Breast cancer patients often don't know details about their tumor

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chemotherapyMany breast cancer patients have a limited understand of their disease. In her new study, Dr. Rachel Freedman and colleagues of the Dana-Farber Cancer Institute in Boston surveyed 500 women in northern California who had been diagnosed with breast cancer between 2010 and 2011. Participants were asked about their tumor grade, tumor stage, and receptor status (breast cancer subtype). The researchers controlled for factors including education level.

About a third of participants said they knew their tumor's grade, while over 80 percent of the participants said they knew the tumor stage. About half of the women surveyed said they knew their estrogen status, while about a third said they knew their human epidermal growth factor receptor 2 (HER2) status.

However, only 8 percent of women overall answered all four questions correctly. Only 56 percent of women reported the correct estrogen status and 58 percent reported the correct HER2 status. 57 percent reported the correct tumor stage and about 20 percent reported the correct tumor grade. The lack of knowledge was more pronounced in minority women, the researchers note. The study was published in the journal Cancer.

"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," Dr. Freedman stated. However, she added, "What's really nice about finding something like this is that it's a modifiable problem."

Patients not knowing such specific details about their tumor does not necessarily mean worse outcomes, especially because their doctors should be knowledgeable of the details of their condition. However, Dr. Freedman says that better understanding by patients may help women to understand treatment decisions and take medications as directed. Also, patients who understand the basis for their treatment are generally more satisfied with that treatment, and have improved trust and confidence.

ACSH s Dr. Gil Ross added this comment: I believe that women diagnosed with breast cancer have enough on their minds without being able to recite the hormonal status and HER2 receptor status of their tumor. Of course, many women will be obsessed with this same information; but most will not. If the treating physician believes the patient herself will benefit from knowing the specifics, perhaps as an inspiration to following through on recommended treatments, that should guide his or her approach. One thing is for certain: knowing those details is not optional for the doctor."