Childhood cancer survivors assist St. Jude in Life study

By Michaela Gibson Morris/NEMS Daily Journal

TUPELO – Two Lee County women are among the 1,700 childhood cancer survivors helping St. Jude Children’s Research Hospital build a picture of long-term survival.
Sandra Owen of Palmetto community and Catherine Mize of Tupelo joined the St. Jude Life study to help themselves and other cancer survivors know more about what they face as they age.
“I gives me a chance to give back to St. Jude in a very tangible way,” said Mize, who was diagnosed with Hodgkin’s disease at the age of 21. “They saved my life.”
That St. Jude has enough adult survivors to field such a study speaks volumes to the evolution of pediatric cancer treatment. In the early 1970s, when Owen was diagnosed at age 4 with acute lymphoblastic leukemia, only 5 percent of patients survived five years. Adult childhood cancer survivors were exceptionally rare.
“We didn’t exist,” said Owen, who as a young registered nurse was the first St. Jude patient to return to work at the hospital.
These days, 98 to 99 percent of newly diagnosed children with that type of leukemia attain initial remission. There is a 90 percent cure rate – children who remain leukemia-free for 10 years.
“Now we are surviving, but we’re seeing side effects,” said the 46-year-old Owen. Over the past two decades, she has fought through two complicated pregnancies which resulted in premature births, thyroid problems, two benign brain tumors, osteopenia and myasthenia gravis. All but the myasthenia gravis – an autoimmune neuromuscular disorder – are attributed to the chemotherapy and cranial radiation she had to treat her cancer.
“I’m the first to report it,” Owen said of the myasthenia gravis, so they don’t know if it’s related. “Even with all my quirks and quacks, I’m still blessed.”
St. Jude researchers have known that cancer treatment increases the risk for future health problems for survivors. Unlike most adult cancer survivors – 70 percent of whom are diagnosed between age 55 and 84 – childhood cancer survivors face a long horizon. The average U.S. life expectancy is 78.7 years.
Instead of relying on self-reported information and registries, the St. Jude Life Study brought survivors back to the Memphis hospital for comprehensive batteries of tests specific to their cancer diagnosis and treatment.
Results from the St. Jude Life Study, published last month in the Journal of the American Medical Association, confirmed the increased risk of certain kinds of cancer in patients who went through radiation, but it also found a high prevalence of chronic conditions like obesity, lipid disorders, insulin resistance and hypertension.
“We’re finding the types of conditions you’d expect to see in people in their 60s,” said Dr. Melissa Hudson, director of the St. Jude Division of Cancer Survivorship and co-first author of the study, noting that the average age in the study is 33.
By age 45, the study found that 80 percent of survivors had a life-threatening, serious or disabling chronic condition. Among the results:
• Abnormal lung function in 65 percent of those whose cancer treatment put them at risk.
• Endocrine problems involving the hypothalamus and pituitary glands in 56 percent of at-risk survivors.
• Neurocognitive impairment in 48 percent of at-risk survivors.
“These findings are a wake-up call to health care providers and survivors to be proactive about their health,” Hudson said.
In many cases, the issues were identified early and could be well-managed.
Not only did the information help put together the big picture on survivor health, but each person also got their results and a wellness plan, Mize said.
“I’m not a typical 56-year-old when it comes to my medical history,” Mize said.
The St. Jude study uncovered two things for Mize. In 2008, the testing revealed she had early stage breast cancer, likely connected to the radiation she had to treat the lymphoma 30 years earlier.
“I’ve always been very religious about my mammograms,” Mize said. “I was due for an exam in two months.”
Based on recommendations made during follow-up testing earlier this year, Mize went through a heart cath procedure where her Tupelo cardiologist found one of her coronary arteries had a 99 percent blockage.
“I thought I had pulmonary issues,” Mize said. “I wasn’t thinking it was my heart. … they probably saved me a heart attack.”
Treatment for childhood cancer has evolved since Mize and Owen were treated in the 1970s. In the 1990s, adaptive care began, Hudson said. By 2000, there were more medical imaging and staging technology available, as well as more tailored treatments. Now some of the same agents are still used, but they are typically used in much lower doses. New agents are less toxic. Radiation treatment is limited, and more targeted when it must be used.
“Our hope is that contemporary survivors will have less chronic disease,” Hudson said.
Still the study outlines how important it is for childhood cancer survivors to know the details of their treatment as they grow into adults.
“They’ll need to be advocates,” with a good understanding of how their treatment changes their needs for screenings and preventive care, Hudson said. “Pediatric cancer survivors are unique.”
michaela.morris@journalinc.com

Find Out More
The Division of Cancer Suvivorship offers resources for pediatric survivors at st.jude.org.