This post originally appeared on Thriving, the Boston Children’s Hospital blog.
Anna Protsiou was 5 when she was diagnosed with neuroblastoma in 2002. She remembers pain, and fruit-scented anesthesia masks that led her to stop eating cherries. She also remembers hospital arts and crafts projects. What she barely remembers is the pediatric oncologist who saved her life.
Protsiou had moved with her family from their native Greece to be treated for a year at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, and spoke no English. Today, she is a 20-year-old dance student at the School of Contemporary Dancers/ University of Winnipeg and a contortionist with a rubber-band body who’s ready to take charge of her own health care – and her story.
So Protsiou traveled from Canada, where her family relocated in 2014, to Boston to meet her physician, Lisa Diller, MD, and learn about potential late effects of the high-dose chemotherapy, radiation, and two stem cell transplants that eradicated her cancer after surgeons removed the tumor. “I don’t think anything is enough for what Dr. Diller did for me,” Protsiou says.
“Often it’s the parents who reach out,” Diller says. “There is a special bond between the parents and the physician who worked closely together to get a young child through treatment. To have a young adult reach out was very special.”
Sitting in the clinic exam room, waiting for the doctor, Protsiou is nervous, but once Diller arrives, the jitters vanish. The two laugh and hug. Diller, now chief medical officer of Dana-Farber/Boston Children’s, has brought a photograph of the two of them in 2003. “I’ve had this on my wall for years,” Diller says. Also on her wall is a photograph of Protsiou dancing, sent years later by her father.
Thus begins the reunion and survivor visit. Diller tells Protsiou about neuroblastoma, a cancer of young children that arises in the developing nervous system.
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“When I started practicing in 1988, Anna’s type of neuroblastoma was basically incurable,” Diller says. Its current overall cure rate is well over 50 percent – propelled by patients like Protsiou, whose parents enrolled them in clinical trials – but it remains lower than several other pediatric cancers.
Like two-thirds of new neuroblastoma patients, Protsiou had metastatic disease, which, at that time, was treated with chemotherapy and stem cell transplant. Dana-Farber/Boston Children’s clinicians had been studying adding a second stem cell transplant to their regimen, but patients were suffering serious side effects from the total body radiation used in one of the transplants. Those who survived were growing poorly, and a significant number developed secondary, radiation-induced cancers. The Protsiou family arrived just as Diller and her colleagues opened a pilot clinical trial using chemotherapy instead of radiation for the second transplant.
“Your dad had a really hard time deciding what to do, to have you go on the trial or to have you get the radiation that we knew had been successful,” Diller tells Protsiou. “He was scared not to do what we had done for years and scared about the side effects of radiation.”
“I can’t imagine being a parent in this situation,” says Protsiou, whose parents ultimately opted for the trial.
In 2005, the Children’s Oncology Group opened a randomized, multi-center trial, led by Diller, which tested the relative effectiveness of one transplant compared to the two transplants from Protsiou’s pilot study. The 3-year survival rate of patients who underwent two transplants was significantly better than that of patients who underwent a single transplant, and in 2016 the double transplant, boosted by a newly FDA-approved immunotherapy drug, became the new standard of care.
“You helped break ground,” Diller says. “You really helped a lot of kids who got neuroblastoma.”
So far, Protsiou has suffered few late effects of treatment, other than difficulty hearing high-pitched sounds and, perhaps, being shorter than she would have been without neuroblastoma. One chemotherapy agent could lead to cardiac problems, Diller tells her, so she should monitor her heart health. Another drug could affect fertility by causing early menopause.
“Now that I’m more aware of what could happen, I’m less worried. Who am I going to trust to take care of me? I’m going to trust myself and stand on my own two feet,” Protsiou says, relieved to have met the doctor she forgot and glad to have helped subsequent patients. “I needed to know what happened to me. It’s a mixture of acknowledging what happened, dealing with it in the future, and carrying it with me – not just knowing a story my parents told me.”
Learn more about neuroblastoma treatment and cancer survivor care at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center.