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.

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.

Cancer during pregnancy is rare, occurring in approximately one out of every 1,000 pregnancies, with breast cancer being the most commonly diagnosed. In the past, both healthcare providers and women were often unclear about how to proceed with a pregnancy after a cancer diagnosis without jeopardizing either the mother or the fetus; however, as more women with cancer are deciding to start or continue cancer treatment while pregnant, more information about treating and living with cancer during pregnancy is available.  Oncofertility Consortium member Eileen Wang, MD, an OB/GYN who specializes in maternal fetal medicine (MFM) provides an overview of the management of women who are diagnosed with cancer during pregnancy in, “Pregnancy in Cancer Patients and Survivors,” a chapter in Oncofertility Medical Practice: Clinical Issues and Implementation.

Pregnancy can often delay a cancer diagnosis because some cancer symptoms, such as fatigue, nausea, or anemia, are common during pregnancy and are not considered suspicious. On the other hand, pregnancy can sometimes uncover cancer that has previously gone undetected. For example, a Pap test done as part of standard prenatal care can detect cervical cancer. Similarly, an ultrasound performed during pregnancy can find ovarian cancer that might otherwise go undiagnosed. According to Dr. Wang, “Once a woman receives a diagnosis of cancer during pregnancy, this should trigger a multidisciplinary approach to her care.”

When making treatment decisions for cancer during pregnancy, health care providers should consider the best treatment options for the mother and the possible risks to the developing fetus. The type of treatment chosen depends on many factors, including the stage of the pregnancy; the type, location, size, and stage of the cancer; and the wishes of the expectant mother and her family. Some cancer treatments can harm the fetus, especially during the first trimester, so treatment may be delayed until the second or third trimesters. When cancer is diagnosed later in pregnancy, doctors may wait to start treatment until after the baby is born, or they may consider inducing labor early. In some cases, such as early-stage cervical cancer, doctors may wait to treat the cancer until after delivery.

The prognosis for a pregnant woman with cancer is often the same as other women of the same age with the same type and stage of cancer; however, if a woman’s diagnosis or treatment is delayed during pregnancy, the extent of the cancer may be greater. In addition, because of the amount of hormones produced during pregnancy, they have the potential to affect the growth and spread of some types of cancer. Dr. Wang concludes, “A multidisciplinary approach involving the patient and her support network, the oncology and surgery teams, and the obstetrical and MFM team is required to give the patient the best medical counseling and care and to manage her expectations during the pregnancy regarding her future child in the context of treatment and prognosis.” Read “Pregnancy in Cancer Patients and Survivors.”

Finding out your pregnant can be one of the happiest times in your life. Couple that with a cancer diagnosis and suddenly you’re not only concerned about your health, but that of the new life you are busy growing. Cancer during pregnancy is rare, occurring in approximately one out of every 1,000 pregnancies, and breast cancer is the most common cancer diagnosed during pregnancy. Currently, little research is available to guide women and doctors during this uncertain time.

When making treatment decisions for cancer during pregnancy, the doctor considers the best treatment options for the mother and the possible risks to the baby. The type of treatment given depends on many factors including, gestational age of the baby; the type, location, size, and stage of the cancer; and the decisions of the expectant mother and family. Some cancer treatments can harm the fetus, especially during the first trimester; therefore, treatment may be delayed until the second or third trimesters. When cancer is diagnosed later in pregnancy, doctors may wait to start treatment until after the baby is born, or they may consider inducing labor early.

Unfortunately, the current medical literature cannot answer all the relevant questions for a woman facing a cancer diagnosis during pregnancy. Few oncologists or obstetricians treat more than 2 or 3 patients in this situation in an entire career. The only way to gain the necessary knowledge about cancer found and treated during pregnancy is to gather together experience from various hospitals into one single database. To the benefit of oncofertility, Dr. Elyce Cardonick, a Maternal Fetal Medicine Physician at Cooper University Health Care in New Jersey, is doing just that.

