Helping Patients and Families Cope After Brain Cancer Surgery

NEW YORK--Personality and brain function can change after brain surgery, yet patients and their families may not know what to expect or what to do about it, said Stanford University neuropsychologist Harriet Katz Zeiner, PhD, during a Cancer Care teleconference.

"There is an incredible silence about what happens after brain tumor surgery. The worst thing that can happen is that the family sees that something is not right and wonders if the patient is losing his or her mind," said Dr. Zeiner, assistant clinical professor in physical medicine and rehabilitation at Stanford and a clinical neuropsychologist in inpatient rehabilitation at Palo Alto Veterans Health Care System.

Dr. Zeiner said that it can take 18 to 24 months for the brain to heal after brain tumor surgery. "It can take that long to clear up damaged areas and to re-organize how information is handled," she said, but unlike Alzheimer’s disease or other dementias, the worst brain effects of surgery often improve over time.

The primary results of brain tissue damage include attention deficits such as difficulty staying awake, focusing, or shifting focus; spatial ability deficits, including the inability to tell where one is in space; a slower rate of thinking; and decreased ability to learn and recall. It is unlikely that any individual patient will have all of these problems, she said.

The family of a person with attention deficits may think the person has become less intelligent. "There is a tendency for the family to speak to them slowly," Dr. Zeiner said. "But if you speak slowly, the person is going to recognize the change and have an emotional reaction."

She suggests that family members pause occasionally when talking to the patient. "It’s like taking a handful of commas and throwing them into speech, so that the listener can catch up." People interacting with someone recovering from brain tumor surgery should also be aware that the person’s ability to learn and remember will change from day to day, and that lapses in attention are not caused by some act of obstinacy.

Tips for Survivors of Brain Cancer (and Their Families)

Know your strengths and weaknesses by getting a neuropyschologic examination--after treatment, 6 months later, and a year after that.

If you cannot retrain memory, learn to use a notebook or organizer. It may take several months of working with someone on the notebook and having them remind you to use it.

If you have memory problems, ask people to remind you of the topic at different points during a conversation.

Know who to go to in your family as a resource to help you solve problems.

Family members should become acquainted with the possible catastrophic reactions to information overload (see text) and simplify the situation for their loved one should such a reaction occur.

As a result of defective spatial ability, brain tumor survivors may not be able to read emotions. They may not be able to put together the complex interactions of the human features that convey feeling. "In some cases, they will only know what another person is feeling if the other person tells them," Dr. Zeiner said.

Some people after brain surgery may not be aware of their own emotions. "They may be unable to monitor themselves and the environment at the same time," she said. "It may seem as if they are not doing things efficiently or have poor judgment, but that is because of the loss of an observing ego."

Brain tumor patients may react to information overload, exhibiting what is known as the "catastrophic reaction." There are four types, Dr. Zeiner said. An individual patient will show only one of them, and it will always be the same one.

Crying. Some individuals with brain injury will cry when they have to process too much information. But this reaction should not be confused with depression. "If you simplify the environment, the reaction quickly disappears. It’s very important to have a neuropsychologist distinguish between the crying reaction and depression," Dr. Zeiner said.

Withdrawing. The individual may leave the room or shut down and become very passive in response to information overload.

Laughing incontrollably is a third type of catastrophic reaction.

Expressing rage. The fourth and worst type of catastrophic reaction in terms of how it will affect the patient is rage, Dr. Zeiner said. "It is the worst because people around a person expressing rage will likely just go away. That means the situation simplifies, so it tends to reinforce anger as a way of simplifying a too complex situation," she said. "The patient who gives a catastrophic response of anger whenever there is overload is going to end up socially isolated. The family is going to turn on this person."

Keeping to a Routine

Almost all the effects of neurologic impairment can be helped by routine. Doing things at the same time makes them similar and therefore more simple, she said.

Getting enough sleep is important because being tired makes brain surgery effects worse. Going to sleep and rising at a set time every day can compensate for the fact that the brain may have lost the ability to regulate the day/night cycle.

Family members should not smother survivors with too much help but just give them the amount they need for the problem they are having, Dr. Zeiner advised. That way, their feelings of independence and competence will not be compromised.