Brain tumor survivorship involves much more than the label “survivor.” Survivorship is an ever-changing process, an experience of living with, through, and beyond a brain tumor diagnosis. Below is a list of frequently asked questions about survivorship. For more resources, you can also visit our Link Library.
- What happens after treatment is over?
- Can rehabilitation help brain tumor patients?
- How can I manage symptoms of fatigue?
- How do tumors affect the mind, emotions, and personality?
- What is a neuropsychologist?
- How can neuropsychologists help brain tumor patients?
- How can my family, my loved ones, and I cope with my brain tumor?
- Where can I get financial help for my family and myself?
- What happens after treatment is over?
After treatment is over, most patients are monitored for tumor recurrence on a regular basis with MRI or CT scans. Scans are typically done on a three-month, six-month, or yearly basis, depending on the tumor type.
- Can rehabilitation help brain tumor patients?
Yes. Patients with physical symptoms such as hemiparesis (numbness, weakness, or paralysis on one side of the body), difficulty with balance, visual disorders, or bowel and bladder dysfunction may benefit from one of several forms of treatment available at rehabilitation centers. Physical and occupational therapists are experts in rehabilitation. Occupational therapists teach patients how to manage their side effects so that they can go about their lives and perform daily activities. Physical therapists help patients improve their walking, balance, and strength. Every person with a brain tumor deserves to function optimally, and so patients need to be evaluated for the appropriate rehabilitation and treatment.
- How can I manage symptoms of fatigue?
Fatigue can vary from a feeling of tiredness to total exhaustion. It can limit a person to accomplishing no more than one activity per day. Fatigue is not relieved by a good night’s sleep. It can last for a short period of time or for many years. It can be the initial symptom of the brain tumor and is a common side effect of surgery, radiation therapy, and chemotherapy. Fatigue is considered one of the most debilitating symptoms and side effects of a brain tumor because it limits a person’s degree of physical activity.
The most common way to manage fatigue is to understand how and when fatigue occurs and to plan daily activities according to energy levels. Most people experience high energy at certain times of the day. By becoming aware of personal energy level patterns, patients can perform their daily activities at these times. They can also learn to conserve energy and develop ways to efficiently use their limited amount of energy. Organizing their home and time, using devices such as grab rails and extension handles to assist with basic tasks, asking for assistance from others, and resting when necessary are some ways to manage fatigue.
Medical treatment for fatigue has shown varying results, depending on the cause. A low red blood cell count (anemia) is one cause of fatigue. For this, a patient may be put on medication to help produce more red blood cells. When a patient experiences severe fatigue, the doctor may prescribe a drug to stimulate alertness. Studies using methyphenidate or modifinal show varying results, but may be worth considering.
For more information about managing symptoms of fatigue, see the fact sheet entitled Brain Tumors and Fatigue. - How do tumors affect the mind, emotions, and personality?
A brain tumor and/or its treatment can cause changes to a person’s cognitive (thinking) abilities, behavior, and emotions. The extent of changes can vary considerably from person to person and may affect a patient’s ability to work or go about his/her daily life.
Some causes of behavioral and personality changes include tumor size, type, and location; side effects of surgery, radiation therapy, and chemotherapy; side effects of medications; and the patient’s psychological reaction to the diagnosis of a life-threatening illness.
Cognitive changes can include difficulty speaking, writing, and/or reading; being easily distracted, confused, and disoriented; difficulty doing more than one task at a time; short-term memory loss; slowed thinking; trouble with problem solving; and poor judgment. A combination of medication, modifications in behavior, and simple lifestyle adjustments may help the person dealing with these issues and symptoms. For example, a person who has difficulty with multitasking can avoid confusion and frustration by limiting themselves to doing one thing at a time.
Emotional and personality changes may include depression, irritability, anxiety, mood swings, obsessive-compulsive tendencies, disinhibition, and withdrawal. Troublesome symptoms such as lack of sleep, forgetfulness, and chronic pain can play a role in making things worse by causing irritability and frustration. Sharing feelings with family and friends is essential for any person dealing with a life-threatening illness. Psychological counseling, spiritual help, and support groups can help tremendously. An antidepressant or other medication may be prescribed.
In all cases, it is important to notify your medical team about behavioral changes. Chronic illness of a family member can cause emotional distress to the entire family. Talk with your treatment team, as there may be help and treatment available.
For more information about behavioral and personality changes, see the fact sheet entitled How Tumors Affect the Mind, Emotions, and Personality.
- What is a neuropsychologist?
