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Facing Life After a Cure

One day, it will all be over, thought Lauren Antognoli when she was 17 years old and undergoing treatment for Hodgkins Lymphoma. 

One day, her name would be “Lauren,” not “Lauren the cancer patient;” her own hair—not a wig — would be styled for the prom; and her figure would reemerge from under the 20 pounds of excess weight caused by her therapy.  

And one day, it was over. Her hair grew back, the pain subsided, and her body “deflated.” 

But, she said at the George Washington Cancer Institute’s (GWCI) Biennial Cancer Survivorship Research Symposium, May 20, regaining the life of a normal teenager “was easier said than done.”  

“Cancer touches every single aspect of your life,” she said. “Even though the disease is eradicated from your body, it’s not gone from you or your life.”

Antognoli is one of the approximately 270,000 survivors in the United States who was diagnosed with cancer before she turned 21. Today, she is 26 years old and cancer-free, but still suffers from ailments including fatigue, dry mouth, memory lapses, and other understudied physical and cognitive impairments called “late effects” from her treatment. 

At this year’s symposium — sponsored by the EagleBank Foundation, the GW Hospital Women’s Board, the American Cancer Society, and LIVESTRONG — nearly 70 cancer survivors, researchers, doctors, and caregivers convened to share knowledge and discuss solutions related to the array of physical, psychological, and social challenges faced by adult survivors of pediatric cancer like Antognoli. 

“Today, we will not only learn the unique challenges that survivors face and current interventions to attenuate those challenges, but we will also discuss and explore new approaches to reduce disparities among survivors,” said Mandi Pratt Chapman, associate director of GWCI’s Community Programs and co-director of the GWCI Center for the Advancement of Cancer Survivorship, Navigation, and Policy, during her welcoming remarks. 

Symposium participants first learned how adult survivors of pediatric cancer stack up against their peers who have never had cancer. While 80 percent of the former cohort survive beyond five years after their diagnosis, survivors still die at about eleven times the rate of the general population due to late effects like cancer recurrence and higher rates of cardiac and pulmonary diseases, said Sharon Castellino, M.D., F.A.A.P., associate professor of Pediatrics in Hematology/Oncology at Wake Forest University Health Sciences.

Among cancer survivors themselves, health outcomes seem to be influenced by a variety of factors including ethnic background, socioeconomic status, education level, insurance status, and health behavior, said Castellino. 

The conference also addressed the unmet needs of young cancer patients. When Maimah Karmo was diagnosed at age 32, she found that there were few — if any — resources for the under-40 cancer crowd. “I learned to be my own best advocate,” she said.  “If I hadn’t pushed for a biopsy, I would be dead.” Karmo subsequently founded the Tigerlily Foundation, a program that seeks to educate, empower, and advocate for women under 40 who have, had, or are at risk for breast cancer. 

Stacia Wagner, M.S.W., M.Ed., senior director of survivor programs at the Children’s Brain Tumor Foundation, also shared her experience as a young adult cancer patient. Diagnosed with Hodgkin’s lymphoma while in college, Wagner stressed the need for clinicians to be sensitive to the unique psychosocial needs of young adults 

"When you work with young adults, keep in mind that they've never had an enema. Their experience with pain is usually sports injuries, accidents, or heartbreak,” she said. 

“We have to have realistic and age-appropriate information…and we have to continue to push for this underserved community.” 

The symposium highlighted several innovative programs that are currently addressing the needs of adult survivors of pediatric cancer. For example, Thriving After Cancer (TAC), a program run by GWCI, Children’s National Medical Center, and the GW Medical Faculty Associates, provides long-term follow-up care to childhood cancer survivors. 

The clinic, which has already served 60 survivors in less than a year of operation, rotates patients through a team of clinicians (including a primary care doctor, a nutritionist, and a psychologist) who help the survivors understand their past treatments, and develop a plan for future care and health maintenance. 

Most importantly, said TAC patient Anne Willis, the clinic becomes a medical home for survivors in limbo between pediatricians and adult cancer specialists. 

“I finally feel like I have a team helping me to get the care that I need,” said the 26 year-old Ewing’s Sarcoma survivor who spent six years trying to obtain a treatment plan detailing the therapy she underwent as a 13-year-old. 

Symposium participants also had the opportunity to create their own solutions to the day’s concerns, and found that interventions need to occur from psychosocial, health maintenance, community-based, health system, and professional training perspectives. 

First and foremost, the groups said, more research is critical to support evidence-based practice and to influence policy.  But, “research usually guides care, but so do two other things: the input of patients and the experience of the provider,” reminded Michael Feuerstein, Ph.D., M.P.H., professor of Medical and Clinical Psychology at the Uniformed Services University of the Health Sciences and chair of the symposium.

Other solutions included a push for multidisciplinary and coordinated care; and education and awareness among survivors, educators, and the public.

“This is a major public health problem,” concluded Feuerstein, “and it is going to become more of a major public health problem, as the incidence of cancer is going up, the prevalence goes up. We need to continue to work together to change the experiences of cancer survivors.”