched her hat from hard-nosed scientist, asking pointed questions to her researchers about gene signaling pathways, to politically-savvy division chief, strategizing about how to best promote gender-specific scientific research to legislators, scientists and other interest groups.

I spent the remainder of the day shadowing Dr. Woodruff as she discussed efforts to increase enrollment in the Illinois Women’s Health Registry–an initiative that seeks to overcome the lack of sex-specific scientific research by connecting female research participants and researchers— and then following program managers and researchers who introduced me to the work of the Oncofertility Consortium.

The day was an educational whirlwind.  I absorbed a flood of scientific information about infertility, fertility preservation, and the reproductive system (augmented by time I spent Monday in the reproductive fertility clinic of Dr. Mary Ellen Pavone, who works closely with Dr. Woodruff).  I also witnessed the behind-the-scenes political work, research, and coordination that function to produce the newest innovations in fertility treatment and women’s health.  It was fascinating to see all the cogs in the machine interact together to create these beneficial and progressive outcomes.

New Chemo Drug Gentler on Fertility, Tougher on Cancer

By Marla Paul

A new gentler chemotherapy drug in the form of nanoparticles has been designed by Northwestern Medicine® scientists to be less toxic to a young woman’s fertility but extra tough on cancer. This is the first cancer drug tested while in development for its effect on fertility using a novel in vitro test.

The scientists designed a quick new in vitro test that predicts the toxicity of a chemotherapy drug to fertility and can be easily used to test other cancer drugs in development as well as existing ones. Currently the testing of cancer drugs for fertility toxicity is a time and resource intensive process.

“Our overall goal is to create smart drugs that kill the cancer but don’t cause sterility in young women,” said Teresa Woodruff, a co-principal investigator of the study and chief of fertility preservation at Northwestern University Feinberg School of Medicine. The paper was published March 20 in in the journal PLOS ONE.

The scientists hope their integration of drug development and reproductive toxicity testing is the beginning of a new era in which chemotherapy drugs are developed with an eye on their fertotoxity (fertility toxicity). As cancer survival rates increase, the effect of cancer treatments on fertility is critically important to many young patients.

Read more…

Chicago Tribune Talks Fertility Preservation with Oncofertility Consortium Members

By Cathryn Smeyers

A recent article in the Chicago Tribune entitled “New programs give hope to young cancer patients about bearing children,” discusses the field of oncofertility and how it can positively impact the lives of female cancer patients.

The article opens with the story of Jenna Benn, an Oncofertility Consortium favorite who was diagnosed with a form of lymphoma in her late twenties.  For Benn, the possibility that she could lose her fertility from life-saving cancer treatment was of great concern.  Fortunately, as Northwestern is the home base for the Oncofertility Consortium, Benn was in good hands and immediately introduced to Kristin Smith, the hospital’s Fertility Preservation Patient Navigator.  Smith outlined the primary fertility-sparing options that exist for young women facing cancer diagnosis: embryo banking, egg banking, ovarian tissue banking, or surgical procedures to remove or protect the ovaries.  Benn ultimately opted for egg banking and had her own eggs frozen before undergoing six rounds of intensive chemotherapy.

As the article goes onto discuss, though, unlike Benn, not all female cancer patients are made aware of the potential threat to their fertility and the choices available to them.  Dr. Teresa Woodruff coined the term “oncofertility” in 2006, and it is still a relatively young field.  While great strides have been made in availing patients of fertility preservation options, challenges still exist.  For example, there are many doctors who feel that it’s important to stay focused on saving a patient’s life and not necessarily her fertility.  Many women who are informed of their options are ultimately deterred by the cost of fertility preservation measures, which can run between $10,000-$15,000 and are not often covered by insurance.  Also, ethical questions arise with the question of how to handle unused embryos.

Everyday, the Oncofertility Consortium and our partners are working to overcome these hurdles.  We spread the word through our research, blogs, iphone app, and advocacy work.  After her struggle with cancer and fertility preservation, Benn is now a regular contributor to the Oncofertility Consortium and was our featured guest at last year’s gala.  Living in remission and now newly engaged, Benn runs her own cancer support group called Twist out Cancer, which “leverages social media to help survivors and their loved ones combat the feelings of isolation, loneliness, and helplessness that often accompany cancer diagnoses and treatment.”  Make sure to check out their upcoming event Brushes with Cancer, an evening celebrating survivorship and hope through art, music and storytelling, on Wednesday April 17th at Floating World Gallery in Chicago.  Tickets and additional details can be found here.

