Chemo Brain and our Community: A Summary of 450 Passionate Survey Responses

If you have never heard of chemo brain but started experiencing its symptoms, it can be very distressing. People often say they feel like they are going mad, and friends and family find it difficult speaking and interacting with them - because they too are unaware of what chemo brain is. These stories became evident a month ago when we wrote an article on the results of a study of women with breast cancer, who had poorer cognitive abilities than women of the same age who had not had chemo. The post was so well received by our community that we wanted to gain a bit more insight into your experiences with chemo brain, and to see if there were any ways we could help ease this side effect of chemo. To do this, we sent out a survey via our email and Facebook page: we were overwhelmed to receive 450 passionate responses.

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:

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.

Results:

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:

  1. Mentally alert
  2. Excellent memory recall
  3. Quick-learner
  4. Attentive
  5. On-the-ball

In contrast, the five top responses to describe cognition after treatment (in order) were:

  1. Forgetful
  2. Fatigued
  3. Easily Distracted
  4. Foggy
  5. 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?

 

Word Cloud.png

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
  • Routine
  • Having an extra person present to help listen and understand information
  • Exercise (at the gym and outside getting some fresh air)
  • Working
  • Alarms as reminders
  • Taking time to complete tasks
  • Maintain the same routine as before treatment
  • Meditation
  • Yoga
  • 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 elizabeth@livebetterwith.com

Comments

  1. Valerie Griffin on

    I have peritoneal cancer have had surgery and chemotherapy I wasn't told about chemo head so thank you for this article I wondered what was happening to me glad to find I am still normal and that it will get better my chemo finished first week in September.

  2. Maureen Muldoon on

    I had it too and asked the nurses at the hospital where I was having chemo about it.She said there was such a thing.No one had told me about it.Before my treatment I did sudoku every day and was good with it and enjoyed doing it.During my treatment I never managed to do it.After treatment I managed to do it so it obviously affected me.

  3. Helen Crisp on

    I had heard of Chemo brain but I hadn't associated it so specifically with breast cancer. This is worrying. I was diagnosed with breast cancer back in November and have just, this last friday, had my second chemo treatment. At no time was Chemo Brain mentioned by my surgeon or my oncologist. However, that said, every so often I do lose my thread if I'm distracted momentarily and this is very irritating. I'm also relying far more on spell checkers on my ipad. Understanding how important it is to keep active, I am a keen walker and hope to complete the 10,000 steps a day for Cancer Research in March. Before my diagnosis we had planned to revamp my kitchen. Everyone said to put it on hold till after the treatment was done with but we think we know better (lol) and are pressing ahead with it. Ive found it good for me to research cookers and fridge freezers, units and work tops;something to really get my teeth into. I also run a book reading group and with the help of my friends in the group who are taking turns to host the group It is yet another activity I am focusing on. I also play lots of scrabble on line with many friends. (Its called Words with Friends) I think we have upwards of 15 games running at the moment. There is another good cognitive skill on line game called Wood Puzzle, where you have to fit various block shapes into a grid. The more you fit the higher your score. Lots of planning involved. So I can, at the moment, focus on these things, but I can't for the life of me work my brain round this simple knitting pattern for a coat for my friends new born baby. This is a pattern I have knitted several times but it is really causing me problems and this is so frustrating. Thank you for allowing me to leave this comment.

  4. Toni on

    Omg, I've just read your post about chemo brain, I had breast cancer 5 years ago, I had chemo brain, I used to just laugh it off, saying it's the drugs, but it had such a devastating effect on me, I used to be able to remember things, that stopped, I had no concentration what so ever, I couldn't even read a book, very distressing.
    But, the worst thing is, I still can't remember things, concentration is rubbish, and some days I cannot seem to do the simplest of tasks without getting flustered, I don't know if it's still the effect of chemo brain or the menopause. Either way it's an awful feeling, I really do feel for people going through it.

  5. Dawn Cullen on

    I had stomach cancer and had 2 cycles of chemotherapy before have a total gastrictomy in July 2016.Ive struggled with memory loss, feeling like I'm walking round in a fog and can't remember names and place name also not being able to sleep or concentrate i truly I was thought I was going mad, but after reading about chemo brain on this site and a little investigation I feel a relief to it has a name and I'm not alone in this . Thankyou ...

  6. Graham on

    A great article - thank you for sharing the results. I have a family member who has certainly experienced the symptoms you describe as Chemo Brain and having been present at the pre-chemo consultations, I can also say that Chemo Brain was not actually discussed. Only the main visible and tangible symptoms of nausea, hair loss and fatigue were really discussed.

  7. Lorraine stapylton on

    I have spoken to quite a few people in the last 3 years since i have had bowel cancer and a lot of them have mentioned chemo brain , which i definitely suffer from, especially the foggy feeling, forgetfulness and mind wandering off. I am only 54 so started to worry in the beginning i was suffering from something else. I also sometimes say things in tbe wrong order or it just comes out strange and my husband laughs at me and says "what" but at the end of the day not so funny, so ii think it should be looked into more and noted as a side effect.

  8. Anna Ferry-Damen on

    Thank you for this article. We were aware of this chemo side affect because it's mentioned in the MacMillan brochure about cancer treatment side affects. My husbands chemo nurse didn't do the test though. There should be more awareness and consideration because the whole treatment and everything that comes with it is confusing enough as it is. Especially when the cancer team make mistakes.
    It should be advised to always take someone with you to oncologist appointments. This to take in or write down the advice, change in plans, and so on.
    We watch quizzes on tv and try to do 1 crossword puzzle per day.

    Keep up the good work with publishing articles like this.

  9. Brenda on

    I went through chemo , surgery , then radiation for breast cancer last year. I have had chemo brain every since. Had a lumbar puncture last week because I think I've gone crazy. Haven't got results back yet. Just wondered if anybody gets over it?

  10. Holly Denman on

    Ha! It would make sense that many of us said no one spoke to us about chemo brain; we can't remember! Not only is there information overload at the beginning of treatment (I brought a friend to take notes) , there are so many decisions to make, too. Then we were given a notebook FULL of random information. I looked at it finally , two months post treatment. Sure enough, there was a little pamphlet on chemo brain. Even if I had.seen it, it would have been the least likely information to read. I was more worried about whether I was going to live, how much pain I would be in and what it was all going to cost. Mercifully, I don't remember any of that. Maybe there are good parts to chemo brain!

  11. Jeanine Sieber on

    I went back to work 2 months after stopping chemo to a very demanding job and a boss that was not supportive. After 8 weeks I crashed. I was so lost, unable to multitask, organize, remember names, use computer, list goes on. Fell into depression and panic attacks. Went out on med leave and never returned. My oncologist was not supportive of my emotional needs, and cognitive issues. Changed to new oncologist. Individual & group therapy helped, but cognitive speech therapy helped me the most. IT took me about a year and a half to feel close to my old self again.

Comments are closed.