People with a tumor in their brain often have unique physical, practical, and emotional needs during and after their medical treatment. In addition to physical changes, patients can experience changes in mood, personality, and thinking. As a result, caregiving at home can be challenging. Caregiving often includes a variety of responsibilities that may feel overwhelming. Planning for your role as a caregiver will help you take good care of your loved one and support your own health and wellbeing.
What is a brain tumor? What is metastatic brain cancer?
A primary brain tumor is a tumor that starts in the brain. A secondary brain tumor is a cancerous tumor that started elsewhere in the body and then spreads to the brain. When cancer spreads to another part of the body from where it began, doctors call it metastatic cancer. An area of cancer spread is called a "metastasis."
Nearly any type of cancer can spread to the brain, but certain cancers are more likely to spread to the brain. These include breast cancer, kidney cancer, lung cancer, and melanoma.
What are the symptoms of a brain tumor or brain metastasis?
The symptoms of a tumor in the brain vary from person to person. They depend on the tumor’s size, how fast it is growing, and where in the brain the tumor forms.
Possible symptoms that may occur from a tumor in the brain are:
Physical symptoms. Physical problems from a tumor in the brain include:
Cognitive symptoms. A tumor in the brain can change how a person's brain processes information. Cognitive problems can include:
Emotional symptoms. Brain tumors and cancer that has spread to the brain can also cause emotional changes. These include:
It is important for you to monitor these and other symptoms. The health care team will help you learn what to watch for and track these symptoms. And, be sure to talk with the team regularly about what the patient is experiencing, so they can help manage and relieve symptoms and side effects.
How can symptoms of a tumor in the brain be treated?
Relieving a person’s symptoms and treatment side effects is an important part of your loved one's medical care. This type of care is called palliative or supportive care. This type of care can continue even when active treatment to cure or slow down the cancer stops. Be sure to talk with your loved one’s health care team about new symptoms or changes to existing symptoms.
There are many options to relieve different symptoms of a primary brain tumor or brain metastasis.
Medications, such as corticosteroids that lower swelling in the brain, anti-seizure drugs, and pain medicine
Assistive devices, such as wheelchairs, canes, and walkers
Emotional support, such as counseling
Rehabilitation, such as problem-solving therapy, speech and language therapy, and physical therapy
Eating nutritious food
Complementary therapies, such as breathing exercises, massage, meditation, and acupuncture
Also, many people with a brain metastasis will have radiation therapy. There are two types of radiation therapy that are used for brain metastases:
Whole brain radiation therapy (WBRT). This type of radiation therapy targets the entire brain. Common side effects include moderate to severe fatigue, an increase in short-term memory loss, and hair loss.
Stereotactic radiosurgery. This type of radiation therapy targets only the part of the brain that has the tumor. It may be completed in 1 session. Because it does not affect the whole brain, there may be fewer side effects. Common side effects include fatigue, swelling at the treatment site, and nausea and vomiting.
Learn more about the side effects of radiation therapy.
Managing caregiver responsibilities
Learn as much as you can about your loved one’s diagnosis, treatment options, and chance of recovery. It is also important to ask the health care team about the medical, financial, and coping resources available to you and your loved one. As the disease and its treatment changes, so will your role. Here are some tips that may help:
Get to know your loved one’s health care team. Request a meeting with the team. Ask for clear, accurate information about the illness and treatment. Also, learn what each provider on the team does.
Ask family and friends for help. Figure out what tasks you need to do and organize a network of people to help you. Some people create an email list, text chain, or web page. You can also use one of the many websites available to make this process easier. Learn more about sharing responsibilities.
Learn how to provide day-to-day and medical care. Ask your loved one’s health care team for details on the best ways to provide daily living care. This may include bathing, dressing, and giving meals. Also ask how to provide medical care that may be needed, such as giving injections or wound care.
Consider professional caregivers. If possible, consider medical professionals and non-medical home care aids. Medical professionals can help with medical care that you are not comfortable doing. Home care aids can help with everyday caregiving tasks, such as grooming and cooking. Your loved one’s health insurance may pay for these services. Learn more about other caregiving options and how to find this type of caregiver.
Explore community resources. Many communities have available resources for caregivers. These include case management, legal aid, financial assistance, and counseling. Ask your loved one’s health care team for local referrals.
Stay organized. Keep track of important medical information in a way that makes sense to you and is easily available when you need it. You can use the free Cancer.Net mobile app or keep a paper record of this information that you bring with you to appointments. In your notes you should:
Monitor side effects
Plan doctor’s appointments
Planning ahead for people with a brain tumor or brain metastases
A brain tumor or brain metastases may affect a person’s ability to communicate or make decisions. Talk with your loved one now about their treatment goals and priorities. These could range from surviving as long as possible to maintaining a specific quality of life by avoiding certain side effects. Sometimes, that means stopping treatment. This may be hard for your family to discuss. If so, ask a social worker, counselor, or another member of your loved one’s health care team to lead the conversation.
Topics to discuss include:
An advance directive. An advance directive is a legal document. It states who a person wants to speak for them if they are too sick to make decisions. It also provides information about the types of care a person does and does not want. Give a copy of the document to your loved one’s health care team. Also, keep a copy at home.
Hospice care. People expected to live less than 6 months may want to consider a type of palliative care called hospice care. Hospice care aims to provide the best possible quality of life for people who are near the end of life. Your loved one should think ahead about where they would be most comfortable if the cancer progresses. This could be at home, in a hospice center, or another health care location. Nursing care and special equipment can make staying at home an option for many families.
Caring for yourself as a caregiver
It can be hard to balance your caregiving tasks with the responsibilities of your own life. Caregivers of people with brain tumor or brain metastases are likely to have emotional challenges. For example, you may experience anxiety or depression. It is also likely for a caregiver to have physical symptoms like exhaustion.
Personality changes common to brain tumors can be distressing. You may feel sad about watching the person you love act in a different way. You may also feel guilty about experiencing anger, frustration, or other emotions. It is important to remember that there is no right way to feel as a caregiver. It is okay to take care of yourself. In fact, your mental and physical health is important to the well-being of your loved one.
Ask an oncology social worker or your loved one’s health care team about ways to connect with other caregivers, arrange respite care, join online or local support groups, counseling, and other ways to manage stress.
Caregiving during the final days
As a person nears the end of their life, it is difficult to know what to expect. Knowing how to provide care in the final days can help. When you or the patient's doctor or nurse feel that time is approaching, talk with your loved one’s health care team about how to:
Recognize the signs of approaching death
Get urgent help from medical staff when needed
Handle practical matters after death
Your loved one’s health care team can also provide information on coping with grief and loss. This information can help you prepare for the loss of your loved one. It can also help you cope with changes you may experience when your caregiving journey ends.
Questions to ask the health care team
Consider asking your loved one's health care team the following questions.
Where is the tumor located in the brain? What is the stage of the disease?
What symptoms, side effects, and changes are possible due to this tumor?
Who can I talk with when side effects begin or worsen? How soon?
What can be done to manage or relieve each side effect?
Are there side effects that could require emergency medical care?
Is it time to talk with my loved one about a plan for their future care, such as creating an advanced directive? Who can help me with that discussion?
Who can I talk with if I need emotional support or practical help in my role as a caregiver? What resources are available to me?