Sadhna Shankar, M.D., examines Gabe Sipos, a survivor of rhabdomyosarcoma, a cancerous tumor.
Photo by Anne Rayner
Cancer survivorship clinic debuts
Luke Harrison, a leukemia survivor, waits to be seen at the
Childhood Cancer Survivorship Clinic.
Photo by Anne Rayner
The walls in the office of Sadhna Shankar, M.D., are adorned with photographs of current and former cancer patients she has treated through the years.
Some of the young faces smiling back at Shankar, associate professor of Pediatric Hematology/Oncology at the Monroe Carell Jr. Children's Hospital at Vanderbilt, are children who lost the fight, but most are children who represent victory. For the survivors, their story doesn't necessarily end with their last treatment.
Shankar knows that once the cancer war has been won, many of her patients will face other battles with their health. It's one of the bitter truths about the disease — you inevitably do some harm in the quest for a cure.
“Approximately 75 to 80 percent of childhood cancer patients are likely to be long-term survivors,” she said. “But survival comes with a cost and, some survivors may experience serious long-term consequences.”
That's why the Childhood Cancer Program at Children's Hospital has started a childhood cancer survivorship program and clinic to follow up on former patients, do health screenings and make sure patients are aware of any additional future health concerns. According to the National Cancer Institute, side effects of cancer treatment called “late effects” can appear months or years after treatment has ended, and can include physical or mental problems and second cancers.
“The National Cancer Institute now estimates that one in every 330 children will develop cancer before the age of 20,” said Jim Whitlock, M.D., director of the Division of Pediatric Hematology/Oncology.
Although three-quarters of childhood cancer patients will survive their cancer, these children face a wide range of physical, emotional and psychosocial problems — possible learning disorders; damage to the heart, lungs, kidneys and other vital organs; impaired fertility; and insurability.”
The NCI states that survivors of childhood cancer are five times more likely to experience chronic health issues than their siblings who did not have cancer.
“It's important to have some system for caring for issues that come from being a cancer patient, and make them aware of problems. Educating patients and their health care providers regarding physical and psychological effects of cancer therapy is very important,” Shankar said. “There typically hasn't been any program in place for patients after they are cured.”
More and more patients are surviving childhood cancer, which is driving up the numbers of those experiencing late effects. The clinic helps bridge the gap between hematologists/oncologists and primary care doctors.
When a child is diagnosed with cancer, curing the disease is the primary focus, Shankar said.
“We realize that curing the cancer is the most important thing, but we cannot forget about the potential for future problems,” Shankar said.
At diagnosis, parents and patients are educated about the risks associated with cancer treatment, but life-saving treatment nearly always overrules the potential risks for side effects. Many times, patients who survive cancer don't spend much time anticipating problems down the road.
“Approximately half of pediatric cancer patients may have some sort of late effect and one in four of those is serious,” Shankar said. “Early diagnosis and management of more serious long-term side effects can be made by increasing awareness among patients and providers. It is also important to remember that many survivors are doing well and lead near normal lives.”
The most frequent problems occur with patients suffering from leukemia who have received cranial radiation or those with brain tumors. Children with these cancers tend to have developmental and learning problems as well as endocrine dysfunction Shankar said.
Hodgkin's lymphoma survivors make up a large portion of late effects sufferers. This is an eminently curable cancer but both chemotherapy and radiation therapy used for treating this type of cancer significantly increases the risk of developing many long-term complications.
Bone cancer survivors can experience disability secondary to hearing loss due to chemotherapy treatments, loss of kidney function and even secondary leukemia. A small number of leukemia patients may develop heart failure, one of the most severe late effects of therapy, as a result of damage to the heart muscle secondary to chemotherapy and radiation therapy. Radiation therapy also increases the risk of developing coronary artery disease at a younger age.
Survivors of childhood cancer are also at increased risk of developing secondary cancers. For example, girls with Hodgkin's lymphoma who have been treated with radiation therapy to their chest have a significantly higher risk of developing breast cancer at a young age. Rigorous breast cancer screenings at an earlier age for these patients is required, Shankar said.
In addition to health effects, many pediatric cancer survivors can suffer from physiological and psycho-social effects.
“Stress, anxiety and depression can occur in childhood cancer survivors, and we have two clinical psychologists on our team to deal with these issues,” Shankar said.
Survivors of childhood cancer who are at least two years after completion of therapy and up to five years from diagnosis will be encouraged to make an appointment to be seen at the clinic at least once a year.
Shankar, internist Travis Bowles, M.D.; endocrinologists Jennifer Najjar, M.D., and Jill Simmons, M.D.; clinical psychologists Deborah Van Slyke, Ph.D., and Frances Niarhos, Ph.D.; and Melessa Sumich, R.N., will employ a team approach. Patients with other problems will be referred to specialists.
The clinic is currently held twice a month in the Doctors' Office Tower but will “grow as needed,” said Shankar.