Yesterday we posted a blog about the 36^th annual APHON (Association of Pediatric Hematology/Oncology Nurses) Conference being held right now in Pittsburgh, PA.  It’s an exciting time for us because not only do we have a member of the Oncofertility Consortium presenting on fertility perseveration at the conference (Barbara Lockart, MSN, RN, CPNP, CPON), but also because APHON has recently released a position statement entitled, Fertility Preservation for Pediatric and Adolescent Young Adult (AYA) Cancer Patients. The strides that have been made since the Oncofertility Consortium’s inception in 2007 are truly on display here and we couldn’t be more excited!

Nurses are often the thread connecting young cancer patients and their families to pertinent information that can sometimes be overlooked in the urgency of a cancer diagnosis and subsequent treatment planning process.  As studies have shown, fertility issues and options are often not addressed at diagnosis for several reasons (age of the patient, diagnosis, gaps in provider knowledge, etc.); however, several studies report childhood and AYA cancer patients are interested in learning about fertility preservation options, including those that are experimental.

It is APHON’s position that, “discussions regarding fertility preservation occur with all patients and families as early in the treatment trajectory as possible (prior to treatment whenever possible). These discussions should continue throughout treatment and follow-up care as patients continue to grow and develop.” Currently, many pediatric facilities do not have the resources available to offer fertility preservation in their institutions, but they have the option of partnering with reproductive or adult centers that provide fertility preservation services. Collaboration between centers is vital for a successful treatment experience for patients, families, and their healthcare team. The Oncofertility Consortium provides both patients and health care professionals with resources for locating established fertility preservation centers, as well as providing a national fertility hotline, FERTLINE, answered by a Fertility Preservation Patient Navigator who can provide you with additional information.

In addition to that, pediatric oncology nurses’ expertise may be needed to provide adult healthcare providers with information about the unique psychosocial and developmental needs of childhood and AYA oncology patients and their families. They can also be a great resource for patients and families who may not have enough information independently to inquire about specific issues such as cost, insurance coverage, success rates, and storage concerns.

As evidenced by their position statement, APHON is supporting the Oncofertility Consortium’s quest to ensure that all patients, providers, and caregivers have the ability to make informed decisions regarding fertility preservation in the face of a cancer diagnosis. Please take a moment to read, Fertility Preservation for Pediatric and Adolescent Young Adult (AYA) Cancer Patients, and learn more about fertility preservation resources nationwide.

From left: Irene Su, Laxmi Kondapalli and Maureen Prewitt

This is the final installment in a 3-part blog series featuring Oncofertility Consortium member, Laxmi Kondapalli, MD, MSCE.  In this post, we take a look at her current position at the University of Colorado and her latest research endeavors. To read the 1st  blog, click here and for the 2^nd post, click here.

Mid-2011,  while Laxmi was finishing up her clinical work at the University of Pennsylvania (Penn), she was recruited by the University of Colorado in Denver to start the first fertility preservation program in the mountain region. Laxmi accepted with the goal of creating a comprehensive wellness program at Denver and in September of 2011, she began working at her current position as an Assistant Professor of Obstetrics and Gynecology.

Laxmi is working on a women’s reproductive health research grant, meaning that 75% of her time is protected for research, and 25% of her time is reserved for clinical care.  According to Laxmi, “Given that I do clinical research and that my area of interest is fertility preservation, there’s a lot more fluidity in the composition of my time because so many of my patients that I see clinically, I also try to recruit into my research protocols.” Even though the University of Colorado is a part of the National Physicians Cooperative (NPC), they had yet to have any patients who had undergone ovarian tissue freezing. Laxmi made it her mission to make fertility preservation a big presence on the university campus. She works with the cancer center, breast oncology unit and she has special privileges at the children’s hospital working with the pediatric team on fertility.  Laxmi explains, “I want to make sure that fertility preservation is a component of care for all patients.”

Currently, Laxmi is involved in several research projects for men and women including; Reproductive Outcomes in Cancer Survivors: Examining Perinatal Outcomes in the Women with a History of Cancer; Semen Parameters in Adolescent Male Cancer Patients; and Reproductive Potential in Young Breast Cancer Survivors: Interplay between Markers of Ovarian Reserve, Metabolism and Tumorogenicity. However, her research is not just science based, it has an outreach component as well. In Fall 2012, in conjunction with Fertile Action and the Oncofertility Consortium, Laxmi is launching the PACT program (Parenthood After Cancer Treatment), which is a patient and provider outreach program on fertility preservation. Patients and providers spend a day learning about the long term consequences of cancer treatment, fertility preservation and where to go to access it.

