DCIS: Was I a Medical Illiterate?

I recently read an article in Proto magazine called Comprehension Test, that described some tests given to people who possibly read below sixth grade level, to see if they understood possible written directions about their treatment and medications.  

But there was more:  about people who are not medically literate, and a few words about people who are old, sick, awakened exhausted in the hospital, and so on.  (Of course, I bristle and snarl when someone groups people as "old."  One may be bewildered, hard of hearing, or with grey hair a few birthdays before middle age.) Oh, and there was a tactful mention that an educated person may still not be medically literate.

When I wrote to the editor, I called myself medically literate, because of where I've worked, what I did there, and research I do. 

Then I described the day I went to talk with a radiation oncologist and ended up with marks on my breast, pounds of literature, a permission slip I'd signed, and the vague idea I'd already been in the radiation treatment room.  Too many people telling me too much, bewilderment, sensory overload, and serious "overwhelm."  

Neither the books, the web, nor the video they showed prepared me for what would really happen that day and on one subsequent treatment day.

Do other women really search the net and make a good purse list of questions on breast cancer before they report for the "callback" mammograms?  Am I the only one who didn't demand to know exactly what would happen in the radiation center that day or later?  

How much medical literacy are we responsible for?  How much should the doctor be aware of what we are able to take in?  Who is responsible to be sure a conversation and not a speech is taking place?  

Long ago, my beloved California primary doctor told me:  It is important to be heard!  But this is not the first time a diagnosis was so serious that I needed the doctor to make sure I knew all that would happen next.




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