Side effects are symptoms caused by brain tumor treatments. Some of the most common side effects are listed below. If you have questions about possible side effects of treatment or how long they will last, speaking with a physician is a good first step.
Fatigue is a common side effect of many brain tumor treatments, including surgery, radiation, and chemotherapy.
Symptoms of fatigue include:
- A profound lack of energy
- Feeling suddenly tired
- A heavy feeling in your limbs
- Difficulty concentrating
If you are experiencing these symptoms, tell your doctor right away. If your doctor confirms that fatigue is causing your symptoms, here are some ways to manage it.
Adjust your lifestyle
- Accept that you’re going to need some down time.
- Keep track of when your energy is up or down, and plan your days accordingly.
- Figure out what activities you can let go of or delegate to a friend, family member, caregiver, or professional.
- Set up your environment so that you spend as little energy as possible on daily tasks.
- Ask your doctor about meeting with an occupational therapist to learn energy-conservation strategies.
Eat for energy
- Eat small, frequent meals that combine complex carbs with vegetables, dairy, and some protein to keep your energy stable.
- If you have the energy to cook, focus on fresh ingredients that have lots of nutritional value.
- Prepare your food sitting down.
- Cook in large batches.
- Use kitchen time savers, from pre-cut veggies to disposable pans.
Get a little exercise
- Check with your healthcare team before starting any exercise or fitness plan.
- Try moderate exercise to boost your energy level – walking and yoga are good choices.
Focus on sleep
- Go to bed at the same time every night.
- Set a consistent routine to wind down for sleep.
- Ask your doctor to adjust your medication to avoid interruptions in the middle of the night.
- Avoid screens (your phone, TV, or computer) for at least one hour before bed.
- Add short naps (less than one hour) to your routine in the early afternoon to give you an energy boost.
Take a break
- Don’t let worries drain your energy – look into meditation, guided imagery, music therapy, yoga, or other complementary therapies to help you calm your mind.
- Find a place where you feel peaceful and spend time there alone.
- Give time to activities that you enjoy and that take your mind off your treatments.
Memory & Cognitive Changes
You may experience changes in your memory during treatment. Treatment can also affect your cognitive abilities – the way you think, reason, and process information. Memory and cognitive changes can result from medications or other side effects like fatigue.
It can be hard to predict how treatment may affect your cognition and memory, because it depends on your specific tumor, its location, and the treatment. Side effects can range from mild to severe and can be temporary or permanent; however, there are things you can do to help.
- There are two different kinds of memory: short-term and long-term memory.
- Short-term memory serves as a holding tank for information for about 15-30 seconds.
- Long-term memory stores information for later retrieval.
- It is not uncommon to lose short-term memory function and still retain an excellent long-term memory.
Examples of changes in memory and cognition
If you or your caregiver notice any changes in your thinking and memory, tell your doctor. Here are some examples:
- Trouble remembering the names for common objects – such as “cup” – or other frequently used or simple words
- Problems with short-term memory (asking what’s for dinner, and then asking again a few minutes later as if it is a new question)
- Difficulty reading or recognizing words or numbers on a page
- Inability to focus on one task
- Inability to complete basic tasks or to follow simple instructions (needing coaching on how to put clothes in the hamper)
- Trouble with motor skills, such as using silverware, buttoning clothes, or walking
Once you notice side effects, the next step is to talk with your treatment team. Your doctor will evaluate how your memory and cognition have changed and suggest therapies designed to re-teach thinking, reasoning, or memory skills that have been affected during treatment. These therapies have a variety of names, including:
- Cognitive rehabilitation theory
- Cognitive retraining
- Memory retraining
- Cognitive rehabilitation
- Teaching memory skills
- Brain injury rehabilitation
- Brain therapy
To prepare for your cognitive and memory evaluation:
- Write down the changes you or your caregiver have noticed in your thinking, reasoning, or memory.
- Share your list with your doctor, who may conduct an evaluation or refer you to a neuropsychologist or a neurologist who specializes in helping people whose memory or cognition have been affected by brain tumors or trauma.
- Get a good night’s sleep, eat a well-balanced meal, and dress in comfortable clothing before your evaluation appointment.
- Don’t try to study for the evaluation – it’s best if you show the full extent of the changes in your memory or thinking, so that your doctor can recommend the best therapy for you.
- Have someone come with you – it’s always helpful to have another person there to hear and absorb what the doctor is saying.
The brain tumor journey can be long and difficult, and depression can be a side effect. The tumor’s location can affect mood, and treatments that affect brain chemistry ̶ including surgery, chemotherapy, and medication ̶ can trigger depression as well.
