Life After a Brain Tumor Diagnosis

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When a child finishes treatment for a brain tumor, the journey has only begun. It’s important for parents, caregivers, and survivors to plan for the months and years ahead.


Neurological Late Effects

Depending on where a child’s tumor was located and what kind of treatment the child received, they may experience late effects that impact their nerves or nervous system.

Types of Neurological Late Effects and What to Do

Speech and Language Problems

Trouble with communication or trouble finding words can frustrate and embarrass survivors. It can also get in the way of making and keeping friends.

Cognitive function (how the brain works) may be part of the problem if it’s hard for a survivor to remember a word they’re looking for, follow a conversation, or pay attention. Fatigue (a feeling of being tired) can also affect communication because it can make it harder to remember words or thoughts and pay attention.

Not all brain tumor survivors will have trouble with speech, but a survivor might have a greater chance of speech problems if their tumor was in the upper part of the brain.

What You Can Do About Speech and Language Problems

It can help to get rid of background noise and distractions. For example, turning off the TV in a room where a survivor is trying to have a conversation can make it easier to pay attention and hear what is being said.

It can also help survivors to take breaks when they get tired, to speak more slowly, and to focus on speaking clearly and at a steady pace.

Speaking more loudly to a survivor probably won’t help and might even be more distracting. Survivors can ask people to repeat themselves if they’re not sure they understood something someone said.

For some survivors it can help to get speech therapy to build stronger communication skills.

Hearing Problems

Trouble with hearing, like hearing loss or ringing in the ear (called tinnitus), can happen after radiation that includes the ears. Survivors who received chemotherapy that affects hearing, like cisplatin or high-dose carboplatin, have a greater chance of this happening.

After radiation to the whole brain or radiation that includes the ear, many people have problems with wax building up inside their ears. This is because radiation causes the skin of the ear canal and the wax to become much drier than normal. This results in a thick wax that sticks like glue to the ear canal.

What You Can Do About Hearing Problems 

It’s a good idea to have a hearing test (called an audiogram) at least once after radiation treatment is complete. If there are any problems, the hearing test should be done again every year or as often as the hearing specialist recommends.

For survivors with hearing loss, there are many kinds of equipment that can help, including devices students can use in the classroom, hearing aids, and cochlear implants (a small device placed by a surgeon that replaces regular hearing with a kind of electric hearing).

For problems with wax build-up, talk to your healthcare provider about using ear wax softening drops at home.

Seizures and Headaches

A seizure is an abnormal burst of electrical activity in the brain. Research on people treated with radiation shows that seizures can begin many years after surgery and radiation therapy.

Cavernomas (abnormal clusters of small blood vessels) may also develop in the brain months or years after radiation treatment. Cavernomas themselves usually don’t cause symptoms, but the blood vessel walls of a cavernoma are thin and may leak blood. Cavernomas can be seen on MRI scans. Some long-term follow-up clinics will monitor the size of cavernomas with scans over time. Others do not.

Headaches, especially in females, can happen more often in survivors who get radiation to their brains. This happens more often in survivors who smoke.

Both headaches and seizures can affect a survivor’s quality of life. The chance of developing these problems can grow as the survivor gets older.

What You Can Do About Seizures and Cerebral Vascular Problems

It’s very important to keep checking for health problems throughout the life of survivors who received radiation to the head. Survivors should talk with their doctors and nurses about headaches and pain.

For people who get headaches, it’s a good idea to keep a headache diary, including exactly what day headaches happen, where the pain is, how bad the pain is, and what medications are taken. Don’t start smoking. If you already smoke, work hard to stop.

Learn the early warning signs of stroke. Strokes happen when the flow of blood to one part of the brain is cut off. Strokes can happen to anybody but having radiation to the head may increase the chance of a stroke. Signs of a stroke include confusion that starts suddenly, trouble speaking, a severe headache, and numbness in the face, leg or arm.

The American Heart Association uses the acronym FAST: Face drooping; Arm weakness; Speech difficulty; Time to call. If you see these signs, don’t wait, call 911 right away.

Problems with Shunts

During treatment, some children may receive a VP (ventriculoperitoneal) shunt, a tube placed by a brain surgeon that allows extra fluid to flow out of the brain and down into the abdomen.

About half of the people who get a shunt will see the shunt stop working at some point. When that happens, they’ll need a shunt revision (a repair where a surgeon fixes or replaces the part of the shunt that isn’t working). Shunts can get blocked, broken, or infected.

Besides these problems, a VP shunt shouldn’t get in the way of a survivor’s day-to-day life. People with shunts don’t need to avoid any kind of activity and they don’t need to take antibiotics to keep the shunt from getting infected.

What You Can Do About Shunt Problems 

Know the signs of a failing shunt. These include headaches, vomiting, lethargy (sleepiness), irritability, swelling or redness along the shunt tract, confusion, or seizures. If any of these things happen, contact your doctor or neurosurgeon. A CT or MRI scan will show if the ventricles are swollen with fluid and if shunt revision surgery is needed.

Balance and Coordination Problems

As people get older, many have more trouble keeping their balance. Survivors of brain tumors can have balance problems at a much younger age, and those problems can get worse faster than they do in other people.

Survivors who’ve had a brain tumor in the cerebellum or posterior fossa (areas in the lower back part of the brain) seem to have the greatest chance of developing problems with coordination and balance.

Being tired can make these problems worse, no matter where in the brain the tumor was located. This is important because poor coordination affects a survivor’s quality of life and can also lead to falls and injury.

What You Can Do About Problems with Balance and Coordination

Many activities can help to improve strength and coordination. These include physical therapy, regular exercise, and things like yoga and tai chi.

Survivors who need it can make their home a safer place by adding grab bars in the bathroom around the shower, the tub, and the toilet. A raised toilet seat may also lower the danger of falling. Having a bed and chairs that are not too high or too low can help survivors get up or sit down more easily.

If you can, live in a place that doesn’t have stairs. If you do have stairs, make sure they have solid handrails. Canes and walkers may also improve safety and give a survivor more freedom to get around.

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