Cognitive Changes
Cognitive changes are problems with thinking, memory and behavior. Some survivors may experience cognitive changes due to their cancers or cancer treatments. Knowing what is causing these problems can help you get the appropriate treatment.
Cognitive Changes: Detailed Information
This information is meant to be a general introduction to this tic. The purpose is to provide a starting point for you to become more informed about important matters that may be affecting your life as a survivor and to provide ideas about steps you can take to learn more. This information is not intended nor should it be interpreted as providing professional medical, legal and financial advice. You should consult a trained professional for more information. Please read the Suggestions and Additional Resources documents for questions to ask and for more resources
Some cancers and treatments can result in cognitive changes, such as in thinking, learning, processing or remembering information. Changes in these abilities can be upsetting because they may affect many aspects of life such as the ability to work or even to do everyday tasks that used to be routine.
Cancer and treatment may have different effects on different individuals. Having chemotherapy, radiation or surgical treatment does not mean that you will have cognitive changes. Yet, it is important to know whether you have an increased risk of cognitive changes.
Cognitive changes can happen suddenly (acute onset) or they can come up slowly over time (gradual onset). These types of changes may occur very differently in adults and children. This document will focus primarily on cognitive changes in adults with cancer. Talk with your health care team if you have questions related to children who experience cognitive changes. Keep in mind that there are also other reasons for cognitive changes that are not related to cancer.
Who might be at risk for cognitive changes?
Cancer survivors who have experienced the following might be more at risk for cognitive changes:
- Tumor located in the central nervous system (CNS) which includes the brain and spinal cord
- Treatments administered directly to the CNS
- Treatments administered when extremely ill
- Chemotherapy and radiation given to the brain at the same time
- Chemotherapy given into the spinal fluid after radiation
Cancer survivors who have not had any of the above procedures may also experience some cognitive changes. These changes may occur in survivors of all ages who have received different types of chemotherapy and radiation.
The frequency and severity of cognitive changes associated with chemotherapy can vary with the dose and type of medicine used. Changes are sometimes related to higher dose treatments of chemotherapy and the use of immunotherapy treatment to boost the immune system.
Those who have cancer involving the brain may also experience cognitive changes as a result of the tumor or the treatment of the tumor. The frequency and severity of the changes associated with radiation and surgery to remove a brain tumor depends on the amount of damage caused to surrounding healthy tissue. While cognitive changes associated with brain surgery often occur immediately (acute onset), cognitive changes associated with radiation and chemotherapy can develop more gradually over time (gradual onset).
Learn what cognitive changes to watch for so you can discuss any signs or symptoms with your health care team. Some changes after cancer are very minor and are reversible, meaning the changes will go away. However, some cognitive changes may be more noticeable and may not be reversible.
What are some types and symptoms of cognitive changes?
- Mild cognitive changes such as "Chemo-brain"
Sometimes survivors experience changes in their ability to remember or concentrate after they have chemotherapy. This typically mild form of cognitive change is sometimes called "chemo-brain." Even these typically mild cognitive changes can disrupt daily living and the ability work.
Symptoms of chemo-brain may include:
- Difficulty concentrating and multi-tasking
- Difficulty remembering things that occurred recently
- Difficulty completing tasks
- Slowed thinking speed
- Inability to think clearly
- Neurocognitive effect of tumors
There are a number of reasons tumors can affect cognitive abilities. A tumor or cancer cells in the brain can injure healthy cells and can cause cognitive changes. Chemotherapy, radiation and surgery are treatments that are used to remove or destroy cancer cells. However, they can also damage some of the surrounding healthy cells either by direct administration or by impacting the brain indirectly. Depending on how much damage occurs, there could be noticeable problems such as with thinking, memory, speech, visual-spatial problems and behavior changes.
- Acute onset cognitive changes (such as delirium)
Acute onset cognitive changes are those that occur suddenly. Some acute changes, such as delirium, come and go with no real pattern. This can happen during treatment with certain medications and chemotherapy agents, and may be reversible.
