Watchful Waiting: Nancy’s Story

Most people’s first reaction to a cancer diagnosis is wanting to get rid of the disease as quickly as possible. When 47-year-old Nancy Hughes was diagnosed with follicular non-Hodgkin’s lymphoma in 2007, she went into fight mode — but her doctor had another idea.

Nancy Hughes
Nancy Hughes

MSK hematologic oncologist John Gerecitano instead recommended the “watch and wait,” or active surveillance, approach. Nancy, from Hampton Bays, New York, would be monitored regularly and put on chemotherapy only if her disease progressed.

As a result of decades of research, doctors now know that patients with certain types of cancer may not need immediate treatment. These patients are best served by active surveillance (also sometimes called watchful waiting). The approach usually involves regular testing to keep an eye on a tumor’s behavior over time. Only if symptoms develop or tests indicate the cancer is growing or changing is further treatment initiated.

“I remember thinking, This is insane. I have cancer, you have to get rid of it,” the mother of two recalls. “And I think that’s everybody’s initial response.”

That’s a reaction Dr. Gerecitano often finds himself receiving whenever he advocates a watch and wait approach for lymphoma patients. “This recommendation, especially in lymphoma, doesn’t mean we’re telling patients there’s no treatment for them,” he says. “We know from the data that harm will not come from waiting.”

Active surveillance is a common treatment strategy at MSK for lymphomas and other cancers that pose no immediate threat to a patient’s health.

“Some lymphomas can be treated like chronic conditions such as diabetes or high blood pressure, where we manage them over time,” says Dr. Gerecitano, who recently led a trial for venetoclax, a new FDA-approved lymphoma drug.

Even though that’s good news, many patients are skeptical about holding off on active treatment. “It causes understandable anxiety when you tell patients they have cancer but they should sit on the sidelines,” he says. “We live in a culture in which cancer is seen as an enemy that has to be actively fought.”

But the surveillance is called “active” for a reason. Usually, patients are first assessed every three to six months. Once doctors understand the disease’s growth pattern, they can sometimes space patients’ visits further apart — but they’re always carefully monitored.

At MSK, lymphoma experts typically recommend active surveillance for around 30 percent of patients. However, if and when a slow-growing lymphoma progresses, “it’s not one-size-fits-all,” says medical oncologist and lymphoma expert Alison Moskowitz. “Our choice of therapy depends on the individual patient and characteristics of the disease.”

When determining a treatment approach, Dr. Moskowitz and her colleagues are taking a mental look into each patient’s future. “We’re never thinking, OK, what am I going to do right now? We’re assessing our choices more broadly and long term,” she says. “We’re asking, ‘What am I going to do now, and then what am I going to do if I need to treat this person again? What are my next three steps?’ We want both to help prevent patients from developing treatment resistance and to ensure that they remain eligible for future therapies. Our goal is to deliver precisely the care our patients require — not too much, not too little, and only when they truly need it.”