Many Women Lack Knowledge About Their Breast Cancer, Study Says

New research shows that patients are often unable to provide basic information about their diagnosis.

Mary Jo Benjamin likes to be in control.

After she was diagnosed with breast cancer last August, Benjamin has made a point of gathering all the information she needs about her disease and treatment options. She knows the stage and grade of her cancer at initial diagnosis (stage II, grade III) and whether her cancer is positive for a protein known as HER2 (it is). She can rattle off the names of her many doctors and the medications coursing through her veins. She is, in a word, informed. She’s also the exception.

The American Cancer Society cites breast cancer as the most commonly diagnosed cancer in women, yet new research from the Dana-Farber Cancer Institute shows that most patients are surprisingly uneducated when it comes to their disease. The study, published online in the journal CANCER, found that many women—almost half of those diagnosed—were unable to provide basic information about their diagnosis.

Rachel Freedman, a medical oncologist at Dana-Farber and the study’s lead author, says that she was surprised by the results. She says that breast cancer knowledge in general was “very poor across the board.”

“I think that this [study] sheds light on the fact that our patients don’t always understand what we’re telling them, or are not always getting the information in the first place,” Freedman says, adding that this will be a focus of future research. She says she suspects that uninformed women may be less likely to adhere to their treatment protocols.

By studying problem areas in communication, Freedman says that she hopes to eventually identify a way to get crucial information to patients through an intervention such as a smartphone app. “It’s hard to imagine that having knowledge about your own cancer is a bad thing, even if it just means empowerment and confidence and trust in your medical team,” she says. “We ask a lot of our patients, and some of our treatments can go on for up to 10 years. So if a woman really understands why she needs to be taking that medicine, maybe it will help her stick with it.”

Just ask Benjamin, who recently started the second phase of her treatment. She was initially treated last October—Freedman is her physician—with a 12-week course of chemotherapy and Herceptin, a drug commonly used in the treatment of HER2-positive cancers. Although she experienced hair loss and other negative side effects, Benjamin said she felt “pretty good” by the end of it. She began a new round of chemotherapy in January, which she says has been significantly more challenging.

“It’s certainly helping me now knowing that what I’ve done so far has worked,” Benjamin says, adding that her tumors have decreased in size. “If I weren’t feeling badly, how would I know that the treatment’s working? I think having some knowledge does help you stick to it. I really do.”

Freedman says that there are things patients can do to make sure they are informed about their disease including using the resources available on websites like the American Cancer Society and Susan G. Komen. She also recommends that patients ask a friend or family member to accompany them to their physician appointments to help listen to and process what, for many people, can be an overwhelming amount of information.

“I think for the most part in my own practice, women want to understand their disease,” Freedman says. “I think taking the time to ask the questions to make sure you really understand your cancer and why the treatments that are being recommended are being [used] is important information to have.”