Causes of depression
Depression is a serious condition that can be caused by:
- Changes in the brain’s chemical neurotransmittersA messenger of neurologic information from one cell to another, which control mood
- Changes in hormone levels, which can trigger depression when out of balance
- Genetic predispositionGenetic changes that make a person more likely to develop a certain disease or condition
- Physical changes to the brain, such as brain tumor treatment
- Major life events, such as a brain tumor diagnosis
Symptoms of depression
The intensity and long-lasting nature of depression symptoms differentiates depression from normal emotions. Symptoms include:
- Feelings of sadness, hopelessness, or unhappiness
- Irritability or frustration, even over small matters
- Loss of interest or pleasure in normal activities
- Reduced sex drive
- Insomnia or excessive sleeping
- Changes in appetite – often decreased appetite, but sometimes depression causes increased cravings for food
- Agitation or restlessness – pacing, hand-wringing, or an inability to sit still
- Slowed thinking, speaking, or body movements
- Indecisiveness, distractibility, and decreased concentration
- Fatigue, tiredness, and loss of energy – even small tasks may seem to require a lot of effort
- Trouble thinking, concentrating, making decisions, and remembering things
- Frequent thoughts of death, dying, or suicide
- Crying spells
- Unexplained physical problems, such as back pain or headaches
Symptoms of depression can be similar to common postsurgical side effects, so your medical team may miss the common signs of this illness.
The good news is that depression is a treatable condition. Talk with your healthcare team to find a treatment that’s right for you.
Cancer treatments – including some chemotherapies and radiation therapies – can affect fertility. Brain tumor survivors may face reproductive challenges as a result of their treatment.
If you are planning to have children in the future – or want to keep that possibility open – it’s a good idea to explore fertility preservation before treatment begins. Talk with your doctor about your concerns. If you have already started treatment, your doctor can evaluate its effect on fertility and refer you to a reproductive endocrinologist or urologist to determine which options are available.
Late Effects of Treatment
Surviving a brain tumor is cause for celebration. However, some side effects may happen long after treatment is completed. These are known as late effects. Chemotherapy, radiation, and surgery can all result in late effects. A symptom is considered a late effect if it occurs several months or years after treatment is completed.
It is important to be prepared for the possibility of late effects. Here are some common late effects, and what you can do to minimize their impact:
Chemotherapy late effects
Late effects of chemotherapy can vary depending on what drugs were used. Survivors should have regular follow-up visits with their healthcare team. Late effects of chemotherapy can include:
- Fertility problems: Survivors should be checked annually for hormone levels.
- Hearing loss or tinnitus (ringing in the ears): Survivors should have regular audiology testing. If needed, hearing aids can help.
- Dental issues: Increased risk of cavities, thinning of tooth enamel and problems with roots are likely. Survivors should have regular checkups (every six months) at the dentist.
- Vision problems: Radiation near the optic nerve can cause vision loss. Cataracts may also surface as a late effect after radiation treatment. Survivors should have their vision checked each year.
- Behavior changes: Survivors and their families should be vigilant about noticing changes in emotional response or behavior. If changes develop, talk with the treatment team or neuropsychologist for evaluation.
Radiation late effects
Radiation therapy carries a higher risk of late effects than chemotherapy does. They include:
- Cognitive issues: Survivors may experience changes in their memory, motor skills, learning, and behavior. Children who have received radiation therapy may have learning disabilities.
- Hormone problems: Radiation can affect the body’s thyroid and reproductive hormones. Survivors should be screened each year to check their thyroid function.
- Fertility challenges: Radiation can have long-term effects on fertility for both women and men. Survivors planning a family should talk with their healthcare team about their options.
Surgery Late Effects
Surgery’s late effects are generally confined to the areas where the surgery occurred. They could include:
- Cognitive issues (problems with learning, thinking, or memory) if the tumor was removed from the cerebrumThe front part of the brain that consists of both right and left hemispheres .
- Emotional and behavioral changes in patients who have undergone brain tumor surgery. Survivors should report any changes in emotion or behavior to their doctor.
- Hormone problems if surgery was near the pituitary gland. Children who have undergone surgery should be closely monitored through puberty. Adults should also be checked regularly for normal activity in the pituitary and thyroid glands.
Seizures – attacks caused by abnormal electrical activity in the brain – may be caused by brain tumor treatments. Normally, your body’s nerve cells communicate with each other via carefully controlled electrical signals. If something interferes with these signals, or communication pathways become compressed, stretched, or blocked – as can happen with a brain tumor or with various brain tumor treatments including surgery, chemotherapy, and radiation – it can result in a seizure.
Common features of seizures include:
- Sudden onset
- Loss of consciousness and body tone, followed by twitching and relaxing muscle contractions
- Loss of control of bodily functions
- Short periods of no breathing (30 seconds); skin may turn dusky blue
- Short duration (2-3 minutes)
Tips for managing seizures
If you have a seizure after brain tumor treatment, talk with your doctor. Most seizures can be controlled with medications called anti-epileptic drugs (AEDs).
Before a seizure:
- Notice warning signs (if there are any): Seizures can happen at random – at any time, and with no warning. However, there are sometimes warning signs that signal when a seizure is about to occur. This warning is called an “aura.” Auras vary by individual and can take the form of a headache, a change of mood, a muscle twitch, or a particular smell.
After a seizure:
- Allow time for recovery: After the seizure passes, the person may feel sleepy or confused, have a headache or sore muscles, or experience brief weakness or numbness.
- Ask your doctor if the seizure medication dosage needs to be adjusted.
- Keep a record of seizure symptoms.