Study finds disparities in women’s knowledge about their own breast cancer
Here’s an interesting new study from Harvard Medical School and Dana-Farber Cancer Institute which has found a surprising lack of knowledge among breast cancer patients about the basic characteristics of their disease— how advanced it is (stage), whether it is fuelled by estrogen, whether it can be treated with trastuzumab (Herceptin) and the grade assigned by pathologists. The researchers suggest that patients who fully understand their cancer may be more likely to adhere to their treatment regimens.
Lead author on the study published online in Cancer, a peer-reviewed journal of the American Cancer Society, Rachel Freedman, proposed the research after discovering in her own practice that many women did not understand the reasons for the specific treatments they were receiving. Although past research has examined a patient’s general cancer knowledge with regard to basic treatment rationales and reasons for screening, this is the first study to examine how much women know about their own cancers.
“Of all of these factors, a tumor’s grade is likely the least important element for patients to know, although physicians use grade to make decisions about treatments, including chemotherapy,” Freedman said.
Knowing the stage is more important, she said, because it is a measure of the patient’s risk, and knowing the cancer’s HER2 status could help patients with HER2-positive tumors understand why they need to take trastuzumab for a year. Patients with ER-positive breast cancers often take tamoxifen or aromatase inhibitors for many years, so that knowledge might motivate such women to stick to the regimen.
So what are your thoughts on this study? Are you surprised at these findings? How does it match with your knowledge of your own breast cancer?
This study caught my attention too. I was very surprised by the large numbers of women in this study who did not have correct information about their tumor characteristics. It seems that knowing the basics like stage and hormone receptor status are essential both to understanding your prognosis and making decisions about treatment. And it’s not at all surprising that lack of understanding could contribute to patients’ not following through with treatments like tamoxifen or AI’s that need to be taken for years.
Thanks for sharing your thoughts on this Lisa. Looking back ten years ago to my own diagnosis I only remember hearing the word cancer. I think the shock of that stopped me from talking anything else in. Tie this to the urgency to get you under the knife and you hardly have time to figure out the specifics of your disease. It’s only after the dust had settled that I began to understand more, but by then it was too late, choices had been made that couldn’t be undone.
That is an interesting study. I found out more about the implications of my initial cancer diagnosis after having 2 recurrences. Those really woke me up to the severity of my condition and how best to adhere to then-current guidelines (however primitive by today’s standards) to extend longevity. But on initial diagnosis it is often just hard enough to get past the news that you have breast cancer. I was fortunate to have been working at a pharma firm when first diagnosed, so I could ask more relevant questions than those who don’t have that advantage. Thanks for the post. xxx