Talking to Your Doctor About Cancer Care
Talking with doctors about cancer and cancer treatments can feel like learning a new language, and people facing cancer 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, PhD, associate professor of internal medicine at the University of Michigan Medical School and a University of Michigan Comprehensive Cancer Center researcher.
Here are 10 things you can do to become fluent in the language of cancer care and better understand your 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 Dr. Fagerlin.
2 Focus on the absolute risk.
The most important statistic to consider is the chance of something happening 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,” Dr. 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 people with cancer and doctors more likely to favor a treatment, because they believe it to be more beneficial than it actually may be.
Don’t get overwhelmed by too much information. Ask your doctor to only discuss the options and facts most relevant for you.
If, instead, your doctor told you that “the drug will lower your risk of cancer from four percent to two percent,” you would know the exact benefit you would get from taking the drug. Dr. 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. This kind of visual representation can help you understand the meaning behind the numbers.
4 Consider risk as a frequency
rather than a percentage.
What does “60 percent of men who have a radical prostatectomy will experience impotence” mean? Imagine a roomful of 100 people – 60 of them will have this side effect and 40 will not. Thinking of risk in terms of groups of people can help make statistics easier to understand.
5 Focus on the additional risk.
You may be told the risk of a certain side effect occurring is seven percent. But if you didn’t take the drug, is there a chance you’d experience the side effect anyway? Ask what the additional or incremental risk of a treatment is. “You want to make sure the risk number you’re being presented is the risk due to the treatment and not a risk you would face no matter what,” Dr. Fagerlin says.
6 The order of information matters.
Studies have shown that you’re most likely to remember the last thing you hear. When making a treatment decision, don’t forget to consider all of the information and statistics you’ve learned.
7 Write it down.
You may be presented with a lot of information. At the end of the discussion, ask your doctor if a written summary of the risks and benefits is available. Or ask him or her to help you summarize all the information in writing.
8 Don’t get hung up on averages.
Some studies have found that learning the average risk of a disease doesn’t help people with cancer make decisions about what’s best for them. Your risk is what matters – not anyone else’s. Focus on the information that applies specifically to you.
9 Less may be more.
Don’t get overwhelmed by too much information. In some cases, there may be many different treatment options, but only a few may be relevant to you. Ask your doctor to only discuss the options and facts most relevant for you.
10 Consider your risk over time.
Your risk may change over time. “What seems like a small risk over the next year or two may look a lot larger when considered over your lifetime,” says Brian Zikmund-Fisher, PhD, assistant professor of health behavior and health education at the University of Michigan School of Public Health.
If you’re told the 5-year risk of your cancer returning after a certain treatment, ask what the 10-year or 20-year risk is. This data might not always be available, but you should always be aware of the time frame involved.
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This article was originally published in Coping® with Cancer magazine, November/December 2011.