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).

May is National Skin Cancer Awareness Month and this time of year brings skin, our body’s largest organ, into focus as the  weather warms up and people spend more time outside in the sun. Skin cancer is sometimes referred to as a “lifestyle disease” because its occurrence can be dramatically reduced through behavior modification, education, and early detection. Learning more about the disease and how it can be easily prevented and/or treated if found early, will hopefully inspire our readers to make some positive lifestyle changes and reduce their risk of skin cancer.

What is skin cancer exactly? Skin cancer is defined as the uncontrolled growth of abnormal skin cells. It occurs when unrepaired DNA damage to skin cells, most often caused by ultraviolet radiation from sunshine or tanning beds, triggers mutations, or genetic defects, that lead the skin cells to multiply rapidly and form malignant tumors. Cancer of the skin is often divided into two categories: non-melanoma and melanoma. The American Cancer Society estimates there are well over 1 million unreported cases of non-melanoma (basal cell or squamous cell) cancers annually in the United States. Melanoma, the more-serious form of skin cancer, is the most common form of cancer for young adults 25-29 years old and the second most common form of cancer for young people 15-29 years old. Furthermore, women aged 39 and under have a higher probability of developing melanoma than any other cancer except breast cancer, and up until age 40, significantly more women than men develop melanoma.

Current statistics show that skin cancer is the most common type of cancer in the United States, as well as some other countries, and unfortunately the incident rate continues to rise.  Although the frequency of melanoma and non-melanoma skin cancer diagnoses indicate that this disease remains a significant health concern, it’s important to note that, research and public awareness campaigns are promoting prevention and early detection of skin cancer. Staying informed with the latest news on prevention and screening are important steps in reducing your risk of developing skin cancer. Here are a few tips from the Skin Cancer Foundation for reducing your skin cancer risk:

• Seek the shade, especially between 10 AM and 4 PM.
• Do not burn.
• Avoid tanning and UV tanning booths.
• Cover up with clothing, including a broad-brimmed hat and UV-blocking sunglasses.
• Use a broad spectrum (UVA/UVB) sunscreen with an SPF of 15 or higher every day. For extended outdoor activity, use a water-resistant, broad spectrum (UVA/UVB) sunscreen with an SPF of 30 or higher.
• Apply 1 ounce (2 tablespoons) of sunscreen to your entire body 30 minutes before going outside.
• Reapply every two hours or immediately after swimming or excessive sweating.
• Keep newborns out of the sun. Sunscreens should be used on babies over the age of six months.
• Examine your skin head-to-toe every month.
• See your physician every year for a professional skin exam.

In April, the Oncofertility Consortium hosted a Virtual Grand Rounds with Clarisa Gracia, MD, MSCE, entitled, “Case Studies in Oncofertility,” in which she discussed five theoretical young cancer patients and how oncofertility could be incorporated into their medical care. These patients included pediatric girls, adolescents, and young adult women with a variety of diseases including lymphoma, leukemia, ovarian, breast, and bone cancer. Dr. Gracia’s talk not only included the clinical recommendations for each of these patients, but also the scientific evidence that supported such suggestions. If you didn’t watch the live Rounds you can view a recording of the talk, with an option to obtain CMEs from the recording.  Following are some of the questions and answers posed to Dr. Gracia that she was able to answer after the Rounds ended.

Question: Are there differences in the impact of chemotherapeutics on primordial vs. growing follicles?

Answer: There is destruction of both growing follicles and primordial follicles. The article, “How do chemotherapeutic agents damage the ovary?” by Morgan, Anderson, Gourley, Wallace, and Spears provides a good review of some of the evidence. Briefly, chemotherapeutics may affect a variety of cell types within the ovary. A reduction in primordial follicles may be caused by direct damage by chemotherapeutics. However, chemotherapy also damages growing follicles, which increases recruitment of the primordial pool of follicles to begin growing. This increased recruitment also means that chemotherapy may indirectly decrease primordial follicle numbers.

Question: How do you build relationships with oncologist to ensure they are willing to start the fertility preservation discussion with patients?

Answer: It is important to reach out to oncologists and oncology nurses and let them know that you provide fertility preservation services for their patients. Provide flyers, letters, and make an effort to give presentations to oncology groups in your area. Please refer to the oncofertility website for more information.

