We identified 145 online forum comments. Comments were posted by single online usernames, and all included first-person pronouns (eg
As shown in
Topic modeling of free-text comments. Latent Dirichlet allocation (LDA) analysis of online comments identified 2 topics related to cognitive effects of cancer and its treatments. Beta = probability that the term belongs to that topic. We interpreted topic 1 as reflecting external factors and topic 2 as indicating internal factors leading us to hypothesize regarding potential contribution of locus of control to subjective cognitive impairment. Figure created using ggplot in the R Statistical Package.
The following major categories were identified:
The online comments largely described cognitive symptoms along with related physical symptoms (eg, fatigue, neuropathy). The most common cognitive symptom discussed was impaired memory, specifically trouble with short-term memory or remembering things “on the fly.” One person described, a “Total inability to cope with remembering things” and another said, “My mind couldn’t remember things that used to be easy for me.” Other comments frequently mentioned word-finding problems, difficulty concentrating, and a slowness or lack of mental sharpness/speed. People also suggested explanations other than chemotherapy for their symptoms such as other cancer treatments (eg, tamoxifen, radiation), having too much on their plates (ie, information overload), getting older, or developing dementia.
Throughout the online comments, many people discussed the strong emotional and psychological impacts of their cognitive symptoms and changes. These were sometimes described in the context of feeling worried, upset, anxious, or scared of their cognitive symptoms. Other times symptoms were described in the context of extreme frustration, feelings of anger, and being overly stressed. One person said, “It’s a total frustration” and another said, “I am really suffering.” Additionally, many described feelings of embarrassment, loss of confidence or self-reliance, or even feeling nervous about their own cognitive performance. One person illustrated this point by saying, “Cancer and memory loss can corrode my intellectual self-esteem and only compound the problem.”
Many people referenced ways of coping with their cognitive changes by engaging in brain-healthy behaviors such as exercise, stress reduction, or puzzles. Others referenced using different medications such as Ritalin, or supplements (eg, CoQ10) to improve their cognitive stamina and function. Others talked about utilizing compensatory strategies for better functioning in their everyday lives such as making lists, using smartphone capabilities, slowing down, and planning more.
Most of the online comments related to the idea of validating that chemobrain, or cognitive changes related to cancer and cancer treatment, are very real. Different words were used to describe the phenomenon such as “chemo haze,” “chemo fog,” a “scrambled brain,” and “brain is total mush.” Some people voiced frustration with lack of awareness or validation from their providers and noted that, “it would have helped if there had been more awareness [about chemobrain]”. Similarly, people made sure to emphasize that those suffering from chemobrain are not alone. For example, one person said, “Don’t feel you have to cope with this on your own” and another said, “we are with you”.
A common theme that emerged from the online comments was the experience of cognitive function changing over time. For instance, many people described ongoing cognitive difficulties since the end of their treatments and in some cases declining or getting worse over time. By contrast, others described improvements in cognitive difficulties since their treatments ended, saying they are “doing better with time”. Others described cognitive symptoms as getting worse throughout individual days, with better functioning in the morning and dysfunction in the evenings or when they were tired.
Finally, many of the online comments centered around the theme of functioning in their everyday lives—from social and interpersonal interactions to occupational performance and in many cases debilitation, or lack of function. One person said, “I can sit and listen to someone talk and then it’s like I feel thick, like I just don’t understand what’s being said.” Others talked about slow returns to work, workload reduction, and lack of ability to do the work they did prior to their cancer. Several people described losing their jobs due to their cognitive problems and inability to function at previous levels. Some talked about an inability to do the things they wanted to in their lives, or a loss of the person they were prior to their treatments. One person said, “I wish I could be my old self.”