In sum Laxmi says,  “I stayed in academics because I like academics and because I am the product of great mentorship. I hope to inspire residents and fellows that I work with in the same way that I was inspired.”

The medical community has known for a very long time that chemotherapy is disruptive to reproductive function and that young women undergoing chemotherapy have a greater chance of entering early menopause. In the 1970s, two articles were published acknowledging these two issues: Depletion of Growing Follicles and Premature Menopause, indicating a growing awareness among the scientific community that fertility preservation needed to be addressed. Since then, we have seen a steady increase in fertility preservation programs across the United States and the world.

Over the last 30 years in the United Kingdom, the survival rate for young adults with cancer has increased dramatically resulting in the current statistic that 70% of young people with cancer will survive 5 years or more after their last treatment.  In addition to that, the incidence of pediatric cancer has increased, requiring a closer examination of fertility impairments as a result of cancer treatment as well as preventative measures that can be performed prior to treatment to protect reproductive function. Over the last 10 years, publications in the UK addressing fertility preservation have more than doubled demonstrating a growing interest in this sub specialty, oncofertility.

A recent visitor to the Oncofertility Consortium, Dr. Richard Anderson, Professor of Clinical Reproductive Science at the University of Edinburgh, spoke at the Oncofertility  Virtual Grand Rounds yesterday and discussed how the fertility preservation program at the Queens Medical Research Institute is administered. Similar to the Oncofertility Consortium, Dr. Anderson states that good colleagues from diverse backgrounds are needed to ensure that a program runs smoothly. A set of criteria is also needed to determine which individuals are good candidates for fertility preservation. This is especially important in Scotland, where the resources (i.e., number of fertility treatments available) are limited by the federal health system. A functioning registry, which requires an effort from both the provider and the patient, is required to keep the links of communication open to ensure that the tissue is being properly handled.

Currently, the fertility preservation program in the United Kingdom does not have an organization similar to the National Physicians Cooperative, which Dr. Anderson argued would only benefit the success of the program going forward.  Through his visit we were able to share our experiences in this burgeoning field and gain insights into how we can work together on this intractable problem in an effort to address fertility preservation globally. A video of Dr. Anderson’s presentation entitled, “Fertility Perseveration: Where We Are, and How We Got Here,” is available now.

On May 16^th, Richard Anderson, PhD, MD will be delivering an Oncofertility Virtual Grand Rounds entitled, “Female Fertility Preservation in Practice: Where We Are, and How We Got Here.” Dr. Anderson is a consultant at the Royal Infirmary of Edinburgh and a Professor of Clinical Reproductive Science at the University of Edinburgh. He specializes in infertility and reproductive endocrinology with particular interests in disorders of ovulation in women and male reproductive function. His presentation is a highly anticipated event at the Consortium and asks us to reflect on the impact the Oncofertility Consortium has had on fertility preservation in cancer patients over the last five years.

One of the many important resources provided by the Oncofertility Consortium is the National Physicians Cooperative (NPC): a nationwide network of Fertility Preservation sites that are strongly aligned with cancer centers serving children, men and women. The NPC was built to teach fertility specialists about the specific needs of cancer patients. These needs include an immediate need for fertility preservation in a short amount of time, patients that include adolescents and children, and treating individuals who may experience fertility complications from the cancer itself or due to treatment.  NPC sites are trained to provide individualized consultations and interventions for fertility preservation options. They also advance clinical care by participating in multicenter studies designed to improve fertility preservation methods and care delivery. When patients choose ovarian tissue banking at NPC sites, they can also contribute small portions of human ovarian tissue to a national ovarian tissue repository, providing an important resource for translational research that to develop new fertility preservation techniques for cancer patients. While the Consortium originally aimed to establish 4 NPC centers throughout the United States, today, patients can be referred to one of over 55 sites. Based on individual site reporting, the NPC provides more than 2,700 oncofertility consultations per year, showing the significant need for this growing team.

