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By Elizabeth Older | Illustration by Nicholas Wilton

When the doctor says “it’s cancer,” it’s not just the much-feared diagnosis itself that can affect the rest of your life. Right from the start, decisions about treatment can be key to fending off the nation’s second largest killer.

Today, many patients who receive appropriate care can expect to become cancer-free, while more and more are living with the disease much like any other chronic condition. Cancer care in the United States arguably is the best in the world; still, some patients suffer through misdiagnosis, substandard treatment and inadequate follow-up that can reduce their chances for the best outcome.

Diagnosis and treatment can vary widely, research suggests, leading to recommendations that patients and their advocates take proactive steps to ensure that the treatment recommended for their specific cancer reflects the current standards of best care.

Stephen B. Edge, M.D., whose research looks at ways to evaluate and improve the quality of cancer care, says that there’s “no question many Americans do not get good cancer care. It is simply not a matter of debate anymore.”

The single biggest reason is lack of adequate health insurance, says Edge, medical director of the Breast Center at Roswell Park Cancer Institute in Buffalo, N.Y. That affects access to care and often costs patients an early-detection advantage because they delay going to the doctor or don’t get recommended cancer screenings.

“There are certainly these kinds of barriers to care, but our system is very chaotic,” Edge explains. “Coordination of care over time is essential. Cancer care extends over time and requires the input of four or five doctors.”

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