The Need for Greater Awareness About Fertility Preservation

Over the last twenty years, advances in fertility preservation techniques have made oncofertility more accessible to women diagnosed with cancer or other fertility impacting diseases. Despite this good news, the academic journal, Cancer, recently reported that between 1993 and 2007, only 4% of women between the ages of 18-40 diagnosed with cancer, sought out fertility preservation. In Cancer Today, a medical magazine issued by the American Association for Cancer Research, addresses this disparity in a new article entitled, “Fertility Preservation Catches On, But Slowly,” arguing that new cancer patients need information and referrals to reproductive specialists immediately after diagnosis to ensure they have the best possible chance of preserving their fertility if they choose to do so.

Studies show that discussing fertility preservation with a cancer patient may depend on several factors including education, socioeconomic status, sexual orientation, and whether or not the cancer patient already has children. According to Cancer Today, “college graduates [are] up to 40% more likely to be counseled than those without a bachelors degree.” Teresa K Woodruff, reproductive endocrinologist and director of the Oncofertility Consortium maintains that this disparaging information highlights the gap between getting fertility preservation counseling and taking action.  She also argues that “cancer patients need to be seen on that same day as diagnosis or within the next 24 hours,” by a reproductive specialist.

So what can we do to ensure that every young cancer patient has the same opportunity to preserve his or her fertility prior to treatment? The Oncofertility Consortium has led the way not only research, but also in advocacy, making fertility preservation a public discussion so that both clinicians and patients are aware of the potential damage cancer treatment can have on fertility. The more knowledge one has, the more likely they are to make an informed decision in that critical timeframe between diagnosis and treatment.

To read, “Fertility Preservation Catches On, But Slowly,” in Cancer Today, please click here. If you or someone you know needs information on fertility preservation, including options, techniques, clinics, cost, etc., please click on links below for more information.

 

Now Available on Amazon.com! Oncofertility Medical Practice: Clinical Issues and Implementation

Thus far, it’s safe to say that both cancer survivors and the medical community have acknowledged the importance of patient counseling and the pursuit of fertility preservation options prior to starting cancer treatment. Over the last year, the oncofertility consortium has been busy putting together the third book in the oncofertility series with some of the most prominent members of the oncofertility community. The first book, Oncofertility: Fertility Preservation for Cancer Survivors, addressed the complex reproductive issues associated with the treatment of malignant diseases by recognized leaders in the field who discussed scientific advances, applications of modern technology, psychosocial implications, ethical considerations, and current options for men and women confronted with therapies that affect fertility. The second book, Oncofertility: Ethical, Legal, Social, and Medical Perspectives, moved beyond oncofertility as a science and medical technology and to addressed the social, legal, and ethical ramifications of the field.

Oncofertility Medical Practice: Clinical Issues and Implementation, the third in the series on fertility preservation for cancer patients, explains the latest practices and emerging treatments in oncofertility and provides necessary information on the successes, risks, and limitations of fertility preserving technologies. Oncofertility Medical Practice: Clinical Issues and Implementation is an up-to-date resource for all those practicing in the field of oncofertility, but this book is specifically geared toward clinicians.  As with the previous two books, Oncofertility Medical Practice: Clinical Issues and Implementation is written by an impressive multi-disciplinary group of specialists in the fields of oncology, reproductive endocrinology, urology, patient navigation, bioethics and many more. Chapters and authors include:

  • Gonadotoxicity of Cancer Therapies in Pediatric and Reproductive-Age Females by Jennifer Levine, MD
  • Gonadotoxicity of Cancer Therapies in Pediatric and Reproductive-Age Males by Jill P. Ginsberg, MD
  • Fertility Preservation in Males by Landon Trust, MD & Robert Brannigan, MD
  • Embryo and Oocyte Banking by Lynn M. Westphal, PhD and Jamie A.M. Massie, MD
  • Ovarian Tissue Cryopreservation and Transplantation by Laxmi Kondapalli, MD, MS
  • The Role of In Vitro Maturation in Fertility Preservation by Peter S. Uzelac, MD, Greg L. Christiansen, PhD, and Steven T. Nakajima, MD
  • Mitigating the Risk: The Role of Ovarian Transposition and Medical Suppression by Jaime M. Knopman, MD, and Nicole Noyes, MD
  • The Birds and the Bees and the Bank: Talking With Families About Future Fertility Amidst a Cancer Diagnosis by Gwendolyn P. Quinn, PhD, Caprice A. Knapp, PhD, and Devin Murphy, PhD
  • Addressing the Three Most Frequently Asked Questions of a Bioethicist in an Oncofertility Setting by Lisa Campo-Engelstein, PhD
  • Pregnancy in Cancer Survivors and Patients by Eileen Wang, MD
  • Communication Between Oncofertility Providers and Patients by Jennifer Mersereau, MD
  • Setting up an Oncofertility Program by H. Irene Su, MD, Lindsay Ray, BSN, and R. Jeffery Chang, MD
  • Patient Navigation and Coordination of Care for the Oncofertility Patient: A Practical Guide by Kristin Smith, Brenda Efymow, RN, BSN, and Clarisa Gracia, MD
  • Preparing an Interdisciplinary Workforce in Oncofertility – A suggested educational and research training program by Christos Coutifaris, MD, PhD
  • Clinical Cases in Oncofertility by Clarisa Gracia, MD
  • Appendix – Oncofertility Resources for the Clinician by Kate E. Waimey, PhD

Click here for more information or to place an order on the groundbreaking new book, Oncofertility Medical Practice: Clinical Issues and Implementation, at Amazon.com.