Another important resource the Oncofertility Consortium provides is the Fertline: a National Fertility Preservation phone line (1.866.708.3378 (FERT)). The Fertline was established to meet the needs of NPC patients and providers whereby they can call or contact us via our website (http://myoncofertilty.org) and receive personalized responses depending on their specific cancer and the resources available. Patients are triaged as appropriate for consultation and fertility preservation treatments in their own locale. The Patient Navigator is responsible for taking these calls and helping patients across the country navigate through treatment. On average, our Patient Navigator consults with approximately 30 newly diagnosed cancer patients, primarily women, each month.

To learn more about fertility preservation and oncofertility then, now and going forward, please watch Dr. Richard Anderson’s Oncofertility Virtual Grand Rounds, May 16^th at 10am Central Standard Time.

Addressing fertility preservation with a newly diagnosed cancer patient may seem like a daunting task for a healthcare provider, but studies show that cancer survivors who did not learn about fertility preservation options were more likely to feel distressed by this, impacting their quality of life. Whether or not an individual pursues fertility preservation, patients want to know what their options are so they can make an informed decision regarding their future fertility. So why do many healthcare providers fail to discuss fertility preservation with their patients after diagnosis?

Many physicians face communication challenges when discussing fertility preservation with their patients. These barriers can be related to either a physician’s own personality or relationship with the patient, but oftentimes it stems from a lack of knowledge about fertility preservation options and referral sources. Although male fertility preservation is pretty straightforward, female fertility preservation isn’t. This is a particular problem with emerging technologies that are still experimental as a healthcare provider may not know all the available options well enough to comfortably speak about them with patients.

Physicians also struggle with discussing fertility preservation with patients that have low health literacy, patients from cultures or religions that do not support assisted reproduction or patients who do not speak English.  Patient and provider interactions are already complex, but these factors make the conversation particularly challenging. In the event of a non-native speaker, even when an interpreter is used, it’s unclear what is “lost in translation” between patient and provider and how much has been effectively communicated.

Finally, one of the most delicate issues a physician faces is broaching fertility preservation with a patient who has a poor prognosis or is in the late stages of cancer. Healthcare providers have expressed their discomfort with telling a patient they have a low survival rate and broaching fertility preservation in the same conversation. The dynamic involved with giving someone a grim diagnosis and then changing gears and asking them whether or not they’ve ever thought about having children, is complicated in the best case scenario.

These are only a few examples of the challenges physicians face when discussing fertility preservation with a patient. Other factors include the age of the patient at the time of diagnosis and a physician’s attitude toward delaying treatment, particularly in the case of female patients. Understanding these challenges is important to overcoming them.  The Oncofertility Consortium identifies such barriers, works to find solutions, and then promotes those solutions to the clinical community through the National Physicians Cooperative.  To learn more about this topic, please read “Healthcare Provider Perspectives on Fertility Preservation for Cancer Patients,” by Gwendolyn P. Quinn, PhD and Caprice A. Knapp, PhD in Oncofertility: Ethical, Legal, Social, and Medical Perspectives.

Children’s Memorial Hospital is expanding its fertility preservation services to its young cancer patients and their families. In February, Marleta Reynolds, MD, Chief of Surgery, and Julian Schink, MD, from Northwestern Memorial Hospital, performed the hospital’s first ovarian harvest on a female patient who is about to undergo aggressive chemotherapy and radiation.

“I am confident that this groundbreaking surgery and techniques now in research stages will one day make it possible for young women who risk infertility from cancer treatments to have children of their own,” said Reynolds.

Children’s Memorial is a member of a nationwide Oncofertility Consortium at Northwestern University which is supported by a grant from the National Institutes of Health. This consortium of fertility experts, endocrinologists and researchers are testing to see if a harvested ovary can be fertilized for reproduction. Young cancer patients choosing ovarian harvest surgery are participating in this important research.

“Thinking about a young girl’s future fertility at the time of a cancer diagnosis is an important part of the cutting edge care offered by Children’s Memorial Hospital,” said Teresa Woodruff, Ph.D., Chief of the Division of Fertility Preservation at the Feinberg School of Medicine and Director of the Oncofertility Consortium.

