What is chemo brain?
Chemo brain is a term used to describe cognitive changes in people who have undergone chemotherapy. People often describe their mental state as slower than usual and a feeling of “fogginess.” The medical term for chemo-brain is mild cognitive impairment, but due to the lack of research into chemo brain, it is not widely or openly discussed between patients and healthcare professionals. Lack of information and unexplained symptoms can be very distressing for people who are experiencing cognitive changes but have never heard of chemo-brain and how it can impact their day to day life.
What do the following results mean?
Surveys, like the one we did, can provide anecdotal evidence. This type of evidence can help you find new ways to manage your side effects, provide reassurance, and maybe give you the confidence to start a conversation with your treating doctor or nurse. The results of this survey do not replace a doctor's or nurse's advice or diagnosis. If you think you are experiencing symptoms of chemo brain, please speak to your treating doctor or nurse.
The survey was fourteen questions long and split into three categories “yourself,” “your mental alertness before and after treatment,” and “your knowledge about chemo-brain.” Although each question had specific responses, people were able to add in their answers if they could not find a response that applied to them.
Just under 450 people responded to the survey. The majority of respondents were women with a breast cancer diagnosis, however over twenty different cancer demographics were represented. These ranged from haematological cancers such as lymphoma (Hodgkin's and Non-Hodgkin's) and multiple myeloma to solid tumours, including oesophageal cancer, osteosarcoma, lung cancer and cancer of unknown primary. Nearly all respondents (97%) stated they had or were having chemotherapy and 70% of respondents reported that their cognitive ability had decreased since commencing treatment. The degree of variability ranged from mild to severe.
We then asked respondents to describe their cognition before and after treatment.
Before treatment (could be any treatment, not necessarily chemo), the majority of responses indicated that their cognitive ability was above satisfactory.
The top five responses (in order) were:
- Mentally alert
- Excellent memory recall
In contrast, the five top responses to describe cognition after treatment (in order) were:
- Easily Distracted
- Easily confused
*All answers were provided for both questions
Only 6% of respondents considered themselves forgetful before commencing treatment; after treatment, this number raised to nearly 80%. Similarly, before treatment nearly 66% of respondents considered themselves mentally alert, this figure dropped to 4.3% after treatment.
Knowledge about chemo brain
Almost all of respondents who had taken part in the survey had undergone or were currently having chemotherapy (97%). We asked how much they knew about chemo brain and whether their doctor or nurse had spoken to them about chemo-brain as a possible side effect.
A staggering 76% of respondents had not been told what chemo brain was before starting treatment. The same percentage of people also found that neither their doctor or nurse had discussed chemo brain before starting treatment.
A result that large cannot go unnoticed. It's hard to identify why chemo-brain is not spoken about between patients and healthcare professionals when other side effects such as hair loss, skin changes or nausea are. One possible reason is the lack of studies sufficiently identifying chemo brain as a side effect of treatment. Another reason could be because it's difficult to accurately pinpoint whether cognitive changes are related to treatment and are not a result of other factors such as age, hormones, medications, stress and fatigue.
How do you manage chemo brain?
Symptoms of chemo brain, we have seen, can range from person to person. How long one is affected by chemo brain also varies between individuals. It is thought that it can take up to a year after treatment for your cognition to go back to normal. However, some people find their mental ability goes back to normal sooner than this, and for others, it takes a bit more time. It does seem that there are ways to help manage mild cognitive changes. The most popular way to manage cognition changes was to write things down. Others found having a routine and bringing an extra person to listen also helped. Extra sleep, puzzles, brain training, work, and exercise were other ways people handle their chemo-brain.
Sadly 15% of respondents said they are still looking to find ways to manage their chemo brain. We hope that there is something on this list that can help. The following list is a summary of how the respondents manage(d) their chemo brain:
- Writing things down
- Brain Training (including apps such as Luminosity and PEAK)
- Puzzles (including jigsaw puzzles and sudoku)
- Colouring Books
- Extra Sleep
- Having an extra person present to help listen and understand information
- Exercise (at the gym and outside getting some fresh air)
- Alarms as reminders
- Taking time to complete tasks
- Maintain the same routine as before treatment
- Allowing time to get better
Being forgetful and fatigued can be stressful if you are unaware why it is occurring and are unsure what to do about it. With more people being diagnosed with cancer every year and experiencing side effects associated with treatment hopefully more research will be done regarding management of chemo brain.
Live Better With has several recommended products to help tackle chemo brain.
You can find the entire selection of products here: https://livebetterwith.com/products/collections/cancer/mind-and-brain/chemo-brain/
If you would like to share your experience of chemo brain or have any tips, suggestions or products to help manage chemo brain, we would love to hear from you. Email our Nursing Lead, Elizabeth, at firstname.lastname@example.org