Virtual Grand Rounds on Pediatric and Young Adult Survivorship

Four times a year, the Oncofertility Consortium hosts its Virtual Grand Rounds series, a public online forum that addresses topics in oncofertility. These clinical, research, and patient presentations engage the diverse oncofertility community to understand broader fertility issues for cancer patients. On November 18, the fall grand rounds, “Clinical Management for Pediatric and Young Adult Cancer Patients and Survivors,” included discussions by two experts in cancer survivorship, Barbara Lockart, APN/CNP, CPON and Karen Kinahan, RN, PCNS-BC.

Barbara Lockart, a pediatric nurse practitioner at Children’s Memorial Hospital in Chicago, Illinois, focused her talk on the survivorship issues of children, as pediatric cancer survival rates are on the rise and approach 80% for some cancers. When dealing with young children, Lockart stressed the importance of having age-appropriate discussions with both children and their parents. While children may not understand the intricacies of fertility, she stressed that even preschoolers have some concept of parenthood. Additionally, it is important for parents to act as surrogate decision-makers independently from their own desires.

Lockart differentiated the long-term effects of cancer care, which begin during treatment and continue throughout the rest of a survivor’s life, from late effects. The late effects of treatment may not begin until years after beginning remission. Some cancer patients may lose fertility immediately during treatment while others may find themselves entering premature menopause years later. Survivors may not be aware of either of these effects on their fertility and Lockart stressed the role of nurses, such as herself, in educating parents and patients.

Lockart frequently works with Karen Kinahan, an experienced clinical nurse practitioner at Northwestern Medical Faculty Foundation and the Survivors Taking Action and Responsibility (STAR) Program who helps childhood cancer survivors transition into adulthood. In Kinahan’s Virtual Grand Rounds presentation, she noted that over time, long-term follow-up for survivors decreases as the late effects of cancer treatment increase. By highlighting case studies and further research, Kinahan showed that infertility is one of the most common chronic medical problems reported by survivors of childhood cancer.

Like previous Virtual Grand Rounds, the full video of the November 2010 seminar is available on the Oncofertility Consortium’s Website. Stay tuned for the next Virtual Grand Rounds: The History of Infertility to be held on February 10, 2012 with Margaret Marsh, PhD and Wanda Ronner, MD. To receive further information about participating in this Adobe Connect session and additional oncofertility events, contact us!

Oncofertility Publication: Fertility Preservation Attitudes and Actions

In 2006, the American Society of Clinical Oncology published recommendations that oncologists discuss fertility preservation with cancer patients. A recent survey, funded by the Oncofertility Consortium’s pilot grant program, investigated pediatric oncologists’ attitudes about fertility preservation and their patterns referring young people for fertility consultations. The results of this study are now available in the Journal of Assisted Reproduction and Genetics.

The article, “Results from the survey for preservation of adolescent reproduction (SPARE) study: gender disparity in delivery of fertility preservation message to adolescents with cancer,” determined that disparities exist between the opinions of oncologists and their behaviors. While most of the responding oncologists agreed that fertility is a significant survivorship issue for them and their patients, less than half of the respondents refer 50% or more of their patients for fertility preservation consultations.

There are also significant differences in referral patterns for male and female patients. While 46% of the pediatric oncologists regularly refer male patients for fertility consultation, only 12% do the same for female patients.  The authors, Tobias Köhler, Laxmi Kondapalli, Amul Shah, Sarah Chan, Teresa Woodruff, and Robert Brannigan, speculate that one barrier preventing oncologists from referring patients to fertility specialists are gaps in their own fertility preservation knowledge.

As discussed previously on this blog, some of the other important barriers to fertility preservation care include time to treatment and the costs of fertility preservation. Since 93% of the respondents were pediatric oncologists, they must also deal with issues regarding underage minors who cannot legally consent to medical treatments. Instead parents must make decisions that may contradict the child’s later wishes. One final issue raised by the authors is that many medical centers do not allow girls under age 18 to undergo many assisted reproductive technologies, such as embryo cryopreservation, due to ethical issues. Together, these barriers highlight the need to develop alternative oncofertility techniques.

Oncofertility Publication: Insuring Against Infertility for Young Cancer Fighters

In 1985, Maryland passed innovative legislation that required health insurance companies to cover the costs of fertility treatments. Since that time 15 U.S. states followed suit and now require insurance companies to cover the costs of egg retrieval, in vitro fertilization, and other infertility treatments for people who have trouble conceiving children. A new paper in the Journal of Law, Medicine, and Ethics by Oncofertility Consortium researchers discusses the barriers to expanding existing infertility mandates to include preventative fertility preservation for cancer patients.