Barbara Lockart, APN, MSN, who is a nurse practitioner in the hospital’s Long Term Survivor’s STAR Clinic, has been counseling young patients for several years on their fertility options. “By doing this procedure at Children’s Memorial, we are showing our commitment to fertility preservation,” said Lockart. “For years we have been offering male patients the option of banking their sperm. Now we are in a position to offer young female patients the option of harvesting their ovaries. The research holds promise that these girls will be able to start a family when they are ready.”

Lockart says fertility preservation can also apply to patients treated in other disciplines, such as patients with genetic disorders that might cause infertility and rheumatology, that also use medications which might result in infertility.

Children’s Memorial is one of the top pediatric hospitals in the country according to rankings in U.S. News & World Report. It is the pediatric teaching hospital of Northwestern University Feinberg School of Medicine. In June of 2012 Children’s Memorial will be moving to its news hospital in downtown Chicago, Ann & Robert H. Lurie Children’s Hospital of Chicago.

FAMILY TRAVELS TO RHODE ISLAND FROM OHIO FOR FERTILITY PRESERVATION FOR TWO-YEAR-OLD GIRL

Having a child diagnosed with cancer is a parent’s worst nightmare.  But juxtaposing the knowledge that your child may survive, and then may never be able to naturally have children of her own, can be heart-wrenching.  On Tuesday, March 1, 2011, Jared Robins, MD, a reproductive endocrinologist and leader of the Program for Fertility Preservation at Women & Infants Hospital, cryopreserved an ovary of a two-year-old girl from Ohio who is battling a stage four neuroblastoma.  This surgical procedure, which was performed at Hasbro Children’s Hospital, offers the hope of fertility when this patient survives her treatment.

Once their daughter was diagnosed, the Ohio family met with oncologists from the Cleveland area and were told there was nothing that could be done to preserve their daughter’s fertility throughout her cancer treatment.  Their own research led them to Dr. Robins.

While the family is choosing to remain anonymous, the father said, “Time was of the essence, as we only have a three- to four-week window before our daughter will have her stem cell transplant, destroying her fertility.  Dr. Robins called us back within 45 minutes of our initial call.”

Dr. Robins then contacted Jennifer Welch, MD, pediatric oncologist at Hasbro Children’s Hospital and co-principal investigator with Dr. Robins of a unique program that offers ovarian preservation to children who undergo cancer treatment.  From there, a multidisciplinary team that also includes the Division of Pediatric Surgery at Hasbro Children’s Hospital set out to organize the family’s travel to Rhode Island and to coordinate a laparoscopic procedure to harvest the girl’s ovarian tissue.  With the help of the Hasbro operating room staff and in close collaboration with the Providence Ronald McDonald House, the child underwent the surgical procedure the morning after her arrival, and the family could travel back to Cleveland the next morning.

The father commented, “We have been so impressed by the entire team.  We wanted the experts, but we also wanted someone who would make us feel comfortable.  We have felt that here.”

It is estimated that 1 in 500 children will be diagnosed with a form of childhood cancer.  With the use of aggressive treatment modalities, more than 80 percent of these children will be cured. Therefore, many of these children and their parents are looking beyond the cancer at important quality of life issues including future children.

Unfortunately, some aggressive treatments for cancer can render a child infertile.  The likelihood that this will occur depends on the child’s age, type of cancer and treatment plan.  The Program for Fertility Preservation at Women & Infants offers options for fertility preservation in children, in coordination with the Division of Pediatric Hematology/Oncology at Hasbro Children’s Hospital.

This program offers an experimental procedure that enables physicians to freeze tissue from the ovaries before they are damaged.  Once the child is cured of her cancer and ready to have children this tissue may be transplanted back into her body or eggs may be extracted from the tissue for in vitro fertilization.

These experimental studies are being conducted with the support of the National Institute of Health’s Oncofertility Consortium, with the hope of determining how best to freeze the ovarian tissue of young girls.  The Women & Infants /Hasbro site is one of only a few in the country and the only one in New England to be enrolling children.

Last year, the pediatric oncofertility team at Women & Infants and Hasbro Children’s hospitals completed a surgical procedure on a 17-month-old Rhode Island girl who is battling cancer.  This is the youngest known patient to undergo pediatric fertility preservation under the Oncofertility Consortium.

