Addressing childhood cancer
By: Lisa Diller, MD
With an illness as rare as cancer, what is the role of a primary care practitioner?
PCPs are the first to find abnormalities and recommend consulting a specialist. We see most of our patients after their pediatrician discovered something of concern, often during a well-child check. If a diagnosis of a malignancy is made, the pediatric oncology team at Dana-Farber/Children's Hospital Cancer Care (DF/CHCC) provides most of the clinical care, but PCPs assist with outpatient care by monitoring blood counts and nutrition levels or providing nursing support.
After treatment, children enter a two-year transition period during which the focus is on risk of recurrence and side effects of therapy. Pediatricians are an integral part of the child's return to normal life, and a dialogue between the oncologist and pediatrician is essential, especially around well-child care, growth and immunizations. Eventually, the focus changes from risk of recurrence to risk of late effects from treatment—screening becomes crucial for late effects of anticancer drugs and complications, including endocrine abnormalities, learning issues, secondary cancers or cardiac dysfunction.
What symptoms should pediatricians look for when they suspect cancer?
It's difficult to list cancer symptoms because cancer is so diverse. Diagnosis is further complicated because many signs and symptoms, like fever, bruising and headaches, are normal in healthy children.
Yet I'm amazed at how well PCPs distinguish the usual bumps and pains from the concerning ones. They sense which symptoms truly need evaluation and astutely order tests using the character, longevity and severity of symptoms—and often instinct—to help them. I think their job is much harder than ours as oncologists.
How can PCPs soften the impact of the word cancer?
It's not easy. Take our most common diagnosis, acute lymphoblastic leukemia (ALL). Oncologists often receive a late afternoon call about a child seen in the office earlier that day whose complete blood count results suggest ALL. We usually see these children in the emergency room that night. One of the hardest jobs a pediatrician has is to make that phone call to get the patient in for a consultation.
For most pediatric cancers, ALL in particular, it's important to be reassuring. Cure rates for childhood ALL are more than 80 percent, and as with most pediatric cancers, the intent is to cure, not to buy time. Many families' prior experience with cancer is with elderly relatives, and they're often unaware of the good prognosis in children. I also think parents find it reassuring to know that we are highly trained specialists who make definitive diagnoses and know the newest treatments.
Is it important to receive care at a
pediatric facility?
Absolutely. Nearly all children in the U.S. with cancer are treated at a pediatric tertiary care institution or subspecialty center like DF/CHCC. The need for pediatric pathologists, radiologists and surgeons in the diagnosis and treatment of pediatric cancers cannot be understated. Brain tumor care is a great example: our pediatric neurosurgeon, neurologist, neuropathologist and neurooncologist can diagnose tumors, like medulloblastoma and optic glioma, rarely seen by our adult medicine colleagues. Specialized pediatric oncology nurses and mental health providers are also integral to providing a caring environment for children with cancer.
What should a family expect if their child has cancer?
The child will either be seen in our outpatient Jimmy Fund clinic at the Dana-Farber Cancer Institute (DFCI) or admitted to Children's Hospital Boston. The patient will undergo preliminary tests, which may include MRI scans, blood work or X-rays. This process may take several days, but the goal is to arrive at an accurate diagnosis. Our multi-disciplinary team of pediatric specialists, including an oncologist, surgeon, radiation oncologist, pathologist and radiologist, evaluate the test results, make a final diagnosis and design a treatment plan.
If a child is hospitalized during the diagnostic period or for treatment, a parent can usually sleep at the bedside. Patients well enough to receive outpatient evaluations and treatment may be able to stay overnight at the Ronald McDonald House.
At home, well-meaning relatives and friends often overwhelm parents. Advise them to be direct about what they do and do not need: when friends offer help, suggest they donate blood. Though donations may not directly benefit their child, more blood will be available for other sick children. Many parents comment on how helpful neighbors and friends can be in caring for other children at home, making meals and driving visitors, including friends, to visit the patient.
Where should parents obtain information?
Direct parents to Web sites of reliable cancer institutions like the National Cancer Institute (NCI) and the American Society of Clinical Oncology. In fact, the NCI Web site offers brief overviews of the most updated therapeutic approaches. Parents and children can also visit Children's and the Jimmy Fund Clinic at DFCI to access books and videos and meet with resource specialists.
