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.

Many of you may already know about the widely popular organization, Stupid Cancer, but for those of you who are new to our blog, Stupid Cancer is the nation’s largest support community for young adult survivors of cancer. They support a global network of survivors, caregivers, providers and advocates to ensure that no young adult is unaware of the age-appropriate resources available to them. Stupid Cancer empowers young adults affected by cancer through innovative and award-winning programs and services, including Stupid Cancer Happy Hours, the Stupid Cancer Show, and the annual OMG! Cancer Summit for Young Adults.

The annual OMG! Cancer Summit for Young Adults is the premier oncology conference and social networking event for the young adult cancer movement. A pivotal healthcare event, OMG! is one of the largest gatherings of young adult patients, survivors, caregivers, professionals and advocates in the world. The event inspires thousands to get organized, build community and unite as one to drive change. In April, Stupid Cancer hosted its sixth OMG! Cancer Summit in Las Vegas, NV, and attracted over 600 attendees. As one would expect, Stupid Cancer makes the weekend-long event not only informative but also FUN, with events such as an ice cream social, and Stupid Cancer pub trivia.

Over the last few years, members of the Oncofertility Consortium have attended OMG! to help young survivors understand their fertility options and provide resources and pertinent information to young adults whose fertility may have been affected by their cancer treatment. This year, Consortium member, Laxmi Kondapalli, MD, MSCE, moderated two breakout sessions entitled, “Fertility: Rights & Options With, Through, And Beyond Care.” Dr. Kondapalli served as the clinical expert and reproductive health specialist alongside Alice Crisci, advocate and Founder of Fertile Action, and Jennifer Rockman, ovarian cancer survivor.

The framework of their session revolved around all the different routes to parenthood available to young cancer survivors, including banking eggs, embryos, ovarian tissue, and semen; using a gestational carrier; and pursuing adoption. Dr. Kondapalli stated that the overwhelming theme that evolved from the sessions was the lack of information presented to newly diagnosed cancer patients regarding the potential impact on their fertility. Attendees were eager to learn about the different tests available to gauge fertility, such as ovarian reserve testing for women and semen analysis for men. They also wanted to learn more about their fertility options following cancer treatment and, specifically, how their treatment may have impacted their fertility. Participants left armed with information and resources, and even Dr. Kondapalli’s personal email address, should they need her clinical expertise at any point in their fertility journey.

To learn more about your fertility options, visit SaveMyFertility.org, or contact us at 1.866.708.FERT (3378).

Did you know that this week is National Infertility Awareness Week (NIAW)? NIAW is a movement that began in 1989 to raise awareness about the disease of infertility and encourage the public to understand their reproductive health. RESOLVE: The National Infertility Association founded this movement to:

• Ensure that people trying to conceive know the guidelines for seeing a specialist when they are trying to conceive.
• Enhance public understanding that infertility is a disease that needs and deserves attention.
• Educate legislators about the disease of infertility and how it impacts people in their state.

Infertility is a disease of the reproductive system that impairs the body’s ability to perform this basic function.  Pediatric and young adult cancer patients undergoing treatment are at high risk of having impaired fertility as a result of their disease or its treatment. Reproductive medicine provides a number of sophisticated options for assisted reproductive technologies (ART) such as egg, embryo, and sperm banking, ovarian tissue cryopreservation, and third party reproduction options (egg, sperm, and embryo donation, and gestational carrier/surrogacy) which help many people achieve parenthood.

Studies show that fertility preservation can bring hope to a patient undergoing cancer treatment, that there will be options and renewed life beyond their cancer diagnosis. Studies also indicate that individuals who do not receive fertility preservation information or treatment options following a cancer diagnosis are more likely to experience profound emotional consequences once they began to navigate family planning. While adoption and third party options make parenting possible, it does not always eradicate the feeling of loss one can suffer as a result of impaired fertility.

In support of NIAW, we ask you to help us and join the movement to increase and protect access to all family building options, and to help make fertility preservation counseling part of comprehensive cancer care in pediatric and young adult patients. For more information about your fertility options, please visit www.SaveMyFertility.org.

There are an estimated 13 million cancer survivors living in the US today, with projected growth to 18 million by 2020. As a result, many healthcare groups and cancer centers are not equipped to address their growing survivor populations. Stemming from this need for quality after care, researchers from the University of Kansas (KU) developed Cancer Survivorship Training (CST), an eLearning solutions provider, to help improve the lives and well-being of cancer survivors by educating and training the healthcare professionals that care for them.

CST online and community courses are designed to increase education, knowledge and skills about survivorship care through theory-based and practical continuing education online curriculum and mobile based learning. The training also provides essential tools for developing and sustaining formal survivorship programs, including oncofertility resources. The Oncofertility Consortium partnered with researchers at KU to help develop CST’s oncofertility course, providing fertility preservation education and options. As studies have shown, fertility is an important factor in many young cancer survivors quality of life following treatment, thus educating patients about their reproductive options is a critical component of comprehensive cancer and survivorship care.

