Coping with Active Surveillance

MSK internist Debra Mangino

MSK internist Debra Mangino discusses next steps with a young woman in active surveillance for breast cancer.

It’s the dreaded diagnosis: cancer. But instead of surgery, radiation, or another invasive treatment, your doctor recommends that you enroll in a program of active surveillance, also known as watchful waiting.

This can be positive news in many ways. With active surveillance, you have the benefit of not having to go through surgery or experience uncomfortable side effects from medicines or radiation therapy. Instead, you agree to a regular schedule of check-ins, scans, or other tests to make sure your cancer isn’t growing or changing over time. 

Cancer sometimes grows very slowly or not at all. As doctors learn to better predict whose tumors will get bigger or spread, they’re increasingly recommending active surveillance for patients with certain early forms of prostate cancer, breast cancer, thyroid cancer, lymphoma, and skin cancer.

“Active surveillance is a great choice for a lot of people,” says Memorial Sloan Kettering psychiatrist Andrew Roth. “But it’s not for everyone.” For some people, just knowing there’s something abnormal going on in their body makes them very anxious. “With active surveillance, there’s a burden in knowing that things aren’t neatly tied up and behind you,” he explains. Even if it’s not likely, “you have to face the possibility of needing more invasive treatment down the road.”

He offers these ways to cope:

Leave the Worry to Your Doctor

We live in an information-saturated world, and it’s easy to question and second-guess a doctor’s advice. Some people travel to different doctors for testing and second opinions, for example. Or they spend hours on the internet reexamining their options.

Dr. Roth recommends that once you find a doctor you trust, try to accept his or her conclusion that active surveillance is the best choice for you. “It’s hard,” he explains, “but if you can, let the doctor worry for you.”

Then, he says, focus on what you can control. For example, ask the doctor to explain how your age, general health, and family background contribute to active surveillance being right for you. He or she can also put into perspective any confusing statistics about treatment choices and outcomes.

“The more the doctor can help you understand why active surveillance is a good choice for you as opposed to other treatment options, the more confident you’ll likely feel,” says Dr. Roth.

Don’t Go It Alone

When dealing with cancer, emotional support is crucial. So when it’s time for your regular surveillance checkup, Dr. Roth recommends asking a friend or family member to come along for companionship and comfort.

This person can also take notes — by keeping track of what the doctor says, you’re less likely to get confused or distort the facts later on. Dr. Roth suggests repeating back what you’ve heard before the appointment ends. “Try saying, ‘So what I hear you telling me is….’” This can help with a reality check later on, if you start to question what the doctor actually said.

Reaching out to other people in active surveillance is also a good idea, he adds. Join a support group. Professional counseling can also help, as can meditation, relaxation, yoga, and other activities, all of which are offered through MSK’s Integrative Medicine Service.

Consider Lifestyle Changes

“Being in active surveillance is a great opportunity to start taking better care of yourself,” adds Dr. Roth. Make sure you’re eating well and exercising, “without going bananas.” The feel-good endorphins will help you handle stress better. “And while you’re exercising, you’re at least not focusing on cancer or being in active surveillance,” he adds.

Find Distractions

It’s normal to worry a bit, notes Dr. Roth. You may occasionally feel buyer’s remorse. When this happens, he suggests reminding yourself that if there were a more “right” decision, your doctor would have said so at the start. “Don’t miss enjoying life because you’re worried about what might happen down the road!” he adds.

Discover the power in keeping busy. Distract yourself with whatever works for you — crossword puzzles, cooking, listening to music, anything that keeps your mind occupied.

“And then think about what you’ve gained,” he suggests, like freedom from the side effects and other difficulties that can happen with surgery and other more invasive treatments.