To all the compassionate, skilled physicians and oncology clinicians I have come to know online and in real life since becoming a member of the cancer club, let me just say thank you. You know who you are. You are not the ‘my-way-or-the-highway’ practitioners. You are the ones who actually listen to your patients; ask open-ended questions; factor quality of life issues and patient concerns into treatment recommendations; believe in informed consent and do your best to fulfill it; and give advice that allows your patients to make their own decisions.
But every clinician in the oncology world does not behave in such an exemplary fashion. I know, because I was treated by a few of them. Perhaps I owe them a certain debt of gratitude nonetheless, because the fact that they ticked me off so much is one of the things that turned me into a blogger and an even more staunch patient advocate than I already was.
So, what’s my point? Well, one of the hot topics at this past week’s San Antonio Breast Cancer Symposium was the cognitive impairment that many of us experience after treatment. There appeared to be two main items in this discussion. The first was the news from the previous week of a study showing that chemo brain can be seen on PET scans. This study made a big splash, including one report that featured an interview with my friend and tireless cancer advocate Jody Schoger. There’s a great write-up about this by another sistah, journalist Xeni Jardin, including links to Jody’s interview, here on BoingBoing.
But the second issue that emerged from the SABCS discussion was the potential implications of broadening the discussion of post-cancer-treatment cognitive dysfunction — and perhaps calling it something besides ‘chemo-brain’ — because it affects many of us who did not have intravenous chemotherapy. A report on this latter discussion was published in Oncology Times. I feel a little torn about this. On the one hand, whenever I see cancer related cognitive dysfunction discussed, I often seem to be the person who tediously points out that I have it myself, even though I did not have IV chemo. So the phrase ‘chemo brain’ doesn’t technically apply to me, which leaves me in even more limbo than the one in which my slushy brain has left me. On the other hand, there’s so much we don’t know. For purposes of research and treatment, perhaps we do need a name for the general category of cancer-treatment-related cognitive dysfunction. But we also need a better understanding of — and perhaps more specific names for — the mechanisms which give rise to it, and the differences in how the various forms of cognitive dysfunction manifest themselves. There may be damage arising from chemotherapy that is different from that arising from radiation or surgery, for example, that needs a different name and a different solution.
And then, I thought what I always think after reading about another study that identifies another form of collateral damage: ‘Okay, great. What the heck are we supposed to do about it?’ So I was even more interested in a study published at the end of October in the JNCI called, Treating Chemobrain: Rehabilitation Therapies Emerge. But the thing that most struck me, when I started to read the article, was this paragraph, especially the last six words:
Patricia Ganz, M.D., at UCLA’s Jonsson Comprehensive Cancer Center, traces several stages in the evolution of thinking about cancer and cognition. At first, everyone believed that the blood–brain barrier protected patients from chemotherapy, so patient reports were not taken seriously.
Dr. Patricia Ganz is one of my sanity-saviors. It was reading a study conducted by Dr. Ganz and her colleagues, about the immune system biomarkers associated with cancer-related fatigue, that helped me endure and find help with my own fatigue. Dr. Ganz, if I ever meet you in person, please forgive me if I am moved to break into tears and give you a heartfelt hug. You are one of my research goddesses. And I’ll probably have to give you another hug for reinforcing the eminently crucial notion that patient reports need to be taken seriously. “We are chipping away at getting a scientific database to persuade people,” Ganz said. Yes, you are, Dr. Ganz. And bless you for that. To the doctors who did not do their jobs by informing me before treatment of its possible long-term effects, or listen to me afterward when I was suffering from them, here’s a virtual bitchslap and a link to an old post that summarizes the needless misery you helped put me through: Losing It And Trying To Get It Back.
Which brings me to the next thing that bothers me about all this: it’s old news, people. I realize that a certain amount of replication and informed skepticism is crucial in the oncology research world before any of us should permit ourselves to get really excited about any new findings. This week’s other SABCS kerfuffle — about the ATLAS/tamoxifen study — is a case in point. A great blog post by Beth Thompson sums it up here: ATLAS, Shrug. But it annoys me hugely when study results about a given topic are touted by hype-headlines as though the researchers have discovered a new planet. And cognitive dysfunction is just such a topic.
Way back in 2008, which I realize is practically the Pleistocene Era, a study about chemo-brain was published which included the use of radiologic imaging to verify the existence of chemo brain. The study, Clinical Patterns and Biological Correlates of Cognitive Dysfunction Associated with Cancer Therapy, not only imaged these changes in patients who’d had chemotherapy or brain radiation. The study authors also sought to explain the mechanisms of neurotoxicity associated with cancer treatment, and to identify the patterns of cognitive dysfunction they found in cancer patients. 2008, people. Am I the only person who read this?
Another study, published in 2009, sought to examine the impact of chemo brain and cognitive dysfunction on the lives, work and future health of cancer patients. Its purpose was to help encourage better identification of the problem and better solutions for helping us all cope with it. Maybe 2009 is late Pleistocene/early Holocene. Maybe we’ve all got short memories. Maybe I’m the only demonic nerd that trolls Google for pertinent scientific journal articles when I’m writing certain blog posts. Maybe I should rent my search-maven skills to other clinicians.
Whatever. Bottom line? The fact that cancer treatment scrambles our brains isn’t news. Despite our admitted deficits of concentration, word-finding, and short-term memory, we cancer patients have been saying this for years. Listen up, already. You might learn something. You might even come up with a way to help us.