10 ways to make better decisions about cancer care

Talking with doctors about cancer and cancer treatments can feel like learning a new language, and people facing cancer diagnoses often need help to understand their treatment options, and the risks and benefits of each choice.

"People are making life and death decisions that may affect their survival and they need to know what they're getting themselves into. Cancer treatments and tests can be serious. Patients need to know what kind of side effects they might experience as a result of the treatment they undergo," says Angela Fagerlin, Ph.D, associate professor of internal medicine at the University of Michigan Medical School and a U-M Comprehensive Cancer Center researcher.

Fagerlin and colleagues have published a commentary in the Journal of the National Cancer Institute that outlines 10 things health care professionals can do to improve the way they communicate information about treatment risks to patients. Here, they explain how patients can tap into these same best practices to become fluent in the language of cancer care and better understand their options.

1. Insist on plain language. If you don't understand something your doctor says, ask him or her to explain it better. "Doctors don't know when patients don't understand them. They want patients to stop them and ask questions," says Fagerlin, who is also a research scientist at the VA Ann Arbor Healthcare Center.

2. Focus on the absolute risk. The most important statistic to consider is the chance that something will happen to you. "It's important that patients and doctors know how to communicate these numbers, and patients need to have the courage to ask their doctor to present it so they can understand," Fagerlin says.

Sometimes, the effect of cancer treatments is described using language like, "This drug will cut your risk in half." But, such relative risk statements don't tell you anything about how likely this is. Research has shown that using relative risk makes both patients and doctors more likely to favor a treatment, because they believe it to be more beneficial than it actually may be.

If, instead, your doctor told you that, "The drug will lower your risk of cancer from 4 percent to 2 percent," now you know that most people won't get cancer regardless. And it will give you the exact benefit you would get from taking the drug. Fagerlin suggests asking doctors for this absolute risk information for a truer picture.

3. Visualize your risk. Instead of just thinking about risk numbers, try drawing out 100 boxes and coloring in one box for each percentage point of risk. So, if your risk of a side effect is 10 percent, you would color in 10 boxes. This kind of visual representation, called a pictograph, can help people understand the meaning behind the numbers. Ask your doctor to draw it out for you, or do it yourself.