Dr. Cardonick has created a health registry, which collects information about the diagnosis, and treatment of cancer in pregnant women. According to Dr. Cardonick, the information collected is strictly confidential and will help study the effects of a newly diagnosed cancer and its treatment on a concurrent pregnancy. Additionally, the interaction of a pregnancy on the natural history of certain types of cancer will also be studied. Some women have even received chemotherapy during pregnancy and delivered healthy infants. Dr. Cardonick is also interested in including pregnant women with a history of cancer in a separate database. In both studies, the health of the women and their children are followed yearly in cooperation with the patient’s oncologist, pediatrician and obstetrician.

For more information about the pregnancy and cancer registry or to become a participant, please call (877) 635-4499 or visit www.cancerandpregnancy.com. To learn more about the role of OB/GYN in comprehensive cancer care, please read this previous blog.

The oncofertility community aims to educate both oncology and reproductive specialists throughout the United States and across the globe. Over the past five years, the Oncofertility Consortium has done this through an annual conference and monthly Virtual Grand Rounds. This year, we’ve gone one step further in providing clinical education by offering continuing medical education credits (CMEs) to health care providers, including physicians, nurses, and physicians assistants.

This program, called Oncofertility Online, allows health care providers to watch virtual presentations from the 2012 Oncofertility Conference and receive CME credits for their participation. In addition, providers can now watch live or recorded presentations from selected Virtual Grand Rounds (October 2012 – October 2013).

If you are interested in receiving CMEs by watching these recordings, just find a presentation and follow the instructions, which include taking a brief pre-test, watching the recording, and taking the post-test!

Also, you can join the next live Virtual Grand Rounds on Thursday, December 13th, 2012 at 10 AM Central Time on the “Reproductive Impact of Cancer Treatments and Fertility Preservation Options for Cancer Patients” which will be led by Jennifer Hirshfeld-Cytron, MD, MSCI, Assistant Professor, Obstetrics & Gynecology, University of Illinois Medical Center and Mary Ellen Pavone, MD, Assistant Professor, Obstetrics & Gynecology, Northwestern University. View the current list of the 2013 Virtual Grand Rounds here.

The month of November kicks off the sixth annual Movember fundraising campaign to raise vital awareness and funds for men’s health issues, specifically prostate and testicular cancer initiatives.  Every November, men are encouraged to grow out their moustaches for the entire month in support of men’s health. Last year, Movember raised over half a million dollars in Chicago alone and almost $300 million has been raised worldwide since 2003.

This year’s theme of Movember & Sons, reminds us how knowledge is shared and wisdom gets passed down from one generation to the next. This year Movember & Sons focuses on family and generational health — essentially, the knowledge transfer that happens from dad to son — and then, later in life, from son back to dad.

The Movember campaign goals are as follows:

Survivorship: To fund survivorship initiatives that provide information and support for men and their families affected by prostate and other male cancers that helps them make informed decisions and improves their quality of life, include information about fertility preservation.

Awareness and Education: To significantly increase the understanding of the health risk that men face and encourage men to act on that knowledge.

Prostate Cancer Research: To fund catalytic research and clinical trials infrastructure that leads to significantly improved diagnostic and prognostic tests and treatments to reduce the burden of prostate cancer.

Influencing Change in Men’s Health: To fund research that helps to inform health policy and knowledge translation that accelerates improved health outcomes for men.

The funds raised are directed to programs run directly by Movember and their men’s health partners, the Prostate Cancer Foundation and LIVESTRONG Foundation. Together, the three channels work together to ensure that Movember funds are supporting a broad range of innovative, world-class programs. For more information on these programs and other Movember initiatives, please visit the following websites: Prostate Cancer Foundation, LIVESTRONG Foundation, Awareness & Education, and Global Action Plan.

So start growing out those moustaches men, and if you’d like to learn more about your reproductive health after a cancer diagnosis, please visit out SaveMyFertility.org or visit our Virtual Patient Navigator.

