Oncofertility and Pediatric Oncology

UK pediatric specialists honor the resilience of young cancer patients

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LEXINGTON While most of us grimace at the mention of children and cancer, UK HealthCare pediatric specialists Leslie Appiah, MD, director of Oncofertility, and Lars Wagner, MD, director of Pediatric Oncology, spend their days in a hopeful world devoted to brightening the future of young cancer sufferers. Appiah’s work with oncofertility – the preservation of reproductive organs during cancer treatment – and Wagners work with Kentucky Children’s Hospital cancer patients put them on the front line of UK’s efforts to enrich its delivery of care to cancer patients. These two doctors clearly love helping children and are inspired to create comprehensive programs that honor the resilience of their young patients. Their patients’ excitement to get on with their daily lives compels both of them. “We try to capture that energy from the kids, and it really helps us a lot,” says Wagner.

From Childhood Goal to Serving Children

A native Texan, Appiah knew her direction in life early. “As a young girl, I wanted to play an instrumental role in bringing healthy children into the world,” she recalls. Years later, as a budding OB/GYN, she was moved by the comprehensive and compassionate care of a mentor whose “ability to put young gynecology patients at ease, not to mention her surgical prowess, made a deep impression on me.” Appiah chose to devote her career solely to gynecology, landing a place as a BIRCWH (Building Interdisciplinary Research Centers for Women’s Health) scholar, then a two-year fellowship in pediatric and adolescent gynecology.

Appiah is an acolyte for the evolution of pediatric gynecology towards more process. Through Pediatric and Adolescent Gynecology Fellowship programs, “We are able to train residents and fellows how to talk to adolescents, and how doing this well impacts their ability to deliver quality care.” She explains that, “There is a lot of counseling to be done with young girls – and with their caregivers. It takes time, patience, and dedication to build the rapport needed to work with young girls in managing their gynecologic and reproductive care.” She concludes, “The key is to treat them with respect and not minimize their feelings. Once we do that, we have open lines of communication and can get to the real issues.”

A Next Step: Oncofertility

In 2006, Appiah was drawn to Cincinnati Children’s Hospital because of the patient-centered care and opportunities for academic growth. During her time there she built its Oncofertility program and assumed the role of fellowship director of the Pediatric and Adolescent Gynecology program. Advances in cancer treatments mean patients are living longer; subsequently, quality of life is becoming more of a focus and fertility preservation is central to that. While fertility preservation during chemotherapy and radiation can be a concern for all patients, it is particularly crucial for those youngest patients who have their entire lives ahead of them.

Appiah’s devotion to communication and process improvement serves her masterfully in this capacity. She explains that, “My job is to counsel patients, and patient families, before they receive treatment and then provide options for fertility preservation. That may include sperm banking, or freezing of eggs, embryo, or ovarian tissue.” Ovarian tissue freezing, while experimental is the only option for prepubescent girls who have not yet begun to ovulate. It also remains the only option for pubescent patients who do not have the luxury of time to undergo ovarian stimulation and IVF due to the severity of their disease. Few families anticipate this conversation as they focus on getting their child through treatment, but Appiah says that, “When they hear about their options, and they know there is something they can do, they feel relieved. To be actively involved in the preservation of fertility is something that gives families a feeling of control. It’s put in the back of their minds so their energy can go to supporting their child through treatment.”

UK brought Appiah to Lexington to establish its Oncofertility program. She has set her sights high: “Our goal is to make this a center of excellence in the management of all aspects of oncofertility: research, practice, and education.” She relies on the Oncofertility Consortium at Northwestern University for support. Directed by Dr. Teresa Woodruff, PhD, who coined the term in 2000, this highly evolved program has developed systematic treatment protocols and is very engaged in disseminating information so that all patients receive the same standard of care. Appiah describes Dr. Woodruff as a mentor noting, that hers is a highly collaborative field, “As our programs develop, we all reach out to other places that want to develop theirs.” This is a practice she has learned from Woodruff and feels is important to the advancement of the field.

Having developed one such program, Appiah is well-prepared for what lies ahead. “One of the challenges with an oncofertility program is to try to ensure standardization of care,” she says. Ideally, within UK, a cancer diagnosis will trigger a fertility consult, then access to treatment options will be ensured for all patients, and every patient will be treated equally. However, barriers such as cost and lack of insurance coverage for assisted reproductive technologies (ART) exist and Appiah and Wagner work closely together to identify and address these barriers when possible. This involves considerable coordination across the medical campus. Other program goals are to conduct research and publish findings, increase knowledge about the role of fertility preservation in the management of other chemotherapy-treated diseases such as systemic lupus erythematosus and sickle-cell anemia, and to push for treatment-related policy reform at the state level. Appiah spends one day a week at Norton Hospital in Louisville, seeing oncofertility patients of all ages and genders in collaboration with both pediatric gynecologists and adult oncologists there.

Pediatric Oncology: Appeal and Evolution

Dr. Lars Wagner developed an interest in pediatric oncology early in medical school at UK, so he chose a residency at UT Memphis, which has an association with St. Jude’s Children’s Hospital. After four years as a general pediatrician, he did fellowship training at St Jude’s. His work in pediatric oncology initially took him to the University of Utah, then Cincinnati Children’s Hospital, where he and Appiah worked together for a number of years. The field satisfies him on several levels. He says, “I love both the science and the complexity of it: I work with all the age groups, every type of specialist, and I do acute, ICU, and primary care.”

Childhood cancers makes up only about two percent of all cancer cases, yet the pediatric oncology community is a highly collaborative group driven to serve afflicted children. They place almost 50 percent of their patients into clinical trials and pool data from many facilities to ensure sufficient data. Wagner says that most pediatric oncology programs rely on The Children’s Oncology Group as a major source of funding for research that provides measureable results.

Patient care is evolving thoughtfully. Wagner notes increased attention to the affective experience of patients, saying “It’s a critical part of supporting kids during this process.” His facility has two social workers on staff who provide emotional and psychological support for patients and families. His most recent addition is a child-life specialist, Meg Halstead She is dedicated to putting kids at ease during their clinic visits, distracting and entertaining them before the doctor arrives, and educating them about their body. “Meg is definitely the favorite member of our staff,” he notes. A school-intervention specialist comes on board soon. Both of these positions were funded by the student-run UK fundraising organization, “DanceBlue.”

Targeted therapies, or genetic targeting, are a new paradigm popular in pediatric oncology. Wagner explains, “This allows us to target the treatment to specific genetic features in an individual patient’s tumor, so it really limits side effects.” Along with this, risk stratification is another way that pediatric oncologists are mitigating side effects for young patients. “Very intensive therapies are appropriate for the highest risk patients, but may not be necessary for standard risk patients,” Wagner explains.

A Comprehensive Approach Serves Children Best

The arrival of Appiah adds another dimension to Wagner’s program. Right away she began working with patients and families on oncofertility issues. He says, “I was so thrilled when she got here. Leslie provides direct intervention for some of our patients, counseling for others.” His nursing staff is already seeing the difference, from new faces in the clinic putting families at ease to information about medicines that can spare young ovaries. Soon his entire clinic will move to a more convenient location, adjacent to the Kentucky Children’s Hospital.

UK’s commitment to practicing at the frontiers of pediatric health and oncology are highly valued by both physicians. Wagner says he “can sense a lot of changes that we are trying to make and see growth in the program. I know what kids can do when they have adults who grasp their needs.” Appiah knows her program has support from the top and the right people are in place to make it go. “Between Dr. Evers, Dr. Wagner, and Dr. Wendy Hansen (chair of OB/GYN) I have the ear of the necessary people,” she notes.

Together, they are moving oncology forward for the youngest cancer patients in the Commonwealth. “Wagner and I see things similarly and want the same things for these patients,” says Appiah. Wagner concludes, “It’s a good place to be. Sure there are some very sad days, but lots of victories. This is a fight worth fighting because we are really making a difference.”