A neuropsychologist is a licensed psychologist who has specialized training and experience studying how the brain functions. A neuropsychologist does testing and research to attempt to explain the relationship between brain activity and behavior and to understand how functions within the brain influence thinking, learning, and emotions. He or she studies the impact that brain damage has on a person’s functioning and abilities. A neuropsychologist can help brain tumor patients and survivors evaluate changes resulting from their brain tumor or treatment and can help develop a plan for rehabilitation.
- How can neuropsychologists help brain tumor patients?
A neuropsychologist can help some brain tumor patients evaluate changes caused as a result of their tumor and develop a rehabilitation plan. Neuropsychological testing is the method used to identify changes in the cognitive functioning of a patient. A series of tests conducted by a licensed neuropsychologist can assess the patient’s emotional state, and mental and behavioral abilities. This evaluation helps identify the areas of the brain that have been affected by the tumor. Although neuropsychologists are often consulted after treatment, it may be preferable to have a neuropsychological evaluation before treatment. That way, a more accurate comparison can be made of changes that may occur following treatment.
After analyzing the results of the tests, the neuropsychologist can make recommendations for rehabilitation, therapy, or medications to help the patient regain as much function as possible. A neuropsychologist may offer training in compensation techniques for the mental and/or physical abilities that cannot be fully regained. Neuro-oncologists or neurologists can give a referral to a neuropsychologist. Referrals can also be found in rehabilitation settings.
- How can my family, my loved ones, and I cope with my brain tumor?
A family in which one member has a brain tumor is constantly challenged by changing circumstances, and yet must also strive to be caring and supportive throughout the entire process of diagnosis, treatment, and recovery.
Being aware of some of the different ways in which your illness may affect you and your loved ones can help in finding the best ways to cope with these changes. People may respond in various ways. Common reactions can include physical symptoms such as fatigue, nervousness, impaired sleep, or appetite; emotional reactions such as fear, shock, depression, anger, guilt, mood swings, or crying; cognitive symptoms such as difficulty concentrating or forgetfulness; and spiritual responses such as searching for meaning, or an increase or decrease in spirituality. These are all normal responses to stress. Recognizing these common issues can guide everyone struggling with the challenges brought about by a brain tumor diagnosis.
Brain tumor patients will often have a primary caregiver, the main person who assists and cares for the patient’s needs. Communication between family members may become more difficult with regard to addressing changes in roles and responsibilities. How a family copes with these changes is affected by the ability to communicate. Families may need to identify outside sources of support to assist with this process.
Identifying individual family members and friends who are committed to helping can provide needed support to the patient and help with difficult transitions. Including others can promote a sense of community and reduce the feeling of being alone for caregivers and patients. Creating new, flexible solutions to changing circumstances can serve as a way to help cope with the changing nature of the illness. Recognizing that the old way of doing things may no longer be useful can help families to come up with new and innovative ways of dealing with change.
It is difficult to summarize a single approach to coping, because every patient, family, and disease is different. But it’s important to recognize how stress is affecting you. If your response to stress feels extreme or persists over time, consider consulting your doctor or a counselor.
These are some of the resources available to help patients and their families cope:
National Brain Tumor Society Support Group Listings
CancerCare Counseling Line
800.813.4673 | www.cancercare.orgNational Family Caregivers Association
800.896.3650 | www.nfcacares.orgWell Spouse Foundation
800.838.0879 | www.wellspouse.orgWellness Community
310.453.2300 | www.thewellnesscommunity.org - Where can I get financial help for my family and myself?
Temporary and permanent benefit programs offer financial assistance for those who cannot return to work. A hospital social worker or local social services agency can provide more detailed information and possibly assist with the application process.
- Medicaid: This health insurance program for eligible people below a designated income level is jointly funded by federal and state governments. Each state has different eligibility requirements. For information about Medicaid coverage, visit www.cms.gov or call your local Department of Social Services.
- Medicare: This is a federal health insurance program for eligible individuals aged 65 or older, people with permanent kidney failure, and disabled people under the age of 65. Disabled applicants must have been receiving Social Security Disability Insurance (SSDI) benefits for 24 months to qualify. Call 800-MEDICARE (800.633.4227) or visit www.medicare.gov for more information.
- The Social Security Administration offers two programs for people with disabilities.
- Social Security Disability Insurance (SSDI): This program is not based on need. SSDI is based on money deducted from a worker’s paychecks. For more information about SSDI, call 800-772-1213 or visit www.ssa.gov/disability.
- Supplemental Security Income (SSI): This program is based on need. Past contributions to the Social Security system do not affect eligibility. For more information about SSI, call 800-772-1213 or visit www.ssa.gov.
- Veterans Health Administration: This program offers eligible veterans and their dependents medical treatment based on financial need. Call 877-222-VETS (877-222-8387) or visit www.va.gov.