Lead developer of CST, Jennifer Klemp, PhD, MPH, is an Assistant Professor in the Department of Internal Medicine at the KU. Dr. Klemp has a strong interest in patients’ quality of life issues following cancer treatment and is the Director of Cancer Survivorship at KU Cancer Center. She designed CST to deliver continuing education to health care providers actively involved in the care of cancer survivors, including; physicians, oncology nurses, mid-level practitioners, allied health professionals, and practice administrators.

CST emphasizes the importance of post-treatment survivorship care as well as the opportunity for education and prevention of late and long-term effects, including infertility, from the time of diagnosis.  The multi-disciplinary approach provides the healthcare provider with information to care for the needs of cancer survivors from the time of diagnosis and develop skills focusing on essential elements to the delivery of survivorship. To learn more about Cancer Survivorship Training, please visit www.cancersurvivorshiptraining.com or click here.

Below is an excerpt from an article in the University of Colorado Cancer Center Fund E-News featuring Oncofertility Consortium member and Northwestern University alumna, Laxmi Kondapalli, MD, MSCE. To learn more about Dr. Kondapalli, read our three-part blog series, Training the Next Generation in Oncofertility.

By Jerry Sinning

Dr. Laxmi A. Kondapalli is a unique member of the University of Colorado Cancer Center. She joined the University of Colorado faculty in 2011 as Assistant Professor and Women’s Reproductive Health Research Scholar in the Division of Reproductive Endocrinology and Infertility. She came to the Cancer Center after finishing her education in the Northeast – receiving her Bachelor’s Degree from the University of Michigan, her Medical Degree at the University of Vermont College of Medicine, and a Master of Science in clinical epidemiology from the University of Pennsylvania. She completed her residency in obstetrics and gynecology at Northwestern University and fellowship in reproductive endocrinology and infertility at the University of Pennsylvania.

Dr. Kondapalli is the leader of the Oncofertility Program at CU Cancer Center. She does not see patients to discuss their cancer treatment options, but rather their family planning options as cancer survivors. Dr. Kondapalli’s program is one of only a handful in the country that provides an interdisciplinary approach to cancer treatment planning and care that includes clear family planning options for patients, community support services, research, education and outreach…

Read the rest of the article here.

As you may have heard us mention a time or two before, the 3^rd book in the oncofertility series, Oncofertility Medical Practice: Clinical Issues and Implementation, was just released on Amazon.com and is available for purchase. Besides just letting our readers know that important piece of information, we’d also like to give you an inside look into the wealth of knowledge this informative new book contains. To begin, let’s take a look into chapter 13, “Patient Navigation and Coordination of Care for the Oncofertility Patient: A Practical Guide,” by Kristin Smith, Brenda Efymow, and Clarisa Gracia to see the true role of patient navigators in oncofertility management.

Adolescents and young adults facing a new cancer diagnosis need immediate access to oncofertility care in order to maximize their fertility preservation options. In order to do this, patient navigators act as the go-between among a variety of health care providers including oncologists, and reproductive specialists, during a highly stressful and complex time following a cancer diagnosis. According to the authors, “Within the health care setting, the patient navigator bridges institutional and disciplinary boundaries so that cancer patients are able to receive timely information regarding fertility preservation options.” Once cancer patients receive this pertinent information, they are better able to make informed decisions about their course of treatment.

Cancer patients making the decision to preserve their fertility have a limited timeframe to process and make this decision that individuals not facing a cancer diagnosis often do not have to navigate. They do not have the time to flesh out their decision and/or save up for the expensive procedure.  According to the authors, “The average out-of-pocket cost for invitro fertilization (IVF) in the United states is $12,500.” A fertility preservation patient navigator can assist patients by directing them to programs established to defray the cost of fertility preservation, or draft appeal letters to insurance companies, which can result in a savings of thousands of dollars.

Finally, patient navigators act as the “experts” in fertility so that oncologists don’t have to be.  They serve not only the patient, but also the provider, making a complex topic more accessible to healthcare professionals who may be uncomfortable with their level of knowledge in oncofertility, increasing the likelihood that they will not refer patients for consultation.  At Northwestern, Fertility Preservation Patient Navigator Kristin Smith works closely with healthcare professionals, shepherding patients between specialists in oncology, urology, and reproductive endocrinology.  Kristin is also the face of the new Fertility Preservation Patient Navigator website, designed to provide virtual assistance to young patients wishing to learn about their reproductive options in the midst of a cancer diagnosis. To learn more about this website, read our blog, “Introducing the Virtual Patient Navigator for Fertility Preservation,” by Kate Waimey Timmerman, or click here to go directly to the website.

To learn more about the Patient Navigators’ role in fertility perseveration, read, “Patient Navigation and Coordination of Care for the Oncofertility Patient: A Practical Guide,” in Oncofertility Medical Practice: Clinical Issues and Implementation.

Recently, one of our friends and cancer advocates, Jonny Imerman, was featured on CNN Health, in an article entitled “Pairing ‘Angels’ with Cancer Patients,” showcasing the organization he began 10 years ago, Imerman Angels. Imerman Angels is an organization founded in 2003 that carefully matches and individually pairs a person touched by cancer (a cancer fighter or survivor) with someone who has fought and survived the same type of cancer (a Mentor Angel). Caregivers (spouses, parents, children and other family and friends of fighters) also receive 1-on-1 connections with other caregivers and survivors. These 1-on-1 relationships inspire hope and offer the chance to ask personal questions and receive support from someone who is uniquely familiar with their experience.

In 2001, at 26 years old, Imerman was diagnosed with testicular cancer. He underwent an aggressive chemotherapy regime that lasted 5 months only to have the cancer return one year later, this time in his spine. Throughout his cancer treatment, he would walk the halls of the hospital and talk with other young cancer survivors, hoping to make a connection through their shared experience, and offer hope and support. Imerman says, “It was instant friendship. You’re not talking surface level. You’re talking about life and death. My goal was to get in there and motivate patients so that they wanted to jump out of their chemo bed and literally start swinging at this thing.”

Once Imerman was deemed “cancer free,” he was motivated to start engaging the young adult cancer community, and connect patients with other patients or survivors experiencing a similar health crisis. Imerman saw the value in providing a service enabling a cancer fighter to talk to a cancer survivor, who not only had beaten the same type of cancer, but who also was the same age and gender as the fighter. He started reaching out to doctors and hospitals and was referred to other cancer survivors. He collected information from patients, networked with other patients and survivors, and became a cancer matchmaker.

Today, a decade later, Imerman Angels has a database of more than 4,000 survivor mentors. The group tries to connect people living in the same city who can meet in person, but its database also extends overseas, and some pairs communicate via phone and Skype. On average, the group creates five to seven pairs a day and has made more than 8,000 matches in more than 65 countries.

Although Imerman Angels works with all age groups, the majority of their “angels” are between 18-40, a demographic often underrepresented in the cancer care community. According to Jenna Benn, a young woman diagnosed with a rare form of lymphoma when she was 29, “Imerman Angels is incredible in the sense that they’re able to pair you up with someone that looks just like you and that gets it and that can tell you it’s going to be OK. All of a sudden, your reality doesn’t seem so strange.”

Read more about Jonny Imerman and Imerman Angels at CNN Health in, “Pairing ‘Angels’ with Cancer Patients.”

In 2006, the American Society of Clinical Oncology (ASCO) published fertility preservation guidelines for clinicians to follow when treating young cancer patients in response to the increased likelihood of young men and women at risk of losing their fertility due to cancer and its treatment. Nonetheless, studies show that many young cancer patients still are not receiving important information related to their fertility, which would allow them to make informed decisions on their course of treatment.  In a new study in Current Oncology, entitled, “Fertility Risk Discussions in Young Patients Diagnosed with Colorectal Cancer,” authors, A. Kumar, A. Merali, G.R Pond and K. Zbuk performed a retrospective chart review for patients less than 40 years of age with newly diagnosed colorectal cancer between 2000 and 2009, to identify the frequency of fertility preservation discussions.

The investigators reviewed eligible health charts for any indication that a fertility discussion had taken place after initial diagnosis. If there was a documented discussion, investigators then reviewed the charts to see if any follow-up had been done via an oncologist or a reproductive specialist.  Demographic and treatment information was extracted from the charts.

The study identified 59 patients who met all the criteria for inclusion (18-40yrs old, year of diagnosis, stage of cancer, type of treatment, etc). Of those 59 patients, 35 were men and 24 were women. Their average age was 34, and 95% of the selection had received chemotherapy treatment for their cancer.

The study found that only 20 of the 59 patients received fertility counseling and 2 of those 20 did not receive a follow-up discussion with a reproductive specialist. The study also found that age was the most important factor as to whether or not an individual received a fertility discussion. Men and women under the age of 35 were more likely to receive a fertility discussion than those over 35.  Finally, the investigators observed no significant difference in the frequency of discussions after 2006, when the ASCO guidelines were published.

The results of this study demonstrate that the fertility risks associated with colorectal cancer treatment and fertility perseveration options available to newly diagnosed cancer patients, were discussed infrequently.  As we know, fertility preservation options are available; however, unless a patient or their clinical team are proactive about exploring those options, young cancer patients may not be getting the pertinent fertility information they need in a timely fashion. This study highlights the need for more health care professionals to discuss fertility risks with their patients prior to undergoing cancer treatment.

Read, “Fertility Risk Discussions in Young Patients Diagnosed with Colorectal Cancer.”

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.

• National Fertility Hotline (866.708.FERT) to speak with a Fertility Preservation Patient Navigator
• SaveMyFertility: an authoritative resource for adult cancer patients and the parents of children with cancer who want to learn more about preserving their fertility before and during cancer treatment, and protecting their hormonal health after treatment.
• Fertility Preservation Patient Navigator: A website designed to help patients learn more about their options for family building.
• MyOncofertility: A patient education resource provided by the Oncofertility Consortium.

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.