In a previous study, doctors reported that only 5 percent of patients experienced moderate to severe symptoms as a result of taking aromatase inhibitors — a tiny fraction of what women reported in the current study.
Asked whether she thought doctors have been downplaying women's complaints, much like patient reports of "chemo brain" were initially dismissed, Wagner said in an email that the situation is more complicated.
Patients hesitate to complain, she said, because they don't want to compromise their care or "distract their doctor from treating their cancer."
Many patients also assume that if their doctors are interested in specific symptoms, they will ask; physicians, meanwhile, think that if patients are bothered by a side effect, they will mention it.
"This sets up the perfect storm for symptoms and treatment side effects not to be discussed," Wagner said.
Richard Frankel, a professor of medicine and geriatrics at Indiana University School of Medicine, isn't surprised by this lack of communication.
"We already know that, depending on the study, between 40 and 80 percent of patients given a medical recommendation — like taking a specific medicine or making certain lifestyle changes — won't follow the recommendation," says Frankel, who specializes in patient-doctor communication.
"The fear of many cancer patients — women and men — is that if they ask for a specific treatment to be stopped, their care will be compromised in some way," he says. " They worry the doctor won't pay attention to them anymore, and they're embarrassed to admit they haven't followed recommendations."
His advice: Ask lots of questions before treatment begins. "Ask about the side effects. Ask if you can talk to other patients who have taken this medication. Discuss the trade-offs between the side effects and the benefits," he says.
With cancer drugs, in particular, "there are no magic bullets, so sometimes the reduction of risk isn't worth the decrease in quality of life. But it helps if you know what to expect before you start," Frankel adds.
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Candy Sagon writes about health for the Bulletin.