More and more healthcare organizations, hospitals, and clinics are interested in learning about fertility preservation and how exactly an oncofertility program is developed. The Oncofertility Consortium holds a 1-day course entitled, Clinic 101, to teach health care providers the necessary steps involved in developing their own fertility preservation program or ways to strengthen their existing program. Nonetheless, we understand that not everyone can make it to Chicago for this course so a few of our Consortium members put together a little “how-to” to help you get started.  In “Setting Up an Oncofertility Program,” in Oncofertility Medical Practice: Clinical Issues and Implementation, authors H. Irene Su, Lindsay Ray, and R. Jeffrey Chang, provide a first hand account of what is needed to build an oncofertility program through their experience developing a program at the University of California, San Diego (UCSD).

First, starting an oncofertility team requires engaging a medical team with various clinical backgrounds: oncologist, reproductive endocrinologist, urologist, patient navigator/nurse, anesthesiologist, supportive oncology, etc., to commit to communicating and working together from the onset of diagnosis through survivorship. Often, the oncologist and reproductive endocrinologist are the ones to assemble the oncofertility team, in part because they are the clinicians involved in the immediate diagnosis and aftermath of a cancer diagnosis in a pediatric, adolescent, or young adult cancer patient.   Collective expertise in managing oncofertility patients is crucial to a successful treatment plan.

Another important aspect of building an oncofertility program is to establish a marketing/communications team to help educate health care providers and medical practices’ about fertility preservation.  It is also imperative for the marketing team to reach the local pediatric and young adult cancer community to encourage young cancer patients and their caregivers to be proactive in their cancer care so they can make informed decisions about their course of treatment.  Websites, grand rounds, exhibits, educational materials, and resources all help to facilitate effective outreach efforts.

Finally, after a clinical team has been established and outreach and marketing efforts put in place, an oncofertility program needs a financial counselor to assist patients in locating resources to defray the cost of fertility preservation. At this time, most fertility preservation treatments are not covered by insurance. This can have a strong influence on a cancer patient’s decision to pursue oncofertility services; however, knowledgeable financial counselors can help direct patients to the appropriate financial assistance programs and help negotiate oncofertility packages in their own institutions.

To learn more about building a fertility preservation program, please read, “Setting Up an Oncofertility Program,” in Oncofertility Medical Practice: Clinical Issues and Implementation.

Today marks the start of the 36^th annual APHON (Association of Pediatric Hematology/Oncology Nurses) Conference in Pittsburgh, PA. The conference is designed for pediatric and adolescent and young adult (AYA) hematology/oncology nurses and allied healthcare professionals who wish to explore ways to enhance their practice. This year’s expanded hematology offerings aim to provide an in-depth knowledge base and understanding of the principles of caring for patients with hematologic disorders. Educational sessions that focus on research, clinical management, and psychological issues are designed to provide attendees with the knowledge and support to enable them to influence pediatric and AYA hematology/oncology nursing and allied healthcare.

On Friday, Oct 5^th from 8-9am EST, Northwestern’s own, Barbara Lockart, MSN, RN, CPNP, CPON, will be presenting, “The Science and Hope of Fertility Preservation.” As the emerging field of oncofertility gains ground, we are thrilled to have a venue to discuss fertility preservation among healthcare providers that serve not only as clinicians, but often as advocates as well. It is imperative for parents and caretakers to understand that cancer treatment, including stem cell transplant, may put children and adolescents at risk for infertility. There is a growing awareness that maintaining fertility is important to families and that infertility is a concern for patients throughout the treatment continuum. Fertility preservation is a rapidly evolving field with lifelong implications for the physical, emotional, and spiritual health of patients. Barbara will examine the state of fertility preservation science, as well as guidelines for determining which patients are appropriate for intervention. She will also discuss the role of the nurse as advocate, educator, and researcher.

Overall, the conference seeks to teach the field about current trends and new information in pediatric and AYA hematology/oncology, as well as learning from shared experiences. It will be an exciting combination of speakers, posters, meetings, and preconference workshops and of course, the issues surrounding social media, technology, and therapeutic boundaries will be a hot topic for discussion. If you would like to attend this exciting conference, please visit the APHON Conference homepage for more information about registration, the agenda, and preconference workshops and education sessions being held.