Knowing and communicating with the healthcare team can be important during treatment.
When Kimberly Mazur received a diagnosis of Hodgkin lymphoma in 1989 at age 26, a small cluster of medical professionals—including a few oncologists, nurses and social workers—coordinated every aspect of her year-long treatment. She felt comfortable with the small group, she says, in retrospect. But her current role as an oncology outpatient clinic nurse—one of dozens of healthcare team members planning and carrying out patient care—stands in sharp contrast to her experience only two decades ago.
These days, cancer care teams can be made up of an array of specialists and support staff. Another important shift has been in the changing roles of these professionals as the number of cancer patients and survivors surges, with patients dealing more often with nurse practitioners or physician assistants instead of oncologists. Crucial assistance from psychologists and social workers—once an afterthought—is often introduced at the outset of care, as well.
“The care team I work for now is very large and very different from the past,” says Mazur, now 49, who works at a Mayo Clinic facility in Scottsdale, Ariz. “It’s a whole collaboration of making sure patients’ needs are met.”
Regardless of where in the body abnormal cells appear, the process of determining whether cancer is present unfolds similarly. A sample is typically taken, either from a needle or open biopsy, by a physician and sent to a pathologist for examination. If the sample is cancerous, the type and grade (known as histology) is noted in a pathology report, which may also include additional protein and genetic tests to better diagnose disease subtypes, determine prognosis and define optimal treatments.
Further tests may also be necessary to help physicians determine the stage of the cancer, including additional blood work—especially in the case of blood-borne cancers such as leukemia, which are typically diagnosed through bone marrow samples. Scans, such as those obtained through computed tomography (CT), magnetic resonance imaging (MRI) and positron emission tomography (PET), can pinpoint the size of a tumor and indicate whether it has spread (metastasized) to distant sites in the body.
At larger hospitals and major oncology centers, the next step typically involves assembling the core professionals who make up the new patient’s cancer care team and then meeting with the patient to discuss treatment options and make initial decisions.
Depending on the type and stage of cancer, an oncologist usually serves as the “quarterback” of the team, either for the entire course of treatment or switching out with another specialist at different phases of care. If surgery is the primary treatment, for instance, a surgical oncologist may take the helm; when radiation or chemotherapy is indicated, a radiation oncologist or medical oncologist might lead the way, respectively, keeping the rest of the team informed.
“You have to know that someone is at the head of the team or that you’re clear about the roles within your team,” says Nancy Borstelmann, a director of patient/family support and education at Dana-Farber Cancer Institute in Boston. “It helps to know who is taking what part in your care.”
More and more, “non-physician practitioners” are narrowing the growing gap between supply and demand for oncology services, experts say. A study sponsored by the American Society of Clinical Oncology projects the demand for oncology’ visits to rise 48 percent in the 15-year period ending in 2020 and the number of people living with or surviving cancer to skyrocket as the population ages. Advanced degrees and certifications earned by many of these professionals—especially nurse practitioners and physician assistants—allow them, depending on their location, to perform duties and procedures previously only available from doctors.
Regardless of who they encounter along the continuum of care, patients should remember that they are experts on themselves, and so are essential to the team. They have the right to be fully informed about their diagnosis, treatment, side effects and long-term health outlook, as well as the right to be treated with sensitivity and be involved in medical decisions.
“Don’t be afraid to ask questions or seek clarification if you don’t understand the answers,” says Sheryl Ness, a nurse educator for the cancer education program at the Mayo Clinic in Rochester, Minn. “Don’t feel guilty or stupid if you don’t know what a word means. [Don’t] worry about feeling bad or making physicians feel bad. It’s your body, your treatment and you’re the one in charge.”