Everything makes sense. In December when I was on a rant over that dismissive chemobrain presentation in San Antonio....... and then, I expressed my delight to see Dr. Ganz waiting at the microphone to ask those questions..... yes, it all makes perfect sense.
There is a very important study in the current issue of The Journal of the National Cancer Institute. Advance online access to the publication was available last week. I have a copy of the publication and, for that matter, the accompanying editorial. The thing is..... it was submitted on September 26, 2012. The lead researcher? Dr. "Patti" Ganz. She had already completed the study, analyzed the results, prepared the article and submitted the manuscript. This, I believe, is what might be referred to as "an ace in the hole."
Science Daily has an excellent synopsis of the study in an article titled Scientific Basis for Cognitive Complaints of Breast Cancer Patients. The press release from UCLA can be found here. In addition to the study results, there is an accompanying editorial written by Christina Meyers who wrote a book that, yes, I do own. As long as I'm on the topic of books, it's noteworthy that Dan Silverman is a co-author of the paper. He is also the co-author (with my dear friend, Idelle Davidson who wrote a guest post for this blog) of Your Brain After Chemo which has become a bible to so many of us.
IF anyone is still with me after I submerged myself into click link hell, I'm back and now, it's time for the results. Blogger: Dim The Lights and Let's Go!
Neuropsychological testing was done in a group of very stringently selected women. I subjected my own brain to that battery of tests before I began writing this blog. They are nutty and apparently, not quite sensitive enough to pick up the subtleties that may be troubling many of us. Unless, of course, you know what you are doing and you know what to look for and you know how to make adjustments and in the case of Dr. Ganz, that would be check, check AND check. In addition to the testing, the women were also asked to complete surveys to report how they perceived certain specific issues like memory and executive function. A "matched" group of healthy women were recruited to undergo the same neuropsych testing and to complete the same surveys. The healthy women were similar in age, ethnicity, marital status, BMI and depressive symptoms.
I've just completely oversimplified what is a quite complex testing regiment but my purpose for sharing this story isn't to regurgitate the scientific intricacies. I'll leave that to Science Daily (and hopefully, Idelle). What strikes me? Dr. Ganz' study shows that we ain't just complaining for the sake of complaining. The things that are wreaking havoc in our minds are now being accounted for on the self assessments AND these same issues are actually showing up as real deficiencies on those over the top, brain dripping out of my ear tests.
In really simple terms? Patient complaints, more technically referred to as PAOFI (Patient's Assessment of Own Functioning Inventory) would appear to be reliable indicators. Simpler still? Believe the patient. We are not making this stuff up! To the credit of Dr. Ganz, she has been extolling the importance of patient reported issues for quite some time. She now has science to support what has long been suspected by a number of researchers who are well versed in the world of chemobrain. Self-reporting may be the best way of obtaining an accurate assessment of the problems we are experiencing.
Christina Meyers makes a number of brilliant, albeit disturbing observations in her editorial. She notes the problem, while frequently subtle, occurs in many patients before, during and long after treatment. She believes the problem may be understated (I concur and have been saying that for a long time). Dr. Meyers also notes that those tests are done in a distraction-free, one on one setting which in NO WAY resembles our real worlds. She also notes that mental exercises marketed to improve cognitive function may not be translating into our real worlds. We may be getting better at the tests but it may NOT be helping the real world issues.
Perhaps her most important observation? While research is necessary and important to untangle the mess left behind so that our brains might be restored to something resembling their pre-cancer abilities, she states that "a full understanding of the biology.... is not necessary for effective interventions to be employed."
Pay close attention to that phrase in quotation marks. Pay very very VERY close attention. Take a little time to understand about brain neuroplasticity. There is a very easy to understand explanation on the website for Omega Institute where they are having a weekend seminar in June. I love Rhinebeck and I think I just filled my calendar for June 21, 22, 23.
And, my calendar is filled for tomorrow, too. Plan to be here for a conversation about neuroplasticity of the brain and some thoughts about interventions that may be a bit more effective than the old, "put your keys in the same place every day."