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As the number of childhood cancer survivors grows each year, so does the demand for specialists who understand the long-term effects of cancer treatment in adult survivors of pediatric cancers. In 2010, Huntsman Cancer Institute (HCI) opened the Pediatric Cancer Late Effects Clinic to address the medical and psychosocial issues this survivor group faces.
Late effects are any long-term complications from cancer therapy. Examples include infertility, limited limb function, heart problems, hearing loss, and a higher risk of a secondary cancer or recurrence of the original cancer.
The clinic is headed by Jennifer Wright, MD, an assistant professor in the Department of Pediatrics at the University of Utah, who specializes in the management of childhood sarcomas and whose research interest is long-term follow-up care of childhood cancer survivors. Wright completed a combined internal medicine-pediatrics residency and a pediatric hematology oncology fellowship.
“The idea for this clinic really grew from my prior training,” says Wright. “The great news is, many children survive childhood cancers and grow up to adulthood. That’s the whole reason for this clinic.”
Studies show that more than 60% of childhood cancer survivors develop at least one late effect. The Children’s Oncology Group, a network of institutions dedicated to advancing research in pediatric cancer, publishes screening guidelines for late effects that Wright tailors to each patient.
“The clinic’s services are medical in nature, but most survivors express relief just knowing we are here, and that they haven’t been forgotten,” says Wright.
When Wright first met with HCI researchers to discuss clinical management of survivorship issues, she was introduced to Janet Bloch, ANP, director of the Linda B. and Robert B. Wiggins Wellness Center, and William Dunson, MD, medical director of outpatient services at HCI and director of the Internal Medicine Acute Care Clinic. Their shared interest in the ongoing care of cancer survivors blossomed into the Pediatric Cancer Late Effects Clinic.
The clinic now operates as part of the Wellness Center, giving patients access to HCI specialists, including social workers, dietitians, exercise specialists, and mind-body programs in addition to Wright’s expertise.
“Dr. Wright is uniquely qualified to serve adult survivors of pediatric cancers as she is both a pediatric oncologist and board-certified in internal medicine,” says Bloch. “She is able to understand the medical and psychosocial issues that some adult survivors of childhood cancers face.”
Wright says she envisions the clinic incorporating additional providers, such as an endocrinologist for brain tumor survivors and a cardiologist for patients with heart-related late effects. She also wants to educate primary care doctors about cancer late effects and how to identify and screen for them. After a clinic visit, patients receive a personal treatment summary and a recommended follow-up plan to take to their primary care doctor. But Wright is clear about her main goal in leading this clinic.
“We are here to educate these survivors about the late effects that they are at risk for based on the treatments they received. If they have developed a late effect, we get them connected to the specialist who can help them,” says Wright. “We want to help ease their concerns while empowering them to become their own health care advocates.”
Jenna Zufelt with her husband and daughter
Jenna Zufelt lives in Delta, Utah, a farming community two hours outside Salt Lake City. She enjoys being a mom, four-wheeling, and doing crafts. And thanks to the Pediatric Cancer Late Effects Clinic, she visits Huntsman Cancer Institute (HCI) to meet with Jennifer Wright, MD.
Zufelt was diagnosed with rhabdomyosarcoma, a rare cancer that occurs in muscles and connective tissues, at the age of four. “I was playing dentist with my dad,” says Zufelt. “He saw lumps at the back of my throat and he knew something wasn’t right.”
After she was treated, Zufelt would receive phone calls reminding her of regular follow-up visits. Once she turned 18, however, she says those phone calls stopped. Zufelt’s mother was concerned her daughter needed to keep having regular checkups, but didn’t know where to go. When she heard about the new Pediatric Cancer Late Effects Clinic at HCI, she immediately made an appointment for her daughter.
“This clinic is so important because even though the cancer is in your past, it’s always on your mind,” says Zufelt, now 25. “Knowing this clinic is there eases my mind.”
Although she didn’t know what to expect at her first appointment, Zufelt was quickly put at ease when she met Wright. “Dr. Wright is wonderful,” says Zufelt. “She answered all my questions, one by one, and made me feel really comfortable, which is probably the most important thing. Dr. Wright referred me to a specialist who could help me. I was so impressed with how everyone works in a team.” Zufelt will continue to visit the Pediatric Cancer Late Effects Clinic yearly.