10 ways to make better decisions about cancer care

September 20, 2011, University of Michigan Health System

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. 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 at the University of Michigan Medical School and a U-M Comprehensive Cancer Center researcher.

Fagerlin and colleagues have published a commentary in the that outlines 10 things 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 and better understand their options.

1. Insist on . 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 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.

4. Consider risk as a frequency rather than as percentages. What does it mean to say 60 percent of men who have a radical prostatectomy will experience impotence? 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 7 percent. But if you didn't take the drug, is there a chance you'd still experience that? 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," Fagerlin says.

6. The order of information matters. Studies have shown that the last thing you hear is most likely to stick. 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 your doctor 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 does not help patients make good 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 narrow it down and only discuss with you 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 study author Brian Zikmund-Fisher, Ph.D, assistant professor of health behavior and health education at the U-M School of Public Health.

If you're told the five-year risk of your cancer returning after a certain treatment, ask what the 10-year or 20-year risk is. In some cases, this data might not be available, but always be aware of the timeframe involved.

Explore further: Improving cancer communication to patients

More information: Journal of the National Cancer Institute, Vol. 103, No. 19, Oct. 5, 2011, published online Sept. 19, 2011; "Helping Patients Decide: Ten Steps to Better Risk Communication"

Related Stories

Improving cancer communication to patients

September 19, 2011
Oncologists and their patients are increasingly challenged with making difficult decisions about screening, prevention and treatment. Unfortunately, most patients are neither armed with adequate knowledge nor the means of ...

Recommended for you

Single blood test screens for eight cancer types

January 18, 2018
Johns Hopkins Kimmel Cancer Center researchers developed a single blood test that screens for eight common cancer types and helps identify the location of the cancer.

How cancer metastasis happens: Researchers reveal a key mechanism

January 18, 2018
Cancer metastasis, the migration of cells from a primary tumor to form distant tumors in the body, can be triggered by a chronic leakage of DNA within tumor cells, according to a team led by Weill Cornell Medicine and Memorial ...

Researchers find a way to 'starve' cancer

January 18, 2018
Researchers at Vanderbilt University Medical Center (VUMC) have demonstrated for the first time that it is possible to starve a tumor and stop its growth with a newly discovered small compound that blocks uptake of the vital ...

Modular gene enhancer promotes leukemia and regulates effectiveness of chemotherapy

January 18, 2018
Every day, billions of new blood cells are generated in the bone marrow. The gene Myc is known to play an important role in this process, and is also known to play a role in cancer. Scientists from the German Cancer Research ...

These foods may up your odds for colon cancer

January 18, 2018
(HealthDay)—Chowing down on red meat, white bread and sugar-laden drinks might increase your long-term risk of colon cancer, a new study suggests.

The pill lowers ovarian cancer risk, even for smokers

January 18, 2018
(HealthDay)—It's known that use of the birth control pill is tied to lower odds for ovarian cancer, but new research shows the benefit extends to smokers or women who are obese.

0 comments

Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.