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Raise Your Voice Program: FAQ – Frequently Asked Questions

What is a brain tumor?

A brain tumor consists of a collection of abnormally functioning brain cells that have begun to grow and reproduce inappropriately. As this group of cells grows, it compresses and damages normal brain structures, which causes a variety of neurological symptoms.

How is a brain tumor recognized?

There are no symptoms that are unique to brain tumors. When symptoms do occur, they are due to damage to the region of the brain where the tumor happens to be located. Thus, tumors in the front of the brain can produce personality changes while tumors in the middle of the brain can affect strength, sensation, and vision. Seizures can also occur with brain tumors, as can headaches. However, a variety of other neurological diseases can cause each of these symptoms. Recognizing that neurological symptoms are due to a brain tumor requires several tests (see below).

Does a severe headache indicate the presence of a brain tumor?

Not necessarily. Headaches do occur with brain tumors, typically when they become large and are associated with swelling, but they are still an uncommon symptom. Headaches are far more common in other diseases, including migraines and arthritis of the neck. If you are now having headaches that you never had before, you should see your doctor. However, the probability is still relatively low that the onset of headaches is caused by a brain tumor.

How is a definitive diagnosis of a brain tumor made?

Any of the above symptoms may lead your doctor to perform a study that produces an image of the brain. The most commonly used method to do this is magnetic resonance imaging (MRI). This imaging technique can produce highresolution images of tumors, and can provide some information on the nature and behavior of a brain tumor. However, as with the symptoms listed above, a variety of other diseases can also produce changes on the MRI that can resemble a brain tumor. Ultimately, making the diagnosis of a brain tumor requires examining the abnormal tissue shown by the MRI under a microscope. This is routinely done by performing a  brain biopsy, in which a neurosurgeon removes the abnormal tissue from the brain and has it evaluated by a neuropathologist under the microscope. A variety of sophisticated tests can be performed on the tissue to not only identify what type of tumor is present, but what types of treatment are most appropriate. When a tumor is suspected after performing the MRI, the neurosurgeon may also recommend a “resection”—i.e., removing as much tumor as can be done safely. Current data suggests that patients do better when as much of their tumor as possible can be removed.

What is the difference between a benign and malignant brain tumor?

The terms benign and malignant can be misleading when applied to brain tumors. These terms were first developed to apply to other cancers elsewhere in the body. “Benign” tumors remain localized and do not spread elsewhere in the body (“metastasize”), and can often be cured by complete surgical removal; “malignant” tumors characteristically spread to other organs and tissues, including the brain. By contrast, even the most aggressive primary brain tumors rarely metastasize outside of the brain and central nervous system. However, both high-grade, aggressive brain tumors and low-grade, indolent brain tumors can and often do invade normal brain tissue, and this invasiveness can produce a great deal of neurological disability or even death. Thus, even non-invasive brain tumors can have malignant consequences if they occur in an important part of the brain. Therefore, rather than use the terms “benign” and “malignant,” we use the term “high-grade” to describe rapidly growing, aggressive brain tumors and “low-grade” to describe slowly growing, more indolent brain tumors.

How many different types of brain tumors are there?

Each of the cell types in the brain can become “transformed” (i.e., cancerous) and produce a brain tumor, and these tumors are classified by the type of cell of origin. While there are over twenty different types of brain tumors based on the cell type that creates the tumor, only a handful of these are commonly seen. These are called “primary brain tumors,” since they originate in the brain. In addition, however, the brain can often be a location where tumors from elsewhere in the body spread. These are called “metastatic brain tumors.”

What are the most common brain tumors?

In adults, the most common brain tumors are derived from astrocytes (the cells that make up the “connective tissue” of the brain) and meningeal cells (the cells that make up the lining of the brain). Tumors derived from astrocytes include astrocytomas, anaplastic astrocytomas, and glioblastoma multiforme. Tumors derived from meningeal cells are called meningiomas. In children, a different group of tumors are seen, which are rarely seen in adults and derived from cells that are normally present only in the fetus, but abnormally retained after birth.

What factors affect the chances for survival for patients after a malignant brain tumor?

For primary brain tumors, the most important factors that affect survival are the following: grade of tumor (more aggressive tumors have a worse prognosis); location of the tumor (tumors which the surgeon can remove almost completely because of their location are associated with a better prognosis); and age (younger patients tend to do better).

For metastatic tumors, the most important prognostic factors are: location of the brain metastasis (completely removable tumors or tumors that can be treated with a Gamma Knife or stereotactic radiosurgery are associated with a better prognosis); and the amount of cancer elsewhere in the body (patients whose cancer elsewhere in the body is well-controlled do better).

What options are there to treat a metastatic tumor in the brain?

The two main options are to remove the metastatic tumor by surgery, or to destroy it by focused radiation (Gamma Knife, stereotactic radiosurgery, or proton beam therapy). Conventional radiation therapy, or external beam therapy, is also used to improve the prognosis and prevent recurrences.

 

What tests are needed to determine if a patient would be appropriate for Gamma Knife?

 

Gamma Knife is an appropriate treatment for metastatic brain tumors (as opposed to primary brain tumors) if the tumor is not too big, if there are not too many tumors, and if the tumor is located in a region of the brain that can handle the temporary swelling that often develops after treatment. All of these issues need to be evaluated by the treating neurosurgeon and radiation oncologist to decide if Gamma Knife is appropriate.

 

Will the patient be awake during Gamma Knife treatment?

 

Yes.

Will the patient’s head be shaved for Gamma Knife treatment?

Generally not.

What can the patient expect after Gamma Knife treatment?

The Gamma Knife typically produces some brain swelling after treatment. This is generally mild and temporary, resolves after several weeks, and can be treated with medication.

Will my insurance cover Gamma Knife treatment for brain metastases?

It should. If your insurance rejects your application, you should appeal this decision, since the efficacy of Gamma Knife treatment for brain metastases has been established.

What are the complications of radiation/chemotherapy treatments?

Conventional radiation therapy (often referred to as “external beam radiation therapy”) has both short-term and long-term complications. The short-term complications are typically temporary, and include fatigue, loss of taste, and a skin rash over the treated area. Hair loss over the treated area is almost always seen, and may be reversible over the subsequent year. The long-term complications include some loss of memory and higher cognitive function. The severity of these symptoms is determined by how much normal brain tissue is also treated. Newer methods of applying radiation therapy have significantly lessened the severity of long-term complications. You should ask your radiation therapist if these newer methods (including “conformal radiation therapy,” “intensity-modulated radiation therapy,” and “CT TomoTherapy”) are available in your case.

Conventional chemotherapy typically affects the ability of normal tissue to grow. Thus, bone marrow, which produces white blood cells (which fight off infection), red blood cells (which carry oxygen to the tissues), and platelets (which prevent bleeding) can be suppressed with chemotherapy. This suppression can lead to low white blood cell, red blood cell, and platelet counts. These problems can be treated with growth factors (Neulasta for white blood cells and Epogen for red blood cells) and platelet transfusions. However, the newest chemotherapy drugs used for treating primary brain tumors are far less likely to produce these problems. These newer drugs do have their own side effects, which are generally mild and treatable. You should ask your doctor in detail what these various side effects are and what interactions (if any) there are with any other medications you are taking.

What causes brain tumors?

A history of radiation to the brain does increase the risk of all types of primary brain tumors. This should not be a reason to avoid radiation therapy if your doctor prescribes it, since the risk of this complication is still low. In about 10% of patients there is a strong family history, implying genetic factors may have a role in this small subset of patients. Other epidemiologic studies have failed to reveal any common explanation for brain tumors, so in most cases, we have no explanation for what causes
primary brain tumors in most patients.

The risk of developing a specific type of brain tumor is related to age. Older patients tend to have more aggressive primary brain tumors, and younger patients tend to get less aggressive forms. However, we are noticing an increase in the frequency of the more aggressive tumors in younger patients, which may suggest that some environmental factors contribute to the formation of brain tumors. Unfortunately, we do
not have any good indication of what these factors are.

What does it mean when a brain tumor is in remission?

It means that all signs of the tumor (as evaluated by MRI) are gone. This does not mean that the tumor is cured. Rather, it means that our current imaging techniques, including MRI, are not sufficiently sensitive to pick up any remaining few malignant tumor cells. This is why we often continue to treat brain tumors with chemotherapy once all signs of the tumor are gone.

What are recurrent tumors?

These are tumors that have come back after remission. This is a common event for high-grade astrocytomas (anaplastic astrocytomas and glioblastoma multiforme), and these recurrences are now treated with a variety of new drugs that were not available as recently as five years ago. This implies that if you have a recurrent primary brain tumor, you should aggressively seek a physician who is comfortable treating this problem with the latest agents that are available (see below).

How is a brain tumor treated?

Treatment depends on the nature of the tumor. For high-grade primary brain tumors, treatment typically consists of surgery, radiation therapy, and chemotherapy. For low-grade tumors, treatment might consist of surgery and/or radiation therapy. For metastatic brain tumors, treatment typically consists (when possible) of surgery and radiation therapy. Chemotherapy for the treatment of metastatic brain tumors is currently being investigated.

How do I choose the best doctor and medical center?

Brain tumors are not common diseases. The experience of your treating physician or physicians matters a lot. Hence, adequately taking care of patients with brain tumors requires the involvement of physicians who are current on the latest information about these type of cancers, and are experienced in treating them. This generally means getting care from faculty of a university-affiliated hospital or medical center. You should ask any potential treating physician how many patients with brain tumors they have cared for over the last year, how many experimental or investigational protocols in brain tumor therapy they are running