The paper, “Insuring Against Infertility: Expanding State Infertility Mandates to Include Fertility Preservation Technology for Cancer Patients,” describes why cancer patients do not currently fall within the scope of existing mandates. These laws require that patients be diagnosed with infertility before receiving coverage. Authors Daniel Basco, Lisa Campo-Engelstein, and Sarah Rodriguez explain that while different legal and health organizations have their own definitions of infertility, most require that individuals engage in one year of unprotected intercourse without achieving a pregnancy. Since most cancer patients do not fall under that definition, state mandates do not cover fertility preservation.

Fertility preservation mandates may be necessary because patients interested in fertility preservation prior to beginning chemotherapy or radiation may not be able to afford the treatments. Since no health insurance company uniformly covers fertility preservation, cancer patients may need to appeal to their companies in the short time between diagnosis and treatment. Patients may not know how to navigate this complex process, especially while simultaneously dealing with a recent cancer diagnosis, and thus lose the ability to have biological children.

Basco, Campo-Engelstein, and Rodriguez also examine how current infertility mandates could be altered to incorporate the needs of young cancer patients who would like to preserve their fertility. Using the Massachusetts mandate as a model, they discuss the potential legislative routes to providing fertility preservation coverage to cancer patients. Cancer organizations may use these routes to advocate that health insurance companies cover fertility preservation at the state and federal level. In the meantime, patients should utilize their local medical advocates or the national FERTLINE’s patient navigators, who have had success increasing fertility preservation coverage for young cancer patients.

Cancer Care After Katrina

During the summer of 2005, many people were undergoing cancer treatments in New Orleans, Louisiana. Their whole lives had been turned upside down by cancer and they were completely focused on fighting their disease.  That all changed when Hurricane Katrina struck the Gulf Coast in late August.

The hurricane and its aftermath changed the landscape of the entire city of New Orleans, including the healthcare system. Short-term effects included flooding and a loss of electricity to medical centers and clinics while the long-term ramifications of the storm are still being felt. Almost immediately, the state of Louisiana permanently closed Charity Hospital, which cared for most of the city’s uninsured and underinsured residents. Many residents moved away after the storm, including healthcare professionals. At Tulane Medical Center, only 140 out of 617 primary care physicians returned. The healthcare professionals that did return to New Orleans were tasked with caring for a changed population and simultaneously rebuilding their medical system.

The director of the Tulane Cancer Center, Timothy Pearman, PhD, recently discussed the rebuilding process in a presentation at the Robert H. Lurie Comprehensive Cancer Center in Chicago, IL. The center’s patient navigator was first tasked with finding previously diagnosed cancer patients whose treatments had been disrupted by the hurricane, which was difficult given that many people were displaced from their homes and phone lines did not work. One patient who re-started her treatments after a two-month hiatus explained her absence saying, “Cancer is not my biggest problem.”

The center’s patient navigator also used the rebuilding period to increase services for patients. For example, cancer screenings were incorporated into standard care practices throughout the hospital. In addition, all newly diagnosed patients were given an orientation from the patient navigator, a patient care journal, and invited to attend new support groups. To care for the new population of uninsured and underinsured patients, healthcare support staff also learned how to enroll patients in Medicaid and Medicare. Through these activities, the dedicated medical staff converted one of the worst natural disasters in American history into an opportunity to build a new, better, face of healthcare in New Orleans.

The patient navigator at Tulane Cancer Center was integral to the rebuilding efforts by developing and implementing programs in the post-hurricane city. His role was very different from the Oncofertility Consortium’s patient navigator, who walks cancer patients through the options and opportunities for fertility preservation. However, both the patient navigators reduce patients’ barriers to care during stressful times.

So long, Movember!

Congratulations to all of the Mo Bros and Mo Sistas who participated in Movember 2010!  The month quickly flew by and it was great following along many Movember adventures through their Twitter account and website.  Almost half a million people worldwide registered for Movember, bringing in approximately $56.9 million.  While the total fundraising amounts from each region will not be confirmed until next year, the nearly 65,000 Movember registrants in the United States raised over $6.2 million to support the Prostate Cancer Foundation and LIVESTRONG.  The hair-growing movement not only garnered financial support from across the nation and the globe, but also increased awareness among men and their friends and families about the importance of men’s health.

For now, many Movember participants will be sporting clean shaven faces and planning next year’s facial landscape.  The number of people joining Movember is sure to increase and we look forward to being a part of the initiative again.  My husband certainly enjoyed the challenge and I encourage everyone to form a team in 2011.  Please be sure to visit the Movember website to take a glance at pictures, stories, and videos of the past month.  And remember, donations to Movember are accepted all year round, so feel free to share some holiday love at anytime!