Symptoms of delirium may include:
- Fluctuating alertness and orientation
- Difficulty concentrating
- Reduced level of consciousness or the person seems “out of it”
- Person does not understand what is going on around him or her
- Unusual sleep patterns, such as awake at night and asleep during the day
- Agitation
- Confusion
- Memory loss
- Loud, aggressive behavior
- Hallucinations or seeing things that are not really there
- Disorientation or the person doesn’t know where s/he is
- Quiet, inactive behavior, including sedation or confusion
- Gradual onset cognitive changes (dementia)
Dementia is a term used in this document to describe cognitive changes due to medical conditions other than Alzheimer's disease. Gradual onset cognitive changes come about slowly over time and may be long lasting. Symptoms of dementia might not appear until active treatment for cancer is finished
Symptoms of dementia may include:
- Poor memory
- Difficulty with abstract thinking and/or multi-tasking
- Poor judgment (makes unsafe decisions)
- Poor decision making
- Changes in personality (may become moody or upset without a noticeable cause)
- Difficulty with problem solving and following directions
- Disorientation (not knowing where s/he is)
- Changes in cognition and behavior negatively affect professional or social life and degree of independence
What are other possible causes of cognitive changes in cancer survivors?
Chemotherapy may cause fatigue and anemia, which may also lead to cognitive problems, particularly with the ability to pay attention. In addition, a survivor can experience other conditions that cause cognitive changes that may or may not be related to cancer or treatment. Some of these conditions are reversible—some are not.
Other conditions that can cause cognitive changes may include:
- Anxiety
- Depression
- Electrolyte derangements
- Hypoxemia (low oxygen levels)
- Other diseases of the brain such as Alzheimer's disease or Parkinson's disease
- Thyroid problems
- Severe nutrition problems
Discuss all of the possible causes of cognitive problems with your health care team. This will help you receive the correct diagnosis and treatment.
When do cognitive changes occur?
Cognitive changes can occur at any point during your experience with cancer. Sometimes they are the first sign of a brain tumor. These changes may also happen after completing cancer treatment or after taking certain medications.
- Chemo brain can occur during or after chemotherapy treatment.
- Delirium may occur suddenly during treatment. Delirium usually happens after an identified cause, such as chemotherapy, and it is often reversible.
- Dementia due to cancer treatment comes on gradually over time and usually after treatment is completed. It may be harder to identify than delirium, and it may not have one identifiable cause. Dementia can develop as early as three months after radiotherapy to the brain. It can also occur 48 months or longer after completion of radiation therapy.
- Symptoms of dementia (such as memory loss) can also occur after surgery to remove a brain tumor.
What can be done to better manage cognitive changes?
Whether cognitive changes will improve or be permanent depends on their cause. Acute cognitive changes (delirium) that occur because of certain medicines often improve when you stop taking the medicine. Chronic changes (dementia) are often not reversible. However, some medications may enhance cognitive function, or there may be some improvement if the cause of the problems can be corrected.
If you notice changes in your thinking, memory or behavior, keep a record of the problems that you experience. Ask your family or friends to also watch for changes. Talk to your health care team about these symptoms as soon as possible. Request a neuropsychological evaluation with a neuropsychologist to help diagnose the nature, severity and possible causes of your cognitive changes. A neuropsychologist may suggest interventions to improve your functioning. Treating the underlying condition often lessens or eliminates the cognitive problems.
The following suggestions can help you manage cognitive changes:
- Take prescribed medication as directed.
Keep a journal of medications you are taking noting any side effects of the medications. Always talk to your health care team before you stop taking any medication. Check with your health care team before using any over the counter or prescription medications, or natural products to treat your symptoms.