Question: Are there functional analyses after uterine or whole body irradiation to determine if the uterus will be able to carry a healthy growing fetus to term?

Answer: The studies have focused only on uterine size and blood flow post radiation exposure, not functional in vitro studies.

Question: What do you/your patients consider a good number of oocytes? If a patient doesn’t get enough after one stimulation protocol, will you allow them to delay treatment in order to do another?

Answer: That is a difficult question and depends on a patient’s age and egg quality. We generally think getting more eggs is better than few eggs, but there is no guarantee of pregnancy even with many eggs. Ideally, a patient gets at least 10 oocytes in an egg retrieval. It is reasonable to pursue another stimulation cycle only if the oncologist feels comfortable delaying therapy.

Join the next Oncofertility Virtual Grand Rounds in June on the topics, “Sexuality After Cancer” with Dr. Kamaljeet Murthy and “Hormonal impact of cancer treatment and management of hormonal symptoms in female cancer survivors” with Dr. Catherine Stika.

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.

Since the 1990s, researchers have published conflicting results about the connection between cancer risk and fertility drugs. As a result, there has been a lingering concern among women that using fertility drugs may increase their risk for later developing hormone receptor positive cancers. Hormone receptor positive tumors consist of cells that express receptors for certain hormones such as estrogen or progesterone, but are most commonly known as estrogen receptor tumors. These types of tumors depend on the presence of estrogen in order to grow and spread throughout the body, making the risk for gynecologic cancers cause for concern in some women undergoing IVF treatment.

Fertility drugs have come under scrutiny because they stimulate hyper-ovulation, meaning they cause a woman’s body to produce more eggs. They have been linked to certain gynecologic cancers, such as breast and ovarian cancer. One reason research published in the 1990s may have suggested a link between fertility drugs and cancer risk, is due to the drugs that were being prescribed 20 years ago. Researchers have also blamed the mixed nature of the findings on the studies’ relatively short length, or on including women who have not given birth as they are known to have an increased risk of some cancers.

New research, however, suggests that using fertility drugs does not have an impact on your risk for developing ovarian cancer down the line. Lead author of the study and clinical fellow in the Division of Reproductive Endocrinology at the Mayo Clinic in Rochester, Minnesota, Dr. Albert Asante and his colleagues gathered medical information on 1900 women from an ongoing ovarian cancer study at the Mayo Clinic. The researchers compared 1,028 women with ovarian cancer to 872 women of similar age who did not have cancer. As reported in Fertility and Sterility, approximately 24 percent of the women who did not have ovarian cancer reported having used fertility drugs, while roughly 17 percent of women who had ovarian cancer had used fertility drugs.

The researchers took into account factors that can influence the risk for ovarian cancer, such as age and use of the birth control pill, and found no difference in cancer rates between the groups. Dr. Asante looked specifically at whether women in the study who reported being infertile- whether or not they had taken fertility drugs – had a greater chance of developing ovarian cancer, and found no added risk. He said one explanation for the result is that most of the women in his study had infertility issues, but eventually became pregnant. According to Dr. Albert Asante, “One important message [from this study] is women who need to use fertility drugs to get pregnant should not worry about using these fertility drugs.”

To read more about this new study, click HERE for the full text. To learn more about your reproductive options when faced with a cancer diagnosis, please visit www.SaveMyFertility.org.

Wouldn’t it be great if insurance companies were required to provide coverage for medically necessary expenses for standard fertility preservation services when a medical treatment may directly or indirectly cause infertility to an enrollee or insured? California Assemblywoman Sharon Quirk-Silva, thinks so too and recently introduced CA bill AB 912, which proposes to do just that.  On behalf of the Oncofertility Consortium, we support bill AB 912, and we encourage others to learn more about the positive implications of this bill as well.

AB 912 provides for insurance and HMO coverage of fertility preservation services when future fertility will be put at-risk by treatment of a disease such as cancer, sickle-cell anemia or lupus. While the numbers of people who will need the services is likely to be small, for those people facing a life-altering disease which could require chemotherapy or radiation or both with a high potential for causing infertility after treatment, this coverage could make all the difference. People who have the option for these services score much higher on quality of life measures after treatment. Probably more importantly is that by providing this coverage, the patient is able to keep focus on what would be the best therapy for their disease, without having to worry about the effect on their future fertility.

