Freephone helpline: 0808 808 5555 [email protected] www.lymphomas.org.uk Cancer-related cognitive impairment ('chemo brain') This information is about cancer-related cognitive impairment, which is a condition that some people with cancer experience. It is sometimes called ‘chemo brain’. It will answer the most common questions people ask: What is cancer-related cognitive impairment? (page 1) Who gets it? (page 1) What causes it? (page 2) How might I be affected? (page 3) Is there any treatment? (page 3) Coping with cancer-related cognitive impairment (page 4) Getting help and support (page 4). What is cancer-related cognitive impairment? You might hear or read about ‘cancer-related cognitive disorder’, ‘mild cognitive impairment’ (the word ‘cognitive’ means ‘relating to thinking’) or ‘chemo brain’. These are all the same thing. They mean a change in your thinking processes, such as difficulty with concentrating or with remembering things. Who gets cancer-related cognitive impairment? It is not known exactly how many people with cancer are affected by cognitive impairment. Some research studies have shown that cognitive problems occur in around 1 in 6 people with cancer, but other research has suggested that more than three-quarters of people with cancer experience cognitive problems. 1 Cancer-related cognitive impairment/Lymphoma Association/2015 edition
Cancer-related cognitive impairment ('chemo brain')
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Cancer-related cognitive impairment ('chemo brain')[email protected]
www.lymphomas.org.uk
Cancer-related cognitive impairment ('chemo brain') This information is about cancer-related cognitive impairment, which is a condition that some people with cancer experience. It is sometimes called ‘chemo brain’. It will answer the most common questions people ask:
What is cancer-related cognitive impairment? (page 1) Who gets it? (page 1) What causes it? (page 2) How might I be affected? (page 3) Is there any treatment? (page 3) Coping with cancer-related cognitive impairment (page 4) Getting help and support (page 4).
What is cancer-related cognitive impairment?
You might hear or read about ‘cancer-related cognitive disorder’, ‘mild cognitive impairment’ (the word ‘cognitive’ means ‘relating to thinking’) or ‘chemo brain’. These are all the same thing. They mean a change in your thinking processes, such as difficulty with concentrating or with remembering things.
Who gets cancer-related cognitive impairment?
It is not known exactly how many people with cancer are affected by cognitive impairment. Some research studies have shown that cognitive problems occur in around 1 in 6 people with cancer, but other research has suggested that more than three-quarters of people with cancer experience cognitive problems.
1Cancer-related cognitive impairment/Lymphoma Association/2015 edition
Most research into cognitive impairment in people with cancer has been done in women with breast cancer, but it can affect both men and women. It can also affect children who have been treated for acute lymphoblastic leukaemia. It can affect people with any kind of cancer, including lymphoma.
‘Chemo brain’ is a misleading name for the condition because it is rarely caused by the effects of chemotherapy drugs on the brain – very few of these drugs reach the brain. It is thought to happen for a variety of reasons, including the cancer itself, the effects of the treatments on the body and the upheaval of going through such a stressful life event as having cancer.
What causes cancer-related cognitive impairment?
It is not known for certain why these symptoms happen and why they happen in some people but not in others.
Doctors and other researchers believe that several factors probably work together to cause the symptoms of cognitive impairment, including:
the cancer itself cancer treatments, such as chemotherapy, radiotherapy and antibody treatments (especially if you have more intensive treatments such as high-dose chemotherapy and a stem cell transplant) side effects of cancer treatments, such as
a low red blood cell count (anaemia) a low white blood cell count (neutropenia) infections
treatments given to help with the side effects of cancer treatments, such as anti-sickness medications, strong painkillers or treatments given to prevent rejection of a stem cell transplant hormone changes caused by cancer treatments, such as an early menopause.
Other possible causes are:
stress and anxiety depression sleep disruption and tiredness.
It is not clear whether these last three factors cause cancer-related cognitive impairment or whether it is the other way round and cognitive impairment causes them. However, if you are tired or depressed you will be more likely to have difficulties with thinking and concentrating.
Researchers are studying how cognitive impairment develops in people with cancer and why some people may be more vulnerable than others. Hopefully the results of these research studies will help doctors find out what types of treatment might work best.
The Cancer Research UK website (www.cancerresearchuk.org) has useful information about cancer-related cognitive impairment and current research into the condition.
2Cancer-related cognitive impairment/Lymphoma Association/2015 edition
How might I be affected?
The symptoms are often mild and usually improve with time, but they can be embarrasing and frustrating and can affect your quality of life. They can affect your mood and your self-confidence and might put you off socialising or returning to work.
You might find you have difficulties with:
your memory – forgetting dates, phone numbers or names that you would normally remember easily concentrating on everyday tasks or on your work – even on simple things like preparing a meal or getting ready to go out thought processes that you normally find easy – such as making shopping lists, doing puzzles or adding up numbers in your head multi-tasking – doing more than one thing at a time finding the right words for things following the thread of a conversation and analysing what it means making plans (day-to-day or longer term) learning new facts or skills – you might get confused more easily or take longer to learn things.
People often describe being in a ‘mental fog’ or even slightly detached from the world around them.
The symptoms can also come and go. They can get worse if you are busy, if you try to multi-task or if you are tired.
The symptoms might last for a few weeks, but some people find they go on for longer than this.
Is there any treatment for cancer-related cognitive impairment?
If you are finding symptoms difficult, don’t suffer in silence – tell your doctor or nurse. They will recognise your symptoms. They will check for and treat any medical conditions that could be causing your problems, such as anaemia or an infection, and will be able to suggest sources of support.
Your team might be able to refer you for specialist help – for psychological treatments such as cognitive behavioural therapy (CBT) for example. CBT is a talking therapy that helps with ordering your thought processes and suggests methods of coping that are tailored to your individual needs. This type of therapy can help ease both the emotional and the cognitive difficulties that a diagnosis of cancer and its treatment can bring.
3Cancer-related cognitive impairment/Lymphoma Association/2015 edition
Research is looking into using these ‘cognitive training’ methods and also drug treatments for cancer-related cognitive impairment, to try and find out what works best.
In July 2014 the BBC reported the results of the latest research by Dr Oana Lindner, featuring a teenager with Hodgkin lymphoma who experienced cognitive impairment after having treatment for the illness.
The BBC News Health article is available at http://www.bbc.co.uk/news/health-28163631
Coping with cancer-related cognitive impairment
Here are some practical tips people have told us they found helpful:
Keep life as simple as possible – don’t take on too much. Do one thing at a time – don’t try to multi-task. Plan your day so that you do difficult things when you feel at your best. Keep a diary or use a calendar – a paper one or an app on your phone. Use a notebook to jot down things like:
shopping and ‘to do’ lists hospital appointments, medications, new symptoms phone calls you need to make dates of social occasions, meetings or dates that bills are due to be paid people’s names (with a short description if that would help), phone numbers, birthdays, anniversaries.
Use Post-It® notes around the house to remind you about things you need to do. Put important things in one place every time you put them down (eg your phone, keys, glasses). Keep your mind active by doing puzzles, crosswords, Sudoku or quizzes. Reduce stress in your life if you can – relaxation techniques might help. Keep as physically healthy as possible – in particular, try to make sure you
have a good diet that includes plenty of fruit and vegetables exercise – try and get out every day, even for a short walk.
Getting help and support
Cancer-related cognitive impairment is invisible to other people. Tell your family and friends about how you are feeling. Having their support and understanding will help you to cope better.
If you are considering going back to work, talk to your employer about how you are feeling so that they are aware of any potential difficulties you might have when you are back. Your medical team might know of a local support group you could join where you can share your experiences and feelings with other people who are in a similar situation.
The Lymphoma Association helpline is also there to provide a listening ear. You can ring them free on 0808 808 5555, email them on [email protected] or contact them via Live Chat on our website. We also have forums on the website where you can share your experiences, a network of support groups and a buddy scheme.
4Cancer-related cognitive impairment/Lymphoma Association/2015 edition
Sources used
These are a few of the sources we used to prepare this information. The full list of sources is available on request. Please contact us by email ([email protected]) or by ringing 01296 619409 if you would like a copy.
Lindner OC, et al. A meta-analysis of cognitive impairment following adult cancer chemotherapy. Neuropsychology, 2014. 28: 726–740.
McDougall GJ, et al. Memory and cancer: a review of the literature. Archives of Psychiatric Nursing, 2014. 28: 180–186.
Hodgson KD, et al. A meta-analysis of the effects of chemotherapy on cognition in patients with cancer. Cancer Treatment Reviews, 2013: 297–304.
Fardell JE, et al. Chemotherapy and cognitive impairment: treatment options. Clinical Pharmacology and Therapeutics, 2011. 90: 366–376.
Vardy J et al. Cancer and cancer-therapy related cognitive dysfunction: an international perspective from the Venice cognitive workshop. Annals of Oncology, 2008. 19: 623–629.
Acknowledgements
With thanks to Dr Oana Lindner, Research Associate, School of Psychological Sciences, University of Manchester and to Jane Gibson, Lymphoma Clinical Nurse Specialist, Christie Hospital, Manchester for reviewing this information.
We would also like to thank the members of the reader panel who gave their time to review the information.
Content last revised: February 2015
Next planned review: 2017
LYMweb0110CRCogDis2015v1
Disclaimer
We make every effort to make sure that the information we provide is accurate but it should not be relied upon to reflect the current state of medical research, which is constantly changing. If you are concerned about your health, you should consult your doctor. The Lymphoma Association cannot accept liability for any loss or damage resulting from any inaccuracy in this information or third party information such as information on websites we link to.
The following user-generated information is excluded from the scope of our Information Standard certification: weblogs, chatroom, forums and personal experience pages. Neither The Information Standard scheme operator nor the scheme owner shall have any responsibility whatsoever for costs, losses or direct or indirect damages or costs arising from inaccuracy of information or omissions in the information published on the website on behalf of the Lymphoma Association.
5Cancer-related cognitive impairment/Lymphoma Association/2015 edition
www.lymphomas.org.uk
Cancer-related cognitive impairment ('chemo brain') This information is about cancer-related cognitive impairment, which is a condition that some people with cancer experience. It is sometimes called ‘chemo brain’. It will answer the most common questions people ask:
What is cancer-related cognitive impairment? (page 1) Who gets it? (page 1) What causes it? (page 2) How might I be affected? (page 3) Is there any treatment? (page 3) Coping with cancer-related cognitive impairment (page 4) Getting help and support (page 4).
What is cancer-related cognitive impairment?
You might hear or read about ‘cancer-related cognitive disorder’, ‘mild cognitive impairment’ (the word ‘cognitive’ means ‘relating to thinking’) or ‘chemo brain’. These are all the same thing. They mean a change in your thinking processes, such as difficulty with concentrating or with remembering things.
Who gets cancer-related cognitive impairment?
It is not known exactly how many people with cancer are affected by cognitive impairment. Some research studies have shown that cognitive problems occur in around 1 in 6 people with cancer, but other research has suggested that more than three-quarters of people with cancer experience cognitive problems.
1Cancer-related cognitive impairment/Lymphoma Association/2015 edition
Most research into cognitive impairment in people with cancer has been done in women with breast cancer, but it can affect both men and women. It can also affect children who have been treated for acute lymphoblastic leukaemia. It can affect people with any kind of cancer, including lymphoma.
‘Chemo brain’ is a misleading name for the condition because it is rarely caused by the effects of chemotherapy drugs on the brain – very few of these drugs reach the brain. It is thought to happen for a variety of reasons, including the cancer itself, the effects of the treatments on the body and the upheaval of going through such a stressful life event as having cancer.
What causes cancer-related cognitive impairment?
It is not known for certain why these symptoms happen and why they happen in some people but not in others.
Doctors and other researchers believe that several factors probably work together to cause the symptoms of cognitive impairment, including:
the cancer itself cancer treatments, such as chemotherapy, radiotherapy and antibody treatments (especially if you have more intensive treatments such as high-dose chemotherapy and a stem cell transplant) side effects of cancer treatments, such as
a low red blood cell count (anaemia) a low white blood cell count (neutropenia) infections
treatments given to help with the side effects of cancer treatments, such as anti-sickness medications, strong painkillers or treatments given to prevent rejection of a stem cell transplant hormone changes caused by cancer treatments, such as an early menopause.
Other possible causes are:
stress and anxiety depression sleep disruption and tiredness.
It is not clear whether these last three factors cause cancer-related cognitive impairment or whether it is the other way round and cognitive impairment causes them. However, if you are tired or depressed you will be more likely to have difficulties with thinking and concentrating.
Researchers are studying how cognitive impairment develops in people with cancer and why some people may be more vulnerable than others. Hopefully the results of these research studies will help doctors find out what types of treatment might work best.
The Cancer Research UK website (www.cancerresearchuk.org) has useful information about cancer-related cognitive impairment and current research into the condition.
2Cancer-related cognitive impairment/Lymphoma Association/2015 edition
How might I be affected?
The symptoms are often mild and usually improve with time, but they can be embarrasing and frustrating and can affect your quality of life. They can affect your mood and your self-confidence and might put you off socialising or returning to work.
You might find you have difficulties with:
your memory – forgetting dates, phone numbers or names that you would normally remember easily concentrating on everyday tasks or on your work – even on simple things like preparing a meal or getting ready to go out thought processes that you normally find easy – such as making shopping lists, doing puzzles or adding up numbers in your head multi-tasking – doing more than one thing at a time finding the right words for things following the thread of a conversation and analysing what it means making plans (day-to-day or longer term) learning new facts or skills – you might get confused more easily or take longer to learn things.
People often describe being in a ‘mental fog’ or even slightly detached from the world around them.
The symptoms can also come and go. They can get worse if you are busy, if you try to multi-task or if you are tired.
The symptoms might last for a few weeks, but some people find they go on for longer than this.
Is there any treatment for cancer-related cognitive impairment?
If you are finding symptoms difficult, don’t suffer in silence – tell your doctor or nurse. They will recognise your symptoms. They will check for and treat any medical conditions that could be causing your problems, such as anaemia or an infection, and will be able to suggest sources of support.
Your team might be able to refer you for specialist help – for psychological treatments such as cognitive behavioural therapy (CBT) for example. CBT is a talking therapy that helps with ordering your thought processes and suggests methods of coping that are tailored to your individual needs. This type of therapy can help ease both the emotional and the cognitive difficulties that a diagnosis of cancer and its treatment can bring.
3Cancer-related cognitive impairment/Lymphoma Association/2015 edition
Research is looking into using these ‘cognitive training’ methods and also drug treatments for cancer-related cognitive impairment, to try and find out what works best.
In July 2014 the BBC reported the results of the latest research by Dr Oana Lindner, featuring a teenager with Hodgkin lymphoma who experienced cognitive impairment after having treatment for the illness.
The BBC News Health article is available at http://www.bbc.co.uk/news/health-28163631
Coping with cancer-related cognitive impairment
Here are some practical tips people have told us they found helpful:
Keep life as simple as possible – don’t take on too much. Do one thing at a time – don’t try to multi-task. Plan your day so that you do difficult things when you feel at your best. Keep a diary or use a calendar – a paper one or an app on your phone. Use a notebook to jot down things like:
shopping and ‘to do’ lists hospital appointments, medications, new symptoms phone calls you need to make dates of social occasions, meetings or dates that bills are due to be paid people’s names (with a short description if that would help), phone numbers, birthdays, anniversaries.
Use Post-It® notes around the house to remind you about things you need to do. Put important things in one place every time you put them down (eg your phone, keys, glasses). Keep your mind active by doing puzzles, crosswords, Sudoku or quizzes. Reduce stress in your life if you can – relaxation techniques might help. Keep as physically healthy as possible – in particular, try to make sure you
have a good diet that includes plenty of fruit and vegetables exercise – try and get out every day, even for a short walk.
Getting help and support
Cancer-related cognitive impairment is invisible to other people. Tell your family and friends about how you are feeling. Having their support and understanding will help you to cope better.
If you are considering going back to work, talk to your employer about how you are feeling so that they are aware of any potential difficulties you might have when you are back. Your medical team might know of a local support group you could join where you can share your experiences and feelings with other people who are in a similar situation.
The Lymphoma Association helpline is also there to provide a listening ear. You can ring them free on 0808 808 5555, email them on [email protected] or contact them via Live Chat on our website. We also have forums on the website where you can share your experiences, a network of support groups and a buddy scheme.
4Cancer-related cognitive impairment/Lymphoma Association/2015 edition
Sources used
These are a few of the sources we used to prepare this information. The full list of sources is available on request. Please contact us by email ([email protected]) or by ringing 01296 619409 if you would like a copy.
Lindner OC, et al. A meta-analysis of cognitive impairment following adult cancer chemotherapy. Neuropsychology, 2014. 28: 726–740.
McDougall GJ, et al. Memory and cancer: a review of the literature. Archives of Psychiatric Nursing, 2014. 28: 180–186.
Hodgson KD, et al. A meta-analysis of the effects of chemotherapy on cognition in patients with cancer. Cancer Treatment Reviews, 2013: 297–304.
Fardell JE, et al. Chemotherapy and cognitive impairment: treatment options. Clinical Pharmacology and Therapeutics, 2011. 90: 366–376.
Vardy J et al. Cancer and cancer-therapy related cognitive dysfunction: an international perspective from the Venice cognitive workshop. Annals of Oncology, 2008. 19: 623–629.
Acknowledgements
With thanks to Dr Oana Lindner, Research Associate, School of Psychological Sciences, University of Manchester and to Jane Gibson, Lymphoma Clinical Nurse Specialist, Christie Hospital, Manchester for reviewing this information.
We would also like to thank the members of the reader panel who gave their time to review the information.
Content last revised: February 2015
Next planned review: 2017
LYMweb0110CRCogDis2015v1
Disclaimer
We make every effort to make sure that the information we provide is accurate but it should not be relied upon to reflect the current state of medical research, which is constantly changing. If you are concerned about your health, you should consult your doctor. The Lymphoma Association cannot accept liability for any loss or damage resulting from any inaccuracy in this information or third party information such as information on websites we link to.
The following user-generated information is excluded from the scope of our Information Standard certification: weblogs, chatroom, forums and personal experience pages. Neither The Information Standard scheme operator nor the scheme owner shall have any responsibility whatsoever for costs, losses or direct or indirect damages or costs arising from inaccuracy of information or omissions in the information published on the website on behalf of the Lymphoma Association.
5Cancer-related cognitive impairment/Lymphoma Association/2015 edition
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