Dr. Robins said, “Freezing part of a child’s ovary to preserve her fertility 20 or 30 years down the line is a research procedure.  Although we are far from knowing all of the facts about its efficacy, we do believe that we can give a hope of fertility to these young cancer survivors.”

Each year, the pediatric oncology program at Hasbro Children’s Hospital sees approximately 60 new patients diagnosed with cancer. As a treatment plan is developed, sometimes it may likely lead to loss of ovarian function in young female patients. Dr. Welch discusses the possibility of harvesting ovarian tissue with patients and coordinates with the pediatric surgeon and Dr. Robins’ team. Ideally, harvesting can be done at the same time as another oncology-related operation on the child at Hasbro Children’s Hospital. Both teams are present in the operating room, and Dr. Robins continues fertility preservation procedures from there on.

For information about fertility preservation services for adults or children, call the National Fertility Preservation FERTLINE at (866) 708-3378 or Women & Infants Program for Fertility Preservation at (401) 453-7500 in Rhode Island.

About Women & Infants Hospital

Women & Infants Hospital of Rhode Island (womenandinfants.org), a Care New England hospital, is one of the nation’s leading specialty hospitals for women and newborns and a U.S.News Best Hospital in Gynecology.  The primary teaching affiliate of The Warren Alpert Medical School of Brown University for obstetrics, gynecology and newborn pediatrics, as well as a number of specialized programs in women’s medicine, Women & Infants is the seventh largest obstetrical service in the country with more than 8,500 deliveries per year. In 2009, Women & Infants opened the country’s largest, single-family room neonatal intensive care unit. The hospital is also a member of the Oncofertility Consortium‘s National Physician’s Cooperative, a network of clinical sites dedicated to preserving the fertility of young cancer patients.

New England’s premier hospital for women and newborns, Women & Infants and Brown offer fellowship programs in gynecologic oncology, maternal-fetal medicine, urogynecology and reconstructive pelvic surgery, neonatal-perinatal medicine, pediatric and perinatal pathology, gynecologic pathology and cytopathology, and reproductive endocrinology and infertility, as well as the nation’s only fellowship program in obstetric medicine.

Women & Infants has been designated as a Breast Center of Excellence from the American College of Radiography; a Center for In Vitro Maturation Excellence by SAGE In Vitro Fertilization; a Center of Biomedical Research Excellence by the National Institutes of Health; and a Neonatal Resource Services Center of Excellence.  It is one of the largest and most prestigious research facilities in high risk and normal obstetrics, gynecology and newborn pediatrics in the nation, and is a member of the National Cancer Institute’s Gynecologic Oncology Group.

About Hasbro Children’s Hospital

Hasbro Children’s Hospital (www.hasbrochildrenshospital.org) in Providence, RI, is the premier pediatric facility for clinical care, research and education for Rhode Island and surrounding southeastern New England.  A private, not-for-profit institution, it is the pediatric division of Rhode Island Hospital.  Rhode Island Hospital is the principal teaching hospital of The Warren Alpert Medical School of Brown University.  It was ranked among the top 30 children’s hospitals in the country by Parents magazine in 2009.

The third annual meeting of the Oncofertility Consortium will be held next week, September 13-15, in Chicago, Illinois. Over 150 participants from the U.S. and abroad will discuss the latest breakthroughs in the science and clinical applications of fertility preservation methods for cancer patients. More information on the event, including a meeting agenda, can be found here.

Dr. Jeffrey Chang wins the San Diego Science Alliance Partnership Award at a ceremony on May 21st, 2009. He is accompanied by SDSA Executive Director Nancy Taylor and SDSA Preseident Rick Beach. Photo courtesy of SDSA.

Dr. Jeffrey Chang, the principal investigator of the National Physicians Cooperative, is the winner of the Partnership Award from the San Diego Science Alliance. The award ceremony took place on May 21st in San Diego and honors Dr. Chang’s efforts to improve K-12 science education.

Dr. Chang is the Director of the Division of Reproductive Endocrinology at the University of California, San Diego. He was one of the leading physician scientists to identify Oncofertility as a critical issue for young women and he runs the San Diego equivalent of the Oncofertility Saturday Academy – the BE WiSE program.

Twelve young women from 10 different high schools and attending 10th to 12th grade in San Diego County are participating in the BE WiSE program. Their first session will be on reproductive biology and will take place on July 11th.