I had the good sense to tape the session on my iPhone. I can access the slides. I've listened to the presentation no less than three times hoping to tease out ANY information that might lead to us in a NEW direction. Instead, it would appear that this presentation, at least in my very un-scientific mind, is nothing more than invalidating, insulting, irresponsible and a precisely WHY patients should be involved in steering at least some of the research.
I'm neither a molecular biologist, immunologist, histologist, or oncologist and I do not proclaim to get the gist of any of that stuff. At best, I listen and learn from the genius-ologists and I listen carefully. A true mark of brilliance? Someone who is so ahead of those curves, yet is still able to take the most complex topic and compare it to something in every day life. Dr. Love is a genius at that stuff. So were every one of the mentors who sat with us from 5:30 until 7:30 each evening to review all of the presentations. What was alphabet soup with combinations of numbers and letters being bantered about each and every day, came to life thanks to the dedication of the mentors in those sessions. I can't thank them, or for that matter, The Alamo Breast Cancer Foundation, enough for helping me be a better advocate.
Back to business. It's being splashed everywhere. I wrote this as I was waiting for the presentation to begin. I had a chance to look at the abstract in advance and I had a pretty good idea of what was about to be presented. I didn't think it was ethical for me to break into the nitty gritty until the researcher did her presentation. I'm not a "press person" so I don't know what is proper etiquette and what is Bernstein-Woodward-ish. So I was cryptic.
Now? Not so much.
Here are just some of the facts regarding the study particulars:
- A whopping 97 women were studied in this trial
- 28 of them were chemotherapy patients
- 37 of them were radiation only patients
- 32 of them were healthy
- The basis of the study is that worry impaired cognitive function, thus increasing fatigue, thus messing up their brains. It was the worry which was "present before the treatment began."
- The "initial evaluation" in the cancer patients was done approximately 24 days AFTER surgery but prior to the commencement of any other treatment
- They were all put into an MRI machine and asked to do tasks within that clanking tube
- Most of the women were treated with anthracyclines
- How can any responsible journalist splash a headline based upon the observation of 65 women in a vacuum. In other words, let's isolate this to fatigue (FYI... I DID type that as Fati QUE.... and if you don't know why that's relevant, go have a laugh at this blog post where one of my bulleted points was the my issue with THAT word. Fatigue....and you know you have chemobrain if.....)
- Nothing was mentioned about the drugs methotrexate or fluorouracil and it was already established in a TWENTY year follow up that the CMF cocktail seems to cause "issues" as seen here at Cancer.Net. I had CMF.
- Other studies have indicated that the CANCER itself may be releasing proteins/chemicals (not going to go all technical with the terminology) creating additional physiological issues in our brains. In other words, the cancer cells began to wreak havoc. The radiation added to it, the endocrine therapy added to that and the chemotherapy is the cherry on top.
- Then there's that whole crossing the blood barrier and actually getting INTO the brain.... Here's what Mark Noble did in Rochester in looking at the CF of the CMF.... BrainFacts.Org
- And what about the "M" you ask? Here, from Nursing Center Journal: Patients getting chemotherapy drugs known to be toxic to the central nervous system (central neurotoxicity) have a greater incidence of cognitive impairment. Some drugs, such as cytarabine and methotrexate, cause neurotoxicity by crossing the blood-brain barrier and causing direct damage to neurons in the cerebral cortex.
Now to get to the real issue... the reason for the study. ANXIETY induced fatigue resulting in cognitive issues causes no difference before or after chemotherapy???? Well let's look closer. Did we examine these cancer patients truly before treatment? Not really. Note that the initial evaluations were done almost a month AFTER surgery. That means, pay attention here folks, this is the important stuff.... these woman already did the runaway train thing. Bad mammo, call back, biopsy, call back, you have cancer, schedule nine million appointments, decide upon surgery options, stare down the gun of chemo or radiation, learn to live with "I have cancer" ... and WAIT and WAIT and WAIT some more.
I can still taste the waiting and I can tell you, the waiting was a pretty horrible part of the cancer program. It's riddled with anxiety. THEN, for giggles, lets throw ourselves into an MRI tube AND do tasks just because we have nothing else to do..... And, being in an MRI machine isn't stressful all by itself?? And what about the anesthesia. Are we sure there are no residual effects?? Ditto contrast dye.
