Many Women Diagnosed With Breast Cancer Know Little About Their Condition

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When making breast cancer treatment decisions, you and your doctor take a number of factors into consideration, including the characteristics of the cancer, any other health issues you may have, your menopausal status, your age, and your personal preferences.

A study has found that a large number of women diagnosed with breast cancer know little about the basic characteristics of the cancer:

  • stage
  • estrogen-receptor status
  • grade
  • HER2 status

The study was done by the Dana-Farber Cancer Institute in Boston and was published online on Jan. 26, 2015 by the journal Cancer. Read the abstract of “Racial/ethnic disparities in knowledge about one’s breast cancer characteristics.”

The researchers did phone interviews with 500 women in northern California who had been diagnosed with stage I to stage III breast cancer from 2010 to 2011:

  • 222 were white women
  • 142 were black women
  • 136 were Hispanic women

The researchers asked the women questions about the characteristics of the cancer with which they had been diagnosed:

  • its estrogen-receptor status
  • its HER2 status
  • its stage
  • its grade

The results:

  • 55% of the women said they knew the cancer’s estrogen-receptor status
  • 33% said they knew the cancer’s stage
  • 32% said they knew the cancer’s grade
  • 13% said they knew all four characteristics
  • 14% said they knew none of the four characteristics

The researchers then compared the women’s answers to the information in their pathology reports:

  • 56% were correct about the cancer’s estrogen-receptor status
  • 58% were correct about the cancer’s HER2 status
  • 57% were correct about the cancer’s stage
  • 20% were correct about the cancer’s grade
  • 8% answered all four questions correctly

Black and Hispanic women were less likely to answer the questions correctly than white women, even after the researchers took socioeconomic status and general health knowledge into account.

“We were really surprised by the results,” said Rachel Freedman, M.D., a medical oncologist at the Susan F. Smith Center for Women’s Cancers at Dana-Farber and the study’s first author.

The researchers believe this study is the first time women have been asked how much they know about the breast cancer they’ve been diagnosed with; Dr. Freedman proposed the study after seeing many women in her own practice who didn’t understand the reasons why they were receiving certain treatments.

"Our results illustrate the lack of understanding many patients have about their cancers and have identified a critical need for improved patient education and provider awareness of this issue," said Dr. Freedman. "Improving patients' understanding about why a particular treatment is important for her individual situation may lead to more informed decisions and better adherence to treatment."

Doctors use the cancer’s grade to help make decisions about whether chemotherapy should be recommended. The cancer’s stage is used to figure out a woman’s prognosis (the most likely outcome of the disease) and make treatment decisions. Doctors use the cancer’s estrogen-receptor status to figure out if one of the hormonal therapy medicines would offer benefits. Similarly, doctors use the HER2 status to figure out if a targeted therapy that works against HER2-positive cancers would offer benefits.

If you’ve been diagnosed with breast cancer, the information on the four key cancer characteristics:

  • stage
  • grade
  • HER2 status
  • estrogen-receptor status

will be in your pathology report.

Still, different labs report results in different ways and use technical terms that aren’t always reader-friendly. Plus, because some tests take longer to run than others and not all tests are done by the same lab, you get different test results at different times, which can be confusing.

It’s a good idea to keep all your pathology report results in one place. You may want to start a folder or binder that you put all your test results in. also has a tool on our site that allows you to enter your diagnosis and treatment information. To use it, click on the My Profile link in the upper right corner of this page if you're already signed in. If not, click on the Create an Account link at upper right. Once you create an account and/or sign in, use the My Diagnoses tab to enter information from your pathology report. If you can’t answer all the questions, it’s OK -- you can always answer what you do know and come back later when you get more information.

When you start getting the parts of your pathology report, it’s a good idea to ask your doctor to explain the test results and what they mean for you in terms of treatments and prognosis.

For more information on getting and organizing the parts of your pathology report, see the Test Results and Medical Records pages.

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