NYT article on serious illness and patient information

I'm not sure if this is the best forum for this article, so, Moderators, please feel welcome to move it to a more appropriate one.

http://www.nytimes.com/2015/03/17/health/what-pati...

The first few paragraphs, which deal with breast cancer, caught my attention:

"There was hardly any published information on what patients knew about their own cancers, so Dr. Freedman and some colleagues decided to conduct a study. They asked 500 women four questions: Did they know the stage of their tumor, the grade (an indicator of how aggressive a cancer is), and whether it was fed by estrogen or a growth factor called HER-2? ....

The researchers compared the women's answers with their medical records. The results, published in January in the journal Cancer, showed that a little more than half of the women knew their cancer's stage and its estrogen and HER-2 status. Only 20 percent knew the grade. Blacks and Hispanics tended to know less than whites.

The study did not determine why the patients knew so little. 'It's hard to know if doctors aren't discussing it, or if patients aren't hearing it,' Dr. Freedman said."

Did anyone here know about these things until our diagnoses led us to this website and to similar sources of information? The breast cancer info. that the general public receives is laughably simplistic: look for these warning signs, do a monthly self-exam, mammograms save lives. That's about it.

Why don't primary care doctors provide all of their women patients with information on cancer grades, estrogen and progesterone receptors, HER-2, and the implications of positive and negative statuses, lobular carcinoma in situ, ductal carcinoma in situ, and so on? Why isn't this information available at breast cancer "awareness" events? Exposure to and familiarity with those terms over time can help demystify them so that newly diagnosed patients will be more receptive to hearing about them and can ask more informed questions.

I'm guessing that many health professionals believe that too much medical terminology will intimidate and frighten people (i.e., women) and possibly deter them from being proactive about breast cancer detection and treatment. There is probably a little truth in that, but that attitude reeks of earlier times, when most doctors were men and condescension to women patients was the norm--and many of us can testify that those attitudes haven't completely gone away, nor are male doctors the only culprits. But give us some credit, dammit!--we can read a handout, search the Internet for explanations of terms we don't understand, consult Susan Love, et al. for more detailed information as needed. The whole approach to educating people about breast cancer needs a major, major overhaul.

OK, off my soapbox for now--