Listen, I am all for understanding what is happening. I'm all for informing patients of the possibility of cognitive issues. I'm all for making sure these patients realize their LIVES are most important and there are work around solutions for many of the problems. I'm also all for problem solving. This study didn't add anything to the conversation. We already accept as a premise that anxiety and depression, fatigue, the cancer diagnosis itself, radiation, chemotherapy, hormone therapy are all part of the chemobrain paradigm.
We didn't really need a study to confirm this. We needed a study to find ways to prevent it in the future and help those of us whose issues are bad (and somewhat worsening?) ....
THIS folks, is why patients need to be actively involved in what research gets studied. Did any of us need to see this? Didn't WE all know and accept this already? Yes, anxiety and fatigue are huge. All this study did? Add MORE stress as those headlines continue to pile up and each one of them seems so dismissive.
What was NOT dismissive? Dr. Patricia Ganz walking up to the microphone to pepper the researcher with questions about the validity of the points in the presentation. And the researcher acknowledging her own trepidation as she watched "Patti Ganz" (as she called herself) approach the microphone. Coincidentally, Dr. Ganz presented on Monday in an educational session and she told the whole story and included all factors....
Basically, it's complicated. And more basically, it's irresponsible journalism. Major props to Medscape for finally printing THIS which hit my feed yesterday as I was outlining this post. They tell the whole story. In case you don't have your own login... it's printed below. They have peer comments. I underlined them... Judge for yourselves. Just note, NO one in this study was given "MF" and that, quite frankly is all I have to say about THAT.
I've got plenty more to say about the rest, but this rant is over. I'm feeling a bit like Michael Corleone at the end of the Godfather, don't tell me about my cognitive issues because:
"It insults my intelligence and it makes me very angry."
Before I turn the page over to You Tube and Medscape, one final note: I'll accept the whole "Cancer Brain" thing as a name changer, game changer, too. Except, there are "levels" to everything in life. Knowing that the damn M-F (er) wreaked havoc on things inside my skull.....Me? I'll stick with ChemoBrain... because I WAS fine for a while... and then, I wasn't. And no, I'm NOT tired, my anxiety is well controlled.......EXCEPT when I'm angered by skewed numbers and misleading stories.
Time to turn this over to some third party people.....
Medscape, the only RESPONSIBLE piece of journalism about this study, is below the embedded video. This would be a good place to share my conversation with Dr. Jay Harness of Breast Cancer Answers while in San Antonio. We talk about chemobrain and The Jody Study (the one that actually hit the national nightly news.... and JODY is the hero of the piece for truth telling!)
Here's the You Tube link in case the embedded thing doesn't work. My interview is at the 25 minute mark:
And now, with my own skewing of the story... vis-a-vis: the underlined sections, Here's MEDSCAPE:
SAN ANTONIO, Texas — New brain imaging research suggests that "chemo brain" is an inappropriate label for the neurocognitive deficits often reported by cancer patients. That's because reduced brain function caused by fatigue and worry is often present even before chemotherapy begins, according to a new study. However, the research, presented here at the 35th Annual San Antonio Breast Cancer Symposium, was greeted with plenty of criticism.
The lead researcher did not dismiss the concept of chemo brain. "Cognitive changes do occur in women treated with chemotherapy," acknowledged Bernadine Cimprich, PhD, RN, associate professor emeritus at the University of Michigan School of Nursing in Ann Arbor. "But pretreatment-altered neural activation and fatigue can also contribute to cognitive problems," she said during a meeting press conference. "This is a strong argument, in our estimation, for early intervention.... Existing interventions to reduce stress and fatigue may alleviate neurocognitive problems over the course of breast cancer treatment," Dr. Cimprich explained.
The research involved functional magnetic resonance imaging (fMRI) in breast cancer patients performed 24 to 34 days after surgery and before chemotherapy (n = 29) or radiotherapy (n = 37). The control group consisted of 32 age-matched healthy subjects. The prechemotherapy group reported more severe fatigue before treatment than the control and preradiotherapy groups ( P < 0.01); this increased after chemotherapy, but remained stable in the other groups. Dr. Cimprich said the study shows a "moderately strong" correlation between fatigue and cognition in all study participants at baseline and at 5 months ( P < .001). "The lower the level of activation, the greater the increase in fatigue over time....
This was an interesting finding for us; you rarely see a correlation between level of activation and any kind of affective or experiential measure," she noted. Women awaiting chemotherapy are more vulnerable to cognitive problems related to worry and fatigue, and these problems can begin before any adjuvant treatment, she said.
Critics Weigh In Audience member Patricia Ganz, MD, professor of health services and medicine at the University of California, Los Angeles, questioned the study's conclusions. The chemotherapy patients had larger tumors at baseline and had undergone more extensive surgery — both of which can influence cognitive function, said Dr. Ganz. "We know that surgery itself can lead to an increase in proinflammatory cytokines," she explained. "It may be that proinflammatory cytokines, which...are associated with fatigue and cognitive dysfunction, are influencing the underlying biology," she noted. "The chemo patients likely had reconstruction with mastectomy, which causes much more tissue trauma," she told Medscape Medical News. "I am not sure [the researchers] used covariates in the analysis, which could have explained differences in fatigue, and they did not always show P values when they compared groups,” Dr. Ganz added.
Another expert admired the study but also has reservations. "Our field is in need of prospective studies like this, and prospective fMRI studies are especially sparse," Sanne Schagen, PhD, director of psychosocial research and epidemiology at the Netherlands Cancer Institute in Amsterdam, told Medscape Medical News. However, other studies that have reported prechemotherapy cognitive impairment have failed to find a link with fatigue or anxiety, she said, warning against drawing strong conclusions from this study. The researchers conclude that pretreatment cognitive compromise and fatigue are key contributors to the cognitive impact often solely attributed to chemotherapy. However, Dr. Schagen explained that "it is important to realize that the correlations on which these conclusions are based are very weak." "Fatigue may be contributory factor, but to conclude that it is a key contributor is, based on the current data, in my opinion, too strong," she added.
Another breast cancer clinician described the issue as a "multifactorial problem." It's "very interesting" that we see fatigue and cognitive dysfunction in breast cancer patients even before treatment, said Kent Osborne, MD, director of the Dan L. Duncan Cancer Center and the Lester and Sue Smith Breast Center at Baylor College of Medicine in Houston, Texas. "I've often wondered whether some of these cognitive dysfunctions that have been reported with all kinds of different medicines for cancer are as much related to this problem of worry, anxiety, and fatigue as they are to the treatment," he added.
Study Details All of the study participants had noninvasive breast cancer, but more patients in the prechemotherapy group had a higher stage of disease, which is what "you would expect with standard treatment approaches," said Dr. Cimprich. Specifically, stage II and IIIa disease was more common in the prechemotherapy group than in the preradiotherapy group (82% vs 16%); earlier stages were more common in the preradiotherapy group (18% vs 84%). In addition, more women had undergone mastectomy in the prechemotherapy group than in the preradiotherapy group (46% vs 5%), whereas more women had undergone breast-conservation surgery in the preradiotherapy group (54% vs 95%). In the prechemotherapy group, 79% of women received a regimen of doxorubicin and cyclophosphamide followed by docetaxel (AC-T); 18% received a regimen of cyclophosphamide and docetaxel (CT), and 3% received a regimen of doxorubicin and cyclophosphamide (AC).
Brain function was tested while subjects performed a 30-minute verbal working memory task (VWMT) in the scanner. Immediately after that, they were asked to self-report cognitive function (using the Attentional Function Index) and fatigue (using the Functional Assessment of Cancer Therapy-Fatigue). Subjects were tested again 5 months from baseline (about 1 month after the end of chemotherapy). The median age of the patients was 50 to 53 years, and 79% of them were white. Before treatment, all patients were less able than the control subjects to activate the left inferior frontal gyrus — the brain region critical for working memory ( P < .05). "The prechemotherapy group had the lowest level of activation compared to the controls; the preradiotherapy group fell in between," Dr. Cimprich reported.
Before treatment, the patients performed worse than control subjects on the VWMT (error rate, 10.0% vs 6.5%; P < .05). After treatment, cognition improved to the level of the control group in the preradiotherapy group, but the error rate worsened to about 12% in the prechemotherapy group. "Women who were less able to perform this working memory task suffered greater fatigue over time, regardless of treatment," she said. "So this low function before treatment predicted severity of fatigue later on," Dr. Cimprich noted.
The study was funded by the National Institutes of Health and the National Institute of Nursing Research. Dr. Cimprich, Dr. Schagen, and Dr. Ganz have disclosed no relevant financial relationships. Dr. Osborne reports being a consultant/advisor for Genentech, Novartis, and AstraZeneca. 35th Annual San Antonio Breast Cancer Symposium (SABCS): Abstract S6-3. Presented December 7, 2012.