Andy is forgetful. Marianne laughs at things that are not funny. John wanders from his front yard and gets lost in the neighborhood heís lived in for 20 years.
Patients with brain tumors can experience many changes in their usual ways of thinking and behaving. There can be subtle changes ó they may just seem "different" somehow. There can also be dramatic changes ó outbursts of anger, extreme personality changes, inability to remember important events, or bizarre speech patterns.
There is often more than one reason for the changes in behavior and thinking that patients with brain tumors experience. Exploring the causes of the changes and options for dealing with them is very important.
Did you know that the location, size and type of tumor, treatment methods and different medications can all contribute to the way a patient might be able to think, talk, act, and feel when they are being treated for a brain tumor? Letís briefly look at how and why this happens.
Location of tumor
Different areas of the brain are "control centers" for many important functions. For example, most people have their speech center in the left side of the brain. A brain tumor in this area can mean a person has difficulty saying the correct words, even though he or she is fully capable of understanding what is being said. If the tumor is in the frontal lobe (behind the forehead), patients may feel "disconnected" and lose some of their normal inhibitions. For example a person who previously was very polite may become rude, have anti-social behavior, or even start cursing. If you donít know where your brain tumor is located, or how that area of the brain normally functions, the next time youíre in clinic ask your doctor or nurse to explain this.
Size and type of tumor
If a tumor grows very quickly, such as with glioblastomas, healthy brain tissue can be more easily destroyed from pressure and swelling associated with the tumor. Patients with these tumors are more at risk for personality and behavioral changes. Slow-growing tumors, such as pilocytic astrocytomas, may not cause as much impairment because their slow growth enables the brain to compensate for the tumor.
Methods of treatment
Radiation therapy can produce acute (sudden) changes, usually as a result of the brain swelling from the radiation, much like a sunburn. The patient might experience headaches, irritability, and vomiting. Later, even weeks after radiation therapy has been completed, patients might experience fatigue, loss of energy, and sleepiness. These symptoms can contribute to a patient feeling and acting differently. Steroids can often be used to offset these symptoms.
Chemotherapy seems to have less direct effect on personality, ability to think, or ability to perform. However, the side effects of chemotherapy, such as nausea and vomiting, hair loss, or lowered blood counts, can cause changes in oneís energy level, ability to socialize, self-confidence and outlook on life.
Many of the symptoms that patients treated with monoclonal antibodies experience are related more to the side effects of the therapy than the direct effect on the brain. Side effects are similar to chemotherapy with fatigue and loss of appetite being common.
Steroids, such as Dexamethasone (Decadron), can cause patients to feel "wired" or edgy, become manic or restless, develop anxiety or become depressed. If you experience these symptoms, please speak with your healthcare provider about the possibility of decreasing the dose or of using a hypnotic or anti-psychotic medication to help with the symptoms.
Anti-convulsants in doses too high or too low can cause unwanted side effects. This is why your doctor periodically checks your blood level of anti-convulsants. They also can react with some chemotherapies, such as procarbazine and BCNU, and cause difficulty with gait, slurring of speech, sleepiness, depression, confusion and visual problems, including double vision. Less common, but also possible, are agitation, aggression, insomnia, and psychosis.
Finally, the patientís own normal response to coping with a life-threatening illness can cause personality changes, such as excessive crying or laughing, depression, or rage. Sharing feelings with family and friends, counseling, support groups, and anti-depressant medications can all be helpful.
Here are some strategies that can help you better understand and cope with what you are experiencing.
Pay attention. Become a keen and accurate observer of symptoms such as personality changes.
Record your observations on a daily basis. Note the time, the circumstances, the duration of the behaviors. Is there anything that makes it better or worse? Track the patterns of the behavior. Does the behavior occur around a certain time of day or around the time a certain drug is given? Does it occur in connection with fatigue or over stimulation?
Report your observations to the clinical team at The Brain Tumor Center. Review of neurobehavioral changes is an important part of each regularly scheduled clinic visit. Sudden or dramatic behavioral changes should be reported immediately.
Recognize that the person with a brain tumor is not necessarily trying to be difficult. Their behaviors may not be purposeful; instead, they may be involuntary, like a reflex. Focus less on changing the behavior of the person with the brain tumor and more on finding ways to cope. Know that fatigue, minor illnesses, drug or alcohol use can make things worse.
Be patient. Remember, while most of the human body heals very quickly by replacing cells that have been injured, the brain is designed not to grow new replacement cells. Instead, the brain is designed to heal by re-routing bruised or injured cells and forming new or different kinds of circuitry ó a process that can take about a year to complete.
Get help from a neuro-psychologist, a specialist who works with physicians to understand the organic effects of brain tumors on mental abilities. A neuropsychologist can conduct a series of tests to assess the patientís emotional state, thinking abilities, and behaviors. Based on the assessment, the neuropsychologist can suggest therapies, medications, or strategies to help the person and family members adapt to or compensate for certain losses.
Maintain a routine. Doing the same things, the same way, at the same time each day helps lower anxiety and maintain balance.
Join a support group. Sharing experiences and ideas with others who have truly "been there" can bring extraordinary healing for both patients and families.
Never give up hope!
Back to top