Health Problems Common in Survivors of Pediatric Cancer

Pediatric cancer treatment has come a long way, but health problems persist in survivorship.
Talk about this article with other patients, caregivers, and advocates in the Childhood CURE discussion group.
Nick Dustman of Jacksonville, Fla., was 16 when he had a lump removed from under his right ear. Earlier, two doctors had dismissed family concerns that the lump might be something serious. When the pathology report showed the cells to be atypical, the sample was sent to St. Jude Children’s Research Hospital in Memphis, Tenn., where Dustman received a diagnosis of Hodgkin lymphoma, a cancer of the immune system that accounts for about 4 percent of all childhood cancers.

Five years after receiving radiation treatment to the chest and neck at St. Jude, Dustman was declared cancer-free.

Decades later, however, the specter of Dustman’s treatment reappeared as breathing difficulties. A long-time athlete, Dustman found it increasingly difficult to catch his breath while exercising. His doctor suspected asthma and prescribed an inhaler, which proved ineffective.

“One day, during a run in Baltimore, my breathing became painful, and I had difficulty getting enough air,” Dustman recalls. “I thought I was developing fibrosis of the lungs, which I knew was a potential side effect of radiation treatment.”

Dustman, only partially correct, learned that his health issues were indeed related to his cancer treatment, but it wasn’t fibrosis—he had developed angina from radiation-related coronary artery disease. The diagnosis was confirmed at St. Jude in 2009 when Dustman returned for the St. Jude LIFE Study, the hospital’s ongoing childhood cancer survivorship research program.

“I ended up having a six-vessel cardiac bypass,” Dustman says. “The doctors told me that when you look at my clinical report, you can see exactly where the radiation had penetrated—it was in very specific patterns.”

Dustman, now 45 and a sales director for a pharmaceutical company, is among the estimated 395,000 survivors of childhood cancer living in the U.S. He’s also one of more than 2,400 former childhood cancer patients to date who have taken part in the St. Jude LIFE Study, the first large population of survivors to be evaluated using a comprehensive systematic clinical assessment to determine the prevalence of chronic health outcomes.

Following the children long-term has not only given the oncology community a glimpse of the late effects of their treatment and how better to prepare patients, it has also impacted the way children are treated today, says Melissa M. Hudson, director of the cancer survivorship division at St. Jude.

Hudson is the lead author of a recent report appearing in the Journal of the American Medical Association (JAMA) regarding health outcomes among adults treated for childhood cancer. In the St. Jude cohort of 1,713 survivors, 98 percent had at least one chronic health condition. And of that number, an estimated 68 percent had health issues that could be considered serious, disabling or life-threatening.

Cheryl Moring, 51, of New Edinburg, Ark., is also participating in the study. She developed an unusual growth behind her ear at age 5 in 1967. At St. Jude, doctors diagnosed her condition as acute lymphoblastic leukemia and told her parents she had six months to live.

Moring’s cancer went into remission following chemotherapy but returned a year later. “The cancer cells had gotten into my central nervous system, so I received several rounds of cranial radiation,” Moring recalls. “In 1972, I was considered cured, but I continued to go back to St. Jude for regular checkups until I was into my teens.”

Though the cranial radiation saved Moring’s life, it later affected her hearing. The problem started in high school and became more serious in college, requiring her to use a hearing aid. Today, Moring reports a 65 percent hearing deficit in her left ear and a 35 percent loss in her right ear.

Infertility was also a concern, but Moring, an elementary art teacher, was lucky—her reproductive organs were unaffected by the radiation and chemotherapy, and she is now the mother of two sons and a daughter.

The late effects experienced by Dustman and Moring are fairly typical for the treatments they received, especially decades ago when treatments were harsher and less selective. According to the JAMA analysis, the most common late effects among adult survivors of childhood cancer include abnormal pulmonary function, hearing loss, endocrine problems (including thyroid and gonad disorders, which affect hormones), reproductive issues, heart conditions, neurocognitive impairment, liver dysfunction, kidney dysfunction and skeletal disorders.

Years of study into late effects experienced by survivors of pediatric cancers have changed how children receive treatment for cancer today. “Our understanding of late effects after treatment for pediatric cancer has been one of the most influential motivators for change in therapy, and specifically moving into treatments that we believe will cause fewer long-term and late effects,” Hudson says. “We now recognize that we can’t trade one chronic or potentially life-threatening disease for another.”

Indeed, because cancer specialists better understand the late-effect risks posed by chemotherapy, radiation therapy and other treatment options, they strive to create treatment plans that minimize the danger.

Talk about this article with other patients, caregivers, and advocates in the Childhood CURE discussion group.
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