Genetic and Environmental Factors of Twinning

The Gemini Twins in the Zodiac

Have you noticed that there seem to be more twins running around these days? If so, you are right. Since the mid-1970s, the rates of twin births have been increasing steadily and not just in the United States. Historians can track twin birthrates as far back as the 17th century using religious records from across the globe. Modern birth reports show that the rates of twin births started to fall around 1900, reached its low point in the mid-1970s, and have since rebounded. While twinning rates vary across time and place, they tend to follow similar trajectories in most countries.

The two different types of twins, fraternal and identical, are created by two very different mechanisms. Fraternal, dizygotic twins form when a woman releases two eggs in a menstrual cycle, which are then fertilized by two sperm. Fraternal twins are as related as any other siblings from the same parents. In contrast, identical twins, also called monozygotic, are formed when a sperm fertilizes a single egg and the early embryo splits to form two genetically identical embryos. Birthrates of identical twins generally stay constant over time, thus, changes in the rates of fraternal twins cause overall fluctuations in twinning.

What is causing the modern day increase in fraternal twin birthrates? Advances in assisted reproductive technology are commonly cited as the primary cause of increased twinning. However, maternal age and genetics also affect the likelihood that a woman will have twins. Research that occurred prior to the popularization of modern day fertility treatments identified that a woman is four times more likely to have twins at age 35 than at age 15. Since that time, the average age of an American woman’s first child increased from 21.4 years to 25 years. European and Asian women have even higher average first-birth ages that vary from 25.9 to 29.4 years old.

Genetics has long been attributed to playing a role in twinning rates. At the turn of the 20th century, physicians discovered familial clusters of twin pregnancies that eventually lead to the finding that the likelihood of giving birth to fraternal twins could be inherited from either a mother or father. Since fraternal twins are born when a woman releases two eggs in one menstrual cycle, only women can express this trait. More recently, research in genetics identified a variety of genes in humans and other animals that may contribute to fraternal twinning, including ones called bone morphogenic protein 15 and growth differentiation factor 9.

Many of these genes are involved in the development of immature eggs, called oocytes. Altered activity of the resulting proteins may cause women to mature multiple eggs per menstrual cycle and have predispositions to fraternal twinning. Interestingly, environmental factors may also affect twin rates. Studies of modern and historical records show that more twins are conceived during the summer and autumn months, which may be attributed to changes in day light or food supply. Conflicting research data also indicate that smoking, folic acid intake, and recent oral contraceptive use may also affect the likelihood of having fraternal twins. Hopefully, further research will determine if suspected environmental factors of twinning are genuine and if they affect the same biological pathways as genetic causes.

Fertility at the 13th Annual Oncology Nursing Conference

In 1998, the Robert H. Lurie Comprehensive Cancer Center at Northwestern University assembled a group of nurses and other oncology experts together for an inaugural oncology nursing conference. Every year since, this successful conference has highlighted emerging topics to oncology nurses from around the Midwest. This year’s 13th Annual Oncology Nursing Conference will be held on Friday, December 3, 2010 at Northwestern University’s Prentice Women’s Hospital.

Oncology nurses act in diverse capacities for cancer patients as educators, navigators, and subject experts. As such, these oncology professionals must continually stay on top of advances in patient care. Megan Mitchell, manager of education programs at the Lurie Comprehensive Cancer Center states that the Oncology Nursing Conference will, “focus on topics that affect patient care and treatment experiences, including the new health care reform act, cancer-related fatigue issues, and managing anemia during cancer treatment.” Additionally, this year’s conference will provide oncology nurses with information on therapies for specific cancers, as well as information on FDA-approved prostate cancer immunotherapy.

The conference will also include a session on fertility with speakers from the Oncofertility Consortium. According to Mitchell, “The panel will provide attendees with unique insights into the decisions and questions that cancer patients encounter when faced with a cancer diagnosis.” Teresa Woodruff, PhD will provide an overview of existing and emerging fertility preservation options for cancer patients. Laurie Zoloth, PhD will discuss some of the complex ethical issues in oncofertility for patients and providers. A third panelist in the session will discuss her personal experiences undergoing oncofertility treatments.

More than 200 nurses are currently registered for the daylong conference, which will provide continuing medical education credits to attendees. While registration for this popular meeting is still open, it is close to reaching capacity so register today!

Giving Thanks

In the spirit of the Thanksgiving holiday upon us tomorrow, I asked people at the Oncofertility Consortium to tell me why they are thankful for fertility preservation.  I received some very thoughtful and meaningful responses:

I am thankful for fertility preservation because it demonstrates a change in cancer care from a strict focus on curing disease to recognition of life after cancer and a respect for a patient’s future plans and family wishes.

I’m thankful that I get the opportunity to meet so many amazing and inspiring people in my job everyday.  I’m also thankful that I get to offer a glimmer of hope to patients who are going through the toughest battle of their lives.