Mandating insurance coverage for fertility preservation will transform the quality of life for cancer survivors. Fortunately, the relatively small numbers of people in their reproductive years who will need this care will only minimally impact insurance premiums when spread out amongst all insured persons. Without insurance coverage, patients may forgo fertility preservation, which may result in compounded costs for the survivor years later when trying to build a family.

While the cost to preserve fertility is relatively modest, most patients are unable to afford this unexpected out-of-pocket expense, especially at a time when they may be facing other significant cost pressures surrounding the treatment. A short time frame between diagnosis and treatment that does not allow time to seek appeal when insurance companies deny fertility preservation coverage further complicates this.

As survivorship for a typical cancer improves, the ability to bear children after therapy is an understandable and expected concern. For some patients, cancer treatment options may be decided based on its risk of fertility loss rather than fully focusing on its effectiveness to cure the cancer. AB 912 will provide fertility preservation insurance coverage for patients undergoing treatments known to compromise fertility. This is an equitable and cost-effective solution to a foreseeable harm from medically necessary treatment. Please support bill AB 912, ensuring fertility preservation coverage for those who may lose their reproductive potential through no fault of their own.

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…

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.

By Cathryn Smeyers

This is the final installment in a two-part blog story featuring Oncofertility Consortium member, Gregory Dolin, MD, JD, focusing on his recent Oncofertility Virtual Grand Rounds presentation. To read the 1^st blog, click here.

In his presentation, Dr. Dolin highlighted some of the problems that exist within the legislative process that make it even harder for scientific issues to be successfully conveyed to lawmakers.  According to Dr. Dolin, the hearing process, which many assume involves full congressional engagement, the presentation of relevant information and lively debate, is often more like “kabuki theater.”  Only invited participants are allowed to testify, hearings are rarely and sparsely attended, and the chairman has a nearly complete control of the agenda and the text of any proposal discussed.  Furthermore, after the hearing, much work is done by the staff in secret, the House Rules Committee can amend or rewrite the bill in any way it sees fit, floor debates may be very limited, and Conference Committees once again have the opportunity to amend or rewrite the bill outside of public view.

So what’s the solution?  How can we ensure that the people in control of federal dollars are scientifically literate and well informed?  Dr. Dolin proposes the creation of an objective body of scientific advisors charged with evaluating all proposed bills and advising Congress of the likely effect of legislation.  This body would also have to solicit scientific input from members of the public, which would allow scientists to register their opinions.  Models of this currently exist in the form of the Congressional Budget Office and the late Office of Technology Assessment. The creation of such an office, however, is just a proposal, and we are unlikely to see it realized in the near future.  In the interim, Dr. Dolin advises that scientists involve themselves in the legislative process and do what they can to ensure that Congress hears and understands complex scientific research.

The Oncofertility Consortium whole-heartedly agrees with Dr. Dolin, and we feel that Dickey-Wicker underscores the necessity for scientists to not only have a voice in the political sphere but to be adept communicators who can appropriately relay complex scientific information to a lay audience.  We hope our blog, for example, allows us to relay scientific research in a way that is both comprehensible and meaningful to our readers. Repropedia (www.repropedia.org) is another tool that we use to clearly communicate scientific information.

Repropedia is a website that is edited by scientists across the globe and serves as an authoritative source of definitions for reproductive health terms. This site directly interacts with other website by providing pop-up definition boxes, so a reader gets the information in context.  Our blog serves as the perfect example!  Of course, we couldn’t let Dr. Dolin go without contributing to this valuable resource. He kindly agreed to contribute a video definition of the term “parthenote,” and we sincerely hope that the general public (Congress included!) will benefit from his explanation.  In the end, it is exactly this kind of clear communication by the scientific community that will educate the public and inform public policy.

Click here to see Dr. Dolin’s Repropedia definition.  Click here to read the chapter he co-authored in the second Oncofertility book, Oncofertility: Ethical, Legal, Social, and Medical Perspectives, entitled, “Medical Hope, Legal Pitfalls: Potential Legal Issues in the Emerging Field of Oncofertility,” and look for his contribution to the fourth Oncofertility book due out later this year entitled, Oncofertility Communication: Sharing Information and Building Relationships across Disciplines.