“Chemobrain?! What are you talking about?!”

Complementary Corner

Deborah McTaggart, R.N. Ph.D.,

Winter 2001

The title describes a woman’s reaction to being told by another survivor that problems she was experiencing with memory and concentration over the past two years happened to a lot of other women after chemotherapy. And there was a word for it “chemobrain.” Exclamation points in the title capture her surprise and confusion at hearing the term, and in learning she was not alone. Her words also echo my initial reaction to the term “chemobrain” because it is not one that comes up in the psychological literature on breast cancer.

What exactly are we talking about here? Research information is sparse, though the phenomenon of chemobrain is nothing new to many survivors. At present, there are no studies on chemobrain as a real life phenomenon experienced by women. However, a small but growing number of studies focused on measuring cognitive deficits after chemotherapy, which would include a variety of thinking and memory problems, do point to the need for further study.

Let me try to sketch some answers to three overlapping questions. What is known so far about cognitive changes after chemotherapy for breast cancer? How many women are affected? What difference do these cognitive changes make, if any, in daily living?

Research interest in the cognitive impact in women treated with chemotherapy for breast cancer is growing partly because of concerns for the large number of women who may be affected – and affected for a considerable length of time. Some research suggests that perhaps 25% of women may experience “significant” cognitive difficulties that may last up to ten years. At present, there is limited evidence that test scores for a percentage of women treated with chemotherapy are significantly lower than those of a comparison group, particularly on measures of memory and concentration. Effects on cognitive functioning also appear to be related to the intensity of therapy, such as the amount of drugs taken, but not to other factors such as anxiety, depression, or fatigue. It is worth noting that women who score significantly lower on tests might still have scores that fall within what is considered a normal range of test results. As a clinician, the question that is of most interest: What does all this mean in terms of the day-to-day life of women?
One of the problems with current research is that is it is very much focused on test scores. Even if results happen to fall within normal range, and so could be seen as non-significant, the impact on a particular woman could still be highly significant in her eyes. For example, a woman who prided herself on having an excellent memory might score within the normal range on testing but be having a lot of difficulty in her daily life. Listen to how another survivor in my study described the impact on her life. “I used to have a really good memory. My memory was excellent. But now I can’t remember important appointments at work, even when I make them for the same day. I have to write everything down.”

My particular research and clinical interests lie in this area – understanding how women define and experience chemobrain, as opposed to measuring cognitive function with a battery of psychological tests. The issue is relevant for women in terms of making informed decisions about their treatment, for their career and educational goals, for general quality of life, and for counseling and support services for women and their families. In my research, one of the few areas of conflict that developed between mothers and daughters about mom’s breast cancer centered on disagreements about permission being granted for a daughter’s activities outside the home that were later not remembered by mom.

To develop a better understanding about the nature and impact of chemobrain in the lives of survivors, the BC Cancer Agency, Fraser Valley Centre has initiated a research project. Our hope is that we can come to a better understanding of chemobrain as a real life experience for women that will be of direct benefit to them and to those who care for them. Women who think they may have experienced chemobrain, or are still experiencing chemobrain, and have completed chemotherapy approximately 6 months ago are being invited to participate in an interview study where they can describe their experience.