Ironically, I’m a scientist working in oncofertility who developed benign ovarian cysts.  It was reassuring to already be familiar with the options available to me after surgery.  I even saw the Oncofertility Consortium’s pamphlet in my doctor’s office…it was nice to know that we’re getting the word out to other women in my situation.

Oncofertility allows researchers to affect patients today, ensures that current cancer patients may one day have biological children, and gives hope to survivors who lost their fertility that current cancer patients are being informed of their options.

I am thankful for fertility preservation because it allows me to apply my basic science training to a much needed clinical area.  It is such a good feeling to know that we are working to translate our work at the bench to help those in need restore their reproductive function and have a chance to have a biological family.

As for myself, I am thankful for fertility preservation because of the community it creates among scientists, health care professionals, cancer advocacy and support groups, and cancer patients and survivors.  The work of the Oncofertility Consortium spans geographic, socioeconomic, and cultural boundaries to respond to an urgent need in cancer care so as to improve the quality of life for cancer patients and their families.  I am grateful for everything that I have learned through the Oncofertility Consortium and for all of the hard-working and hopeful individuals who are on our team.  Thank you for reading our blog and sharing this information with those around you!  Please feel free to leave a comment below to tell us why you are thankful for fertility preservation and how the Oncofertility Consortium has affected your life this past year.

Have a healthy, safe, and happy Thanksgiving!!!

Empowering Patients Through Education

Over the past decades, the patient-doctor relationship has changed dramatically in the United States. This may be due to changes in the amount of time that patients spend with their doctors and the rising costs of health care. Consequently, patients often spend more time educating themselves on their health outside of the doctor’s office. While the Internet is full of health care resources, it is important that the public understands which websites are reliable and have access to accurate information.

One website that provides an authoritative medical voice is Patient Power, which educates the public on a large number of health care topics through audio interviews with scientific and medical experts. Andrew Schorr founded patient Power in 2005, “to empower patients and help them get the best care to treat their illness and to go on with a high quality of life.” A 14-year leukemia survivor himself, Schorr states that he wants to, “help patients be in a strong position to ask questions and have an educated discussion with their provider.”

Patient Power performs informational interviews with help from leading medical centers and advocacy groups. These recordings are then freely disseminated on websites and social media outlets. The website posts interviews on topics that range from Acute Leukemia to Weight Management, and recently covered Oncofertility with a joint expert and patient interview.

In a webcast that was aired on November 18, Dr. Teresa Woodruff discussed some of the established and experimental treatments in fertility preservation for children and adults. In the interview, Schorr also talked with Holly, a two-time cancer survivor and fertility preservation patient who relayed her experiences undergoing egg retrieval and embryo banking with her husband. While the Internet may contain inaccurate or incomplete medical information, websites like Patient Power providing expert information for the public so they can actively participate in the health care decision-making process with their physicians. What authoritative sources do you use to gain information about your health?

Reducing Economic Disparities in Cancer Diagnosis and Survival

Socio-economic status plays a profound effect on cancer diagnosis and survival rates. For example, breast cancer patients of low socio-economic status have significantly reduced survival rates compared to women from more privileged backgrounds. This increased mortality is partially caused by reduced screenings and delayed cancer diagnoses.

Since 1990, the Center for Disease Control (CDC) has instituted a series of programs to help reduce cancer disparities for breast, cervical, and colorectal cancers. Colorectal cancer is the second-leading cause of cancer-related deaths in the US, with similar mortality rates between men and women. Through the Colorectal Cancer Control Program, more than 25 states currently provide free screenings and follow-up care to uninsured or underinsured people in an effort to increase colon cancer screening rates to 80% for people over age 50.

Another CDC initiative, the National Breast and Cervical Cancer Early Detection Program provides free breast exams, mammograms, pap tests, and pelvic exams to qualified women in all 50 states. The program additionally covers diagnostic testing for abnormal exams. While the federal government funds the colorectal, breast, and cervical cancer programs, they are implemented at the state level so men and women can receive service tailored for their region.

What happens is a person is diagnosed with one of these cancers? Both CDC programs can refer patients to free or low-cost treatment programs. A representative at the Illinois Breast and Cervical Cancer Program recently stressed the speed at which these referrals are made, since time is incredibly important after a cancer diagnosis. People who were diagnosed outside of these programs but may not be able to afford treatment can also use the services for referrals to low-cost treatment opportunities.

Cancer screening programs resulted from research showing that economic status plays a large role in cancer diagnosis and survival. Similarly, the Oncofertility Consortium is assessing the economic factors in fertility preservation decision making in order to reduce barriers to treatment. While free screenings for colorectal, breast, and cervical cancer are now available, many people may not be aware of these programs. Get the word out and play your own part in reducing cancer disparities!

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