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 Role of OB/GYN in Comprehensive Cancer Care

What is the role of an obstetrician/gynecologist in cancer care for young women? When you think about cancer and cancer treatment, most likely you’re thinking of oncology and what line of defense will be taken against the cancer. A new article in Clinical Obstetrics and Gynecology from Oncofertility Consortium members, Betty Kong, BA, Robin Skory, BS, and Teresa K Woodruff, PhD, entitled “Creating a Continuum of Care: Integrating Obstetricians and Gynecologists in the Care of Young Cancer Patients,” argues that in some cases, the OB/GYN is the key component in this game.

Kong and Skory are both Woodruff Lab members pursuing dual MD/PhDs at Northwestern University, meaning they want to be involved in both the clinical and research aspects of oncofertility. Clearly they are invested in the scientific pathways oncofertility has to offer, but from a clinical perspective, they assert that obstetrician gynecologists are the best advocates for their patients to help them make informed decisions about their future fertility. According to the authors, “obstetricians and gynecologists [are] the primary physicians to many women during their reproductive years [thus] are in a unique position to be at the forefront of the oncofertility initiative by ensuring [they receive] the proper counseling, referrals, and continuity of care for their patients before, during, and after cancer treatment.”

For many young women, once they’ve reached the pinnacle of pediatric care (18yrs old), they are no longer regularly immersed in follow-up medical care as parents, schools, etc, require. Often the physician they see the most is their OB/GYN, whether it be for birth control options, pre natal care or their yearly exams. Many young women build long-standing patient/physician relationships with their OB/GYN as they did with their pediatricians. It is with this understanding that the authors claim the responsibility for the continuum of care falls upon the OB/GYN in many cases. Thus, the more informed they are in the field of oncofertility, the less patients will encounter a gap in their comprehensive cancer care, specifically in fertility preservation.

An OB/GYN is also in a key role should a cancer diagnosis present itself during a woman’s pregnancy. More studies need to be done on the long term affects of chemotherapy regimes on fetus development and future fertility, but there are treatments that women can undergo in their second and third trimester of pregnancy to try and eradicate the disease. According to the authors, “although it is an uncommon diagnosis, cancer during pregnancy presents a critical scenario that must be carefully treated by a multidisciplinary team of obstetrician gynecologists, medical oncologists, radiation oncologists, surgeons, pediatricians, genetic counselors, and patient navigators.” Again, as the multidisciplinary field of oncofertility develops, it is imperative that clinicians and scientists from diverse fields collaborate to provide patients with the best care possible and the most options for their future fertility.

To read the article, “Creating a Continuum of Care: Integrating Obstetricians and Gynecologists in the Care of Young Cancer Patients,” please click here.

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Bright Pink and the Oncofertility Consortium Partner Up for Fertility Preservation

Earlier this year, I blogged about a young woman and volunteer with Bright Pink, Kristin Nelson, who had preventative ovarian removal after she tested positive for BRCA1. BRCA1 and BRCA2 genes are a class of genes otherwise known as tumor suppressors, and a mutation of these genes has been linked to a significantly increased risk for the development of breast and ovarian cancer at an early age. Kristin had enough of a family history of breast and ovarian cancer to want to take measures to protect herself, should she develop cancer as well. Knowing this would impact her fertility, she decided to bank eggs and embryos prior to her oophorectomy.

Luckily, Kristin knew enough about her fertility risks with BRCA1 to pursue fertility preservation prior to her surgery, but not everyone has the same experience. In an attempt to raise awareness and education about fertility preservation in high-risk young women, Bright Pink has partnered up with the Oncofertility Consortium to present, Fertility Preservation for High-Risk Young Women National Teleconference on November 15th at 8:00EST. The teleconference seeks to help high-risk young women understand the basics of fertility concerns, their options for fertility perseveration and parenthood, and provide valuable resources that are available. Leading the information session will be Oncofertility Consortium Director, Teresa K Woodruff, along with Kristin Nelson and Melissa Synder from Bright Pink. To learn more about how you can participate in this teleconference or to register, please visit www.bebrightpink.org.

 

Are you a cancer survivor? Help oncofertility researchers study and prevent treatment-induced fertility loss by joining the FIRST online fertility registry for cancer survivors!

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