I love Susan Gubar’s column Living
with Cancer in The New York Times. Her most recent column is called "Words That Obscure" and it is about some of the terminology used in discussing cancer
care. Some of the points in this column
concern the following:
1. “Medical lexicons that appear to blame the people receiving treatment.” Her example was for a breast cancer drug but I once had a doctor tell me that he would change my treatment after I “failed Sandostatin”. Same concept, different drug. Another quote from her column was “In the topsy-turvy world of cancer, anything ‘positive’ or ‘advancing’ spells trouble. Yet a brain labeled ‘unremarkable’ after an MRI hardly conveys the good news it contains."
2. Terms and drugs that contain horrible and hard to pronounce words. These include cachexia and ascites as well as double named chemotherapy drugs such as sandostatin/octreotide, affinitor/evorolimus or cap-tem (capecitabine-temozolomide). She asks “Don’t we need a rubric for the growing population that must turn down the unpronounceable drugs because they are unaffordable?"
3. Terms created by patients such as “scanxiety” and “chemoflage”. There is a hilarious discussion of acronyms created by patients such as:
·
BBP (bald barfing person)
·
PSHIFTY (person still hanging
in fine thank you)
·
QIBIFA (quite ill but
inexplicably fat anyway) and finally, one that was in the comments, not the
column:
·
PhD (patient hasn’t died)
The link to the article is below:
That’s it for today when the "non-historic" blizzard came to New York City!
Already read this via the foundation but I'm still smiling. Glad to hear the snow wasn't too bad! Our turn over the water apparently !
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DeleteThanks Ronny. I liked your post on the CCF website.
ReplyDeleteGreat post. It's so true! I just did a post on Afinitor and let me tell you.....it's very confusing. All they told me was that it inhibited signaling. ???What IS THAT??? I spent an entire day on the web trying to understand this drug. Oh, and it stops working. Nobody mentioned that.
ReplyDeleteI think that they underestimate us and our uber-informed ilk. :-P