When I began researching chemobrain in January 2007, it was clear that the field of study was in its infancy. There was a growing body of serious research into what scientists call neurocognitive late effects — and this research was exploding all over the world. But some cancer patients and survivors I talked to still reported that their doctors dismissed their complaints.
As Dr. Harold Burstein at the Dana-Farber Cancer Institute in Boston told me, chemobrain is part of the lore of breast cancer, and any clinician who sees breast cancer patients has heard the term — and, he says, has heard patients talk about this bedeviling cluster of symptoms. Preparing a PowerPoint presentation in 2007 for the 10th International Conference on breast cancer therapy in St. Gallen, Switzerland, he did what he calls “a highly unscientific survey” of 24 of his breast cancer patients. Eighty percent of them told him that they believed that chemotherapy had made it harder to concentrate or remember names. Some had particular trouble with numbers, others could not follow a single train of thought for long. Many felt spaced out and easily distracted.
However, he added, the literature is messy — at least, the literature that doctors pay attention to. Think of the difficulty in comparing apples and oranges: some studies follow a group of people over a long period of time, other studies are a snapshot of a particular moment. Cognitive tests are designed differently. (And sometimes the tests themselves are daunting — could you complete a drawing of a geometric figure while stuffed inside a claustrophobic MRI tube?)
But that is changing. Researchers are designing controlled studies and experimenting in the lab, and publishing scores of new articles in peer-reviewed journals — the gold standard for scientific work. Researchers like Christina A. Meyers, PhD, and Jeffrey Wefel, PhD, at the M.D. Anderson Cancer Center in Texas, Tim Ahles, PhD, at Memorial Sloan Kettering Cancer Center in New York, Sanne Schagen, PhD, at the Netherlands Cancer Institute in Amsterdam, and Robert Butler, PhD, at Oregon Health & Science University in Portland. (Dr. Butler, who specializes in pediatric hematology and oncology, was cited with gratitude by many parents I interviewed. He listened to them. He helped them find answers. More on late side effects in teen-agers in another post.)
It’s seeping into websites and into the popular press — what the rest of us non-doctors read. Although no one should begin, end, or alter their treatment based on a newspaper article, the media echo chamber helps push patient empowerment movements forward. My colleague at the New York Times, Jane Gross, called attention to chemobrain with an important front-page article in April 2007.
When medical research collides with a burgeoning patient empowerment movement, the results can be powerful. So let the conversation flow.