No two brain tumors are exactly alike, so your treatment plan will depend on a wide range of factors, from the tumor’s type, size, and location to your age and overall health. Your treatment options may also change over time.
In this section, you’ll find details about treatment options, care options, support, resources, and information for caregivers. The ABTA CareLine is also a great source of general information about brain tumors, treatment options, and social support. Contact the ABTA
Steroids are naturally occurring hormones. They are not the same as anabolic steroids used by athletes to build muscle. The steroids given to brain tumor patients are corticosteroids, hormones produced by small glands near the kidneys called the adrenal glands.
Purpose of steroids
Steroids are often used to reduce the buildup of fluids around a tumor (called edema) sometimes caused by the brain tumor or other treatments. Steroids can temporarily relieve brain tumor symptoms, improve neurological symptoms, promote a feeling of well-being, and increase appetite.
Steroids may be prescribed before, during, or after surgery. They may be prescribed if edema is seen on a MRI scan, or if swelling is causing pressure on the brain. Steroids may also be used to treat edema caused by radiation therapy.
Although they can be given through an intravenous (IV) line or by injection into a muscle (IM), steroids are most commonly administered by mouth in a pill form. Your doctor may increase or decrease the dose, depending on how the steroids are affecting you. When you no longer need steroids, your doctor will give you instructions on how to slowly reduce the dose.
Potential side effects of steroids
The most common side effects of steroids are:
- Weight gain
- Increased blood sugar levels (especially in patients with diabetes)
- Thinning of the skin
- Upset stomach
- Muscle weakness in the thighs, shoulders, and neck
- “Masking” or hiding a fever
- Mood swings
Steroids can also interact with some seizure medications, either raising or lowering the seizure medicine levels in the blood, which can affect effectiveness. Your doctor can explain other side effects that may occur with steroid use.
If you are using steroids, be sure to contact your doctor if you:
- Have a fever – even if no other symptoms are present
- Have blood in your bowel movements
- Have stomach pain
- Gain more than 5 pounds in one week
- Develop a rash
- Are very thirsty and/or urinating a lot
- Stumble or fall
- Have chest pains or difficulty breathing, which may signal a medical emergency
Surgery is usually the first step in treating most brain tumors. It’s often the preferred treatment when a tumor can be removed with minimal, if any, risk of neurological damage.
Purpose of surgery
Your doctor may recommend surgery to:
- Take a tumor sample to establish an accurate diagnosis (biopsy).
- Remove as much tumor as possible, either to relieve symptoms caused by the tumor itself or to reduce the amount of tumor left to be treated with radiation or chemotherapy.
- Create direct access to the tumor for chemotherapy, radiation implants, or genetic treatment of malignant tumors.
- Relieve seizures (due to a brain tumor) that are hard to control.
Types of surgery
Note: During most of these surgical procedures, the patient is asleep or heavily sedated. The brain does not “feel” pain, and all of the surrounding tissues (for example, the scalp) are numbed prior to surgery.
- Biopsy: Removing a sample of tumor tissue.
- Craniotomy: Removing a portion of the skull, enabling the neurosurgeon to find the tumor and remove as much of it as possible. The piece of skull is replaced after surgery.
- Craniectomy: Similar to a craniotomy, except that the portion of the skull that was removed to allow access to the brain is not replaced after surgery.
- Debulking: Reducing the tumor’s size.
- Resection: Surgical removal of a tumor.
- Partial resection: Removing only part of the tumor (due to risk of neurological damage).
- Complete resection: Removing the whole tumor.
- Shunt: Inserting a drainage system to move excess fluid from the brain to another part of the body.
- Ommaya reservoir: Inserting a small container under the scalp that is attached to a tube. This container can be used to deliver chemotherapy or remove fluid for testing.
- Skull base surgery: A minimally invasive technique used to remove a tumor located on the underside of the brain.
- Transphenoidal surgery: An approach where surgical instruments, guided by an endoscope (camera), are inserted through the nose. This technique is often used to operate on pituitary adenomas and craniopharyngiomas.
- Laser Interstitial Thermal Therapy (LITT): A minimally invasive method to destroy tumor tissue with heat (ablation).
Possible side effects of surgery
Every surgery carries some risks. Specific risks associated with brain and spine tumor surgery include:
- Balance/coordination difficulties
- Memory or cognitive problems
- Spinal fluid leakage
- Brain swelling
- Excess fluid in the brain
Your healthcare team can help you balance the risks of surgery against its potential benefits.
Chemotherapy is drug therapy for cancer. It works by killing the cancer cells, stopping them from spreading, or slowing their growth. However, it can also harm healthy cells, which causes side effects. It is typically used to treat malignant or higher grade tumors, but it may also be used to treat low grade and non-malignant tumors.
Purpose of chemotherapy
The goals of chemotherapy are to:
- Stop tumor growth by making the tumor cells unable to copy themselves.
- Artificially start the normal process of cell death (apoptosis) in the tumor.
Types of chemotherapy
There are two main types of chemotherapy drugs, categorized by how they work.
Type 1, cytostatic drugs, prevent cells from reproducing (copying themselves). They include:
- Anti-angiogenesis agents/angiogenesis inhibitors: drugs that “starve” the tumor by stopping it from growing blood vessels.
- Growth factor inhibitors: drugs that limit supply of growth factors, preventing the tumor from getting bigger.
Type 2, cytotoxic drugs, artificially start the process of cell death. They include:
- Alkylating agents: drugs that target DNA in tumor cells in a way that stops them from reproducing.
- Antimetabolites: drugs that stop tumor cells from making the enzymes needed for new cell growth.
- Anti-tumor antibiotics: drugs that stop the action of enzymes needed for cell growth, and may be able to change the environment around the cell.
- Hormones: substances that may interfere with tumor growth by blocking the tumor from producing certain proteins.
- Mitotic inhibitors: natural substances, usually plant-based, that make it harder for the tumor cells to make the proteins they need to create new cells.
- Steroids: drugs that reduce swelling around the tumor. While they are not intended to be “cytotoxic” therapy, some researchers believe that steroids have a toxic effect on tumor cells
How chemotherapy works
Chemotherapy drugs are delivered to tumor cells in one of two ways:
- Systemic delivery: Systemic drugs travel through the body in the bloodstream, cross the blood-brain barrier , and enter the tumor cells. These drugs are either taken by mouth or injected into an artery, vein, muscle, or the skin.
- Local delivery: Some drugs can be placed closer to the tumor, or within the areas of tumor growth. The goals of local delivery are to avoid delivering drugs throughout the body and to increase the concentration of the drug at the tumor site.
Potential side effects of chemotherapy
Chemotherapy drugs have the greatest effect on cells that reproduce rapidly, like those in a tumor. However, the drugs cannot always tell the difference between tumor cells and healthy cells, which can cause side effects. Some of the more common side effects of chemotherapy are:
- Fetal injury
Your doctor can give you more information about the side effects associated with your chemotherapy treatment. Talk with your doctor about ways to minimize the side effects of your chemotherapy treatment.
Potential risks of chemotherapy
Like any treatment, chemotherapy carries risks. Some of these are the more common side effects, mentioned above. Other, rarer risks include:
- Interactions with other drugs
- Balance or coordination problems
- Memory or cognitive problems
- Brain swelling
- Damage to internal organs
Your healthcare team can help you balance the risks of chemotherapy against its potential benefits.
Radiation (also called X-rays, gamma rays, or photons) either kills tumor cells directly or interferes with their ability to grow. Radiation affects both normal cells and tumor cells. However, following standard doses of radiation, healthy cells repair themselves more quickly and completely than tumor cells.
As the radiation treatments continue, an increasing number of tumor cells die. The tumor shrinks and the dead cells are broken down and disposed of by the body’s immune system.
The term “radiation” usually refers to conventional external beam radiation therapy, which is the most common form of radiation treatment for brain tumors. Other forms of radiation therapy are also available. Your doctor can tell you more about these other methods.
Radiation treatment success depends on several factors, the most significant of which are: the type of tumor being treated (some are more sensitive to radiation than others) and the size of the tumor (smaller tumors are usually more treatable than larger ones).
Purpose of radiation therapy
The goal of radiation therapy is to slow or stop brain tumor growth. Radiation may be used after surgery to remove all or part of the tumor. When a tumor is removed, some microscopic tumor cells may remain. Radiation attempts to destroy these remaining cells.
Radiation is also used to treat tumors that cannot be surgically removed and tumors that have spread to the brain from other parts of the body (metastatic brain tumors). Radiation may be used to prevent metastatic brain tumors from developing.
Sometimes radiation is used to relieve symptoms rather than eliminate the tumor. This is called palliative radiation.
How radiation therapy works
Radiation therapy is usually an outpatient procedure. Treatments are painless and take just a few minutes. A typical schedule for radiation therapy consists of one treatment per day, five days a week, for two to seven weeks.
Radiation therapy may be given before, during, or after chemotherapy, or with drugs that make tumor cells more sensitive to the radiation (radiosensitizers).
Potential side effects of radiation therapy
Most people have some side effects from radiation therapy. Side effects may include:
- Hair loss
- Skin changes
- Swelling (edema)
- Sexual effects (reduced desire)
- Blood clots
Your doctor can talk with you about ways to minimize the side effects of radiation therapy.
Stereotactic radiosurgery (SRS) is not surgery. It is a special form of radiation therapy. SRS allows precisely focused, high-dose X-ray beams to be delivered to a small, localized area of the brain. Because SRS focuses the beams more closely to the tumor than conventional radiation, it can deliver a higher, more effective dose of treatment to the tumor site.
Purpose of stereotactic radiosurgery
SRS is used to treat small, well-defined brain and spinal cord tumors. It can also be used as a tumor-targeted “boost” at the end of conventional radiation therapy.
How stereotactic radiosurgery works
Highly specialized computer-assisted equipment is used to focus tightly on the tumor. Using advanced computer planning, radiosurgery minimizes the amount of radiation received by normal brain tissue and focuses radiation in the area to be treated.
At the time of treatment, you will wear a lightweight head frame (“halo”) or a face mask for treatment. This equipment is designed to help your doctor define the exact location of the tumor and keep your head still during treatment. Once the head frame or face mask is in place, scans are taken and the treatment plan is calculated.
SRS treatment can range from 15 minutes to about two hours. Once treatment is complete, a technician will remove the head frame or face mask, and you’ll go home. (Occasionally, a patient might be kept overnight for observation.) Most people are able to resume their usual activities within a day or two.
Potential side effects of stereotactic radiosurgery
Some people have few or no side effects from SRS. When people experience side effects after SRS, it’s usually caused by brain swelling (edema) triggered by the radiation. These symptoms can include:
Hair loss in the area treated may be seen two or three weeks following the procedure. It depends on the dose of radiation received and the ability of the radiated hair follicles to heal. Regrowth usually begins in three to four months, and may be a slightly different color and/or texture than before. The scalp may also become temporarily irritated.
Some people experience delayed reactions weeks or months after treatment. These reactions can include cell death (called radionecrosis). Symptoms may be similar to the symptoms of tumor regrowth. Your treatment team can provide more specific information about side effects and how to manage them.
Proton therapy is a highly specialized form of radiosurgery that uses beams of fast-moving protons to destroy the tumor. In contrast, traditional radiation therapy uses beams of highly-charged electrons.
Purpose of proton therapy
Proton therapy allows the doctor to deliver higher doses of radiation to the tumor while limiting damage to the surrounding healthy tissue and/or organs.
How proton therapy works
Proton therapy uses a cyclotron, which is a nuclear reactor that can smash atoms to release proton, neutron, and helium ion beams. The patient is positioned on a table with a head frame or face mask covering the head. As the cyclotron smashes atoms, the protons released are directed toward the tumor through beam-shaping blocks. Based on imaging studies conducted just before treatment, the beams are programmed to match the shape of the tumor. The patient must remain perfectly still until treatment is complete.
Potential side effects of proton therapy
Proton therapy is painless. Patients treated with proton therapy generally have fewer side effects than patients treated with conventional radiation therapy. Your treatment team can provide more specific information about side effects and how to manage them.
TTFields are an FDA-approved novel therapeutic option. Studies have shown TTFields slow and reverse tumor growth by inhibiting mitosis (the process by which cells divide and replicate).
Purpose of TTFields
TTFields are used in combination with temozolomide for the treatment of glioblastoma in newly diagnosed adult patients. Usually treatment with TTFields follows surgery and radiation therapy.
TTFields are also approved in the U.S. for treatment of recurrent GBM as a monotherapy after surgical and radiation options have been exhausted.
How TTFields work
Adhesive bandages hold insulated ceramic discs (transducer arrays) that deliver electricity transformed into electromagnetic energy to the scalp. The battery operated-TTF device generates low intensity, intermediate frequency, alternating electrical fields to the brain. These electrical fields exert selective toxicity in proliferating cells thereby halting cell division and destroying the cancer cells.
Currently, a physician must prescribe the TTField device. The prescribing physician will provide instructions for using the device, replacing transducer arrays (every 4 to 7 days), and recharging and replacing batteries.
Patients must wear the device for at least 18 hours a day, taking only short breaks for personal needs, and use the device for at least four weeks.
Potential side effects of TTFields
The most common adverse reaction is a mild to moderate skin irritation.
Over half of all cancer patients seek or use Complementary and Alternative Medicine (CAM) treatments to address cancer-related symptoms or to manage the side-effects caused by cancer or cancer treatment. CAM refers to all treatment and healing practices that are used in conjunction with standard of care treatments for cancer. Many alternative therapies seek to treat illness by helping the body to heal itself or to treat the source of disease.
Be sure to share the information you find with your doctor. Together, you can decide whether a specific alternative medicine therapy is right for you. Also:
- Avoid alternative medicine practitioners who tell you to forego standard treatment in favor of the therapies they recommend.
- Be wary of any treatment claiming to have no side effects.
- Be aware that herbs, vitamins, and minerals have the potential to cause adverse reactions when combined with other medications.
- Check with your doctor or pharmacist to be sure that any alternative therapies you use (even vitamins) are compatible with your treatment regimen.
Purpose of complementary and alternative medicine
Alternative medicine offers healthcare professionals and patients another way to approach the treatment of illness.
Types of complementary and alternative medicine
Many alternative medicine techniques are part of complete “systems” of healthcare that began many years before, and/or separate from, the development of conventional medicine. Examples include:
- Traditional Medicine: These alternative medicine systems often are the healthcare rituals practiced by a given culture (eg, Asian, Indian, African).
- Homeopathic Medicine: This alternative medicine system is based on the principle that “like cures like.” In other words, the same substance that in very large doses causes the symptom of an illness, in smaller doses may cure it.
- Naturopathic Medicine: This alternative medicine system views disease as a sign of change in the way the body naturally heals itself. Naturopathic medicine emphasizes health restoration rather than disease treatment.
Given how much information about alternative medicine is available, patients are encouraged to learn as much as they can from as many sources as possible. Information about alternative medicine can be found everywhere—in books, on the Internet, from organizations promoting its use, and from friends and family.
The credentials of the person presenting the information can tell you a lot about whether or not it is valid:
- Is he/she licensed? (Not all states require licensing or certification of alternative medicine practitioners.)
- What kind of organization does he/she represent? (A business? A college or university? A nonprofit organization?)
- What is his/her educational background?
- What are his/her professional society affiliations?
Your research will help you make educated decisions about your care, should you choose to pursue alternative treatments.
Check with your doctor or pharmacist to be sure that any alternative therapies you use (even vitamins) are compatible with your treatment regimen.
A clinical trial is a research study. It is an organized way to determine if a new treatment or medical device is safe and effective. Clinical trials are also used to determine if a new treatment or device offers any benefit or advantage over what is currently available. They are particularly important because they may offer treatment options that would otherwise not be available.
Clinical trial participants are patients who have volunteered to try a new treatment or medical device.
The following may happen if you decide to participate in a clinical trial:
- You may get a new treatment for a disease before it is available to everyone.
- Researchers will provide you with medical care and more frequent health check-ups as part of your treatment.
- You may have the chance to help others get a better treatment for their health problems in the future.
There are some risks to consider when participating in a clinical trial. The treatment may have unpleasant or even serious effects. Clinical trials may have a greater time commitment than standard treatment including additional visits to the study site, additional testing or monitoring, and longer follow-up. Be sure to discuss the potential risks and benefits with your doctor when considering participating in a clinical trial.
If you are interested in participating in a clinical trial, talk with your doctor or visit TrialConnect®, the American Brain Tumor Association’s clinical trial matching service.
Purpose of clinical trials
Clinical trials play an important role in getting new drugs and medical devices to market. The US Food and Drug Administration (FDA) requires any new drug or device to be approved before being sold. To gain FDA approval, the manufacturer or distributor of a drug or device must submit full reports of the studies conducted to show that the drug or device is safe and effective for its intended use.
Clinical trials are the primary way for manufacturers to show that their products are safe and effective. They also provide opportunities to learn more about various medical conditions. The results of clinical trials are measured against the best standard therapy available for the particular condition.
Clinical trials are available throughout the world at university hospitals, cancer centers, and hospitals. Because brain tumors are relatively rare, many single institutions cannot enroll enough patients to get meaningful data in a reasonable timeframe. As a result, there are a number of a clinical cooperative groups offering brain tumor trials.
Types of clinical trials
There are several different types of clinical trials, including:
- Supportive care trials
- Prevention trials
- Early detection or screening trials
- Diagnostic trials
- Treatment trials
Questions to ask about clinical trials
To learn more about a specific clinical trial, ask the trial administrator these and other questions before participating:
- Why is the new treatment thought to be effective? Has it been tested before?
- When did the trial begin?
- How many people have been treated so far?
- How many have my type of tumor?
- How well are the study patients doing?
- What are the known possible side effects of the treatment being tested? Are they temporary or permanent? Can they be controlled or lessened some way (medications, diet, etc.)? How will they affect my daily activities?
- Will I have to get additional testing done? What kinds?
- Where will the treatment take place? Can it be given close to my home?
- How many treatments will there be? How long will each one take?
- Will the study doctors work with my doctor while I participate in the study?
- Will I need to be hospitalized for study purposes?
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.
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.
Brain tumor treatments can cause a number of mood, behavioral or cognitive symptoms that present or overlap like mental health disorders. If untreated, these side effects can cause significant change in the patient’s personality, mood, and behavior. In extreme cases, these changes can lead to situations in which the patient, their caregiver, loved ones or others are placed at risk.
Examples of neuropsychiatric symptoms include aggression, delusion, hallucination, impulsivity, mania, paranoia, psychosis, and violent behavior.
Causes of Neuropsychiatric Side Effects
Neuropsychiatric symptoms related to a brain tumor can have several causes, including injury to the brain caused by treatments and medications (e.g., corticosteroids, anti-epileptics).
How to Handle Neuropsychiatric Side Effects
Health care providers can help address neuropsychiatric symptoms. Strategies to address these symptoms include psychiatric medications, changing current medication dosages (under a health care provider’s direction), lifestyle changes, and counseling/psychotherapy.
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 neurotransmitters, which control mood
- Changes in hormone levels, which can trigger depression when out of balance
- Genetic predisposition
- 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.
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.
- Hearing loss: Survivors should have regular audiology testing. If needed, hearing aids can help.
- 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 cerebrum .
- 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.
Rehabilitation is a key part of your recovery. A targeted rehabilitation program led by trained therapists can help you get back your strength, stamina, and function. Here are your key therapy options:
Your physical therapist can help you improve your physical strength, coordination, balance, and mobility. The therapist can help you to gradually restore large motor functions and show you helpful exercises to do at home. Your program will be targeted to your needs. For example, you may focus on strength training, restoring limb movement, compensation techniques, or balancing.
You may need help with your speech skills to make sure people can understand you easily. Speech therapists also help with the swallowing problems that are associated with certain brain tumors. Your speech therapist will first test your current function and then create the best program for your needs.
Your occupational therapist will help you regain mastery of everyday tasks such as bathing, dressing, and feeding yourself. You can also get help with more advanced skills, such as doing housework, managing money, taking transportation, and shopping.
To get started, talk with your healthcare team about what kind of therapy you can benefit from and how to enroll.