Cognitive changes and problems with memory may make it hard to remember to take prescribed medication. If this is true, try different methods to help, such as:
- Writing down the time and date when you take the medication
- Taking the medication at the same time every day
- Using a medication reminder or pill dispenser
- Asking someone to help you keep track, if necessary
- Avoid dangerous activities if you are alone.
If you are having severe problems with concentration and memory, you may find yourself distracted. This could be dangerous during certain activities. Examples of activities you may want to avoid when alone include:
- Cooking
- Using tools that could cause injury
- Driving
- Traveling to unfamiliar places
- Ask your family to watch for safety issues.
If you have trouble with memory or concentration, you may want to sit down with your family and share your concerns. It may put your mind at rest to discuss ways they can help you go about your daily activities.
Examples of ways your family can help include:
- Creating a checklist to keep by the door for you to review to make certain that certain things have been done such as turning off kitchen appliances
- Driving you to appointments
- Helping you with specific challenging tasks
- Setting up a system to take medications properly
- Get plenty of rest and sleep.
Rest may not get rid of the problem, but enough rest may help make it better. If you have problems sleeping at night, consider trying the following:
- Limiting naps or length of naps during the day
- Developing an exercise plan with your health care team
- Using a bedtime ritual, such as:
- Meditating;
- Using aromatherapy;
- Reading or other relaxing activities to prepare for sleep
This document was by produced by LIVESTRONG in collaboration with:
Terri S. Armstrong, PhD, ANP-BC, FAANP, Associate Professor and John S. Dunn Distinguished Professor in Oncology Nursing,
UTHSC-SON,
Advanced Practice Nurse, Department of Neuro-Oncology M.D. Anderson Cancer Center
With contributions by
Jeffrey S. Wefel, PhD, ABPP
Chief Ad Interim, Section of Neuropsychology, Department of Neuro-Oncology, Division of Cancer Medicine, University of Texas MD Anderson Cancer Center, Houston, TX
Assistant Professor, Department of Neuro-Oncology, University of Texas MD Anderson Cancer Center, Houston, TX
Works Cited
Correa, D.D. (2010). Neurocognitive function in brain tumors. Curr Neurol Neurosci Rep (10)3; 232-239.
Calabrese, P., & Schlegel, U. (2009). Neurotoxicity of treatment. Resent Results in Cancer Research, 171: 165-174.
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Cognitive Changes: Suggestions
The suggestions that follow are based on the information presented in the Detailed Information document. They are meant to help you take what you learn and apply the information to your own needs. This information is not intended nor should it be interpreted as providing professional medical, legal and financial advice. You should consult a trained professional for more information. Please read the Additional Resources document for links to more resources.
- Use a health journal to communicate symptoms and side effects of medicine with your health care team:
- Record any cognitive changes that you notice. Keeping a health journal will help you to remember examples when you had difficulty concentrating or remembering simple things. These examples can be valuable for communicating with your health care team.
- Write down everything you want to ask your health care team between appointments.
- Keep track of your medications and bring this information to the appointment, along with all of your medication bottles. This helps the health care team be informed about all of the medications you are taking, including vitamins and over-the-counter medications.
- Take notes during your health care appointments, and write down your next appointment date and time.
- Things you can do to help you keep track of important information:
- Keep all of your important documents together in a notebook or binder that allows you to bring them with you to your appointments. Store pamphlets, medication side effect inserts and important phone numbers in your binder so that everything is in one place.
- Provide copies of relevant documents (such as test results) to the health care team. You can also fax or mail these to the health care provider before the appointment. Allowing the health care team to read your documents may be an easier way for some people to communicate.
- Contact your health care team to let them know of your concerns. This will alert your team about the changes you are experiencing and help make sure that you talk about them at your next appointment.
- Take the medication your health care team prescribes as directed to help cognitive changes:
Keep a journal of medications you are taking noting any side effects of the medications. Always talk to your health care team before you stop taking any medication. Check with your health care team before using any over the counter or prescription medications, or natural products to treat your symptoms.
- Avoid dangerous activities if you are alone:If you are having severe problems with concentration and memory, you may find yourself distracted. This could be dangerous during certain activities. Examples of activities you may want to avoid when alone include:
- Cooking
- Using tools that could cause injury
- Driving
- Traveling to unfamiliar places
- Ask your family to watch for safety issues:
If you have trouble with memory or concentration, you may want to sit down with your family and share your concerns. It may put your mind at rest to discuss ways they can help you go about your daily activities.
- Talk with your family and an attorney about legal documents you may need:
- If you are beginning to experience cognitive problems, it is important to make sure your medical and financial wishes are respected. Talk to your family about your wishes. Also, talk to an attorney about the legal documents that you will need to do this.
- Organize important information for your family, including medical wishes, finances and estate planning.
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Cognitive Changes: Additional Resources
The previous sections of this document provide detailed information, suggestions, and questions to ask related to this topic. This section offers a listing of additional resources that are known to provide support and quality services that may be helpful to survivors during the cancer journey.
LIVESTRONG Cancer Navigation Center
www.LIVESTRONG.org/GetHelp
| Email: |
Cancer.Navigation@LIVESTRONG.org |
| Phone: |
1.855.220.7777 (English and Spanish) |
| |
Navigators are available for calls Monday through Friday, 9 a.m. to 5 p.m. (Central Time). Voicemail is available after hours. |
The Navigation Center provides free, confidential one-on-one support to anyone affected by cancer. This is not a medical facility, but rather a center that provides the following support services:
- Emotional Support—assistance coping with a cancer diagnosis, help accessing support groups, as well as peer-to-peer connections
- Fertility Risks and Preservation Options—information on fertility risks and help accessing discounted rates for fertility preservation options
- Insurance, Employment and Financial Concerns—information on employment rights and benefits, financial assistance and debt management, including insurance and billing issues as well as medication co-pay assistance
In addition to professional cancer navigators on staff, LIVE
STRONG partners with specialty organizations such as Patient Advocate Foundation, Imerman Angels, Navigate Cancer Foundation and EmergingMed to provide support services.
CancerSymptoms.org
www.cancersymptoms.org
| Email: |
Send email through the website. |
| Phone: |
1.866.257.4667 |
This website is provided by the Oncology Nursing Society. CancerSymptoms.org is designed for patients and caregivers. It provides information to help you learn about and manage each of ten cancer treatment-related symptoms that patients undergoing treatment for a cancer diagnoses commonly experience.
Candlelighters Childhood Cancer Foundation
www.candlelighters.org
The Candlelighters Childhood Cancer Foundation offers information and publications on treatment and late effects for childhood cancer survivors. They describe the cognitive changes that children can experience and ways to manage them. Although this information is written about children, adults may find some of it useful in understanding cognitive changes and aftereffects. The Candlelighters Foundation also provides free books about cancer to children and their families who are affected by cancer
National Coalition for Cancer Survivorship (NCCS)
www.canceradvocacy.org
| Email: |
info@canceradvocacy.org |
| Phone: |
1.301.650.9127 |
| |
An information specialist is available Monday through Friday, 8:30 a.m. to 5:30 p.m. (Eastern Time). |
Founded by and for cancer survivors, the National Coalition for Cancer Survivorship (NCCS) advocates for quality cancer care for all people touched by cancer and provides tools and resources that empower people to advocate for themselves. Patients empowered with information and tools can receive optimal care by making their needs known to their doctors and care teams. Provided at no cost to the survivor, NCCS offers publications and resources such as the award-winning Cancer Survival Toolbox®, a self-learning audio program created by leading cancer organizations to help people develop essentials skills to meet the challenges of their illness.
NCCS strongly believes in evidence-based advocacy that reflects the needs of all cancer survivors to effect policy change at the national level. By advocating for patient-centered, coordinated care through treatment planning and care planning, NCCS is ensuring that the needs of cancer survivors remain at the center of healthcare policy.
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