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--
Comments
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Why would they provide all this specific information on breast cancer and not any one of many other diseases? Should they do they same for all the autoimmune diseases? I think primary care doctors have their hands full with their ten minute visit slots and everything else they are supposed to educate you on. You're much more likely to die of heart disease. If you don't have cancer and don't think you'll have it, you more than likely would not retain the information anyway because you would not believe it to be relevant to you.
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Melissa, you're quite right. I should have been more clear: I don't mean that I think primary care doctors should spend a lot of person-to-person time educating each patient on breast cancer; rather, I think they should offer handouts with information on the many facets of BC, like the sheets we often get that describe how to do self-examination,. Similarly, public service ads in magazines and newspapers could contain more substantive information than "watch out for idimpled skin or a discharge from your nipple." Those Pinktober walkathons and other events would be ideal places to disseminate that kind of info. also.
I never knew that "dense breasts" or "calcifications" were causes for concern until I was well into my 40s. I'd like to see women become conversant with these terms and their implications at young ages, well before they start having regular mammograms. Certainly, heart disease and lung cancer claim more women's lives than breast cancer does, but a disease that one out of every eight women will have is not insignificant. We deserve more than simplistic slogans and dummied-down, redundant factoids.
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I was given all the information listed above at my diagnosis. My surgeon explained everything in detail also. Actually she explained it twice as I could not grasp that triple negative was bad because a negative test result sounded like a good thing. I was also handed a pathology report and I used that to Google the heck out of every line item listed. I've been very well informed in every aspect on my treatment. I can't imagine that I'm in the minority.
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I was completely ignorant when I was dx'ed. My bad. I had a large lump for many years that never caused any of my drs concern and never appeared on my mammo, so I ignored it til the skin dimpled around it and I still assumed it was menopause changes to that area.
I was sure that the Bx was going to be benign and was shocked to hear the words...............................
I can't blame my drs for 'missing' the lump, but they could have bought up a conversation about BC, If I was more informed I wouldn't have waited til my PCP peeked at my cleavage and saw the dimpling and sent me for a mammo. That f--king lump was a part of my breast for so long.
I blame myself for the ignorance and the grade 3b Ca. All I can do is educate my DD. (and kick my self in the ass.
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