By Jennifer Eder
Anne Willis was diagnosed with Ewing’s sarcoma – a malignant bone tumor that primarily affects children and adolescents – when she was 15.
After three surgeries and 14 months of chemotherapy and radiation, she went into remission.
In an effort to learn more about her future medical needs, Ms. Willis, now 29, tried to get a treatment summary from her former oncologist, but the doctor said he was too busy, leaving Ms. Willis to piece together her own medical records.
“I didn’t even know what the words meant. It was all doctor speak,” said Ms. Willis, who grew up in Houston. “I couldn’t even read his handwriting.”
Mystified by the medical jargon, Ms. Willis didn’t know how to take control of her own health until she learned about the GW Cancer Institute’s Thriving After Cancer Program, which provides comprehensive care to adult survivors of childhood cancer.
The clinic, which opened in July 2010, addresses patients’ long-term health care needs by educating patients about potential late medical or psychosocial effects from cancer treatments and provides guidance on how to monitor or treat any existing or future health problem.
“As our survivors become adults, there is a need for quality care that can address their growing concerns at an appropriate location,” said Katarina Steacy, a nurse practitioner at Children’s National Medical Center, who manages the TAC clinic. “It is thrilling to be a part of a program that will provide a comprehensive medical home for these survivors.”
While cure rates are approaching 80 percent for most childhood cancers, survivors still face the potential for long-term and late effects of cancer treatments such as infertility, heart problems, weak bones and depression.
“The sobering incidence of significant long-term medical conditions has made it necessary for lifelong follow-up of individuals diagnosed with and treated for cancer as children,” said Gregory Reaman, professor of pediatrics at GW’s School of Medicine and Health Sciences, who initiated the TAC program.
TAC, which has seen 58 patients since it opened, was created through a partnership between Children’s National Medical Center, the GW Cancer Institute, the GW Medical Faculty Associates and the GW Center for Integrative Medicine. Survivorship clinics are held on Wednesday mornings in the MFA’s Center for General Internal Medicine. Patients meet with a multidisciplinary team of specialists including a pediatric oncologist, medical internist, nurse practitioner, psychiatrist, registered dietician and patient navigator. The team assesses and documents each patient’s medical history and offers follow-up care recommendations.
“I have never been so excited to spend a morning in a clinic, and I’ve never seen clinicians so excited to spend the morning with me,” said Ms. Willis. “Everyone was focused on me and what I needed. Finally, I had a place where everything was coordinated, everybody was together and everyone was communicating about my health.”
During her visit, Ms. Willis told Ms. Steacy everything she knew about her past treatments. Ms. Steacy then tracked down all of Ms. Willis’ medical records and pieced together a two-page treatment summary, including the specific drugs and amount of radiation, as well as a survivorship care plan.
As a result of her chemotherapy and radiation, Ms. Willis faces the potential of developing kidney problems, thyroid abnormalities, infertility and heart disease. The TAC team recommended that she see a fertility specialist, get blood work done to check her thyroid and continue to return to the survivorship clinic once a year so the team can track her progress.
“We hope patients will leave better educated about their previous treatments and better equipped to manage and prevent future health risks,” said Mandi Chapman, director of the Cancer Institute’s Office of Cancer Survivorship. “We want to help survivors attain the best quality of life.”
Ms. Willis will be sharing her experience of going through the TAC program at the Cancer Institute’s biennial cancer survivorship research symposium on Friday. The symposium, Research to Practice: Creating Novel Interventions to Eliminate Health Inequalities, will bring together survivorship researchers and clinicians as well as cancer survivors and caregivers. Participants will discuss the drivers of health disparities facing adult survivors of pediatric cancers and young adult cancer survivors and identify interventions to reduce those disparities.
“I feel this huge sense of relief because I finally feel much more confident in coordinating my care and moving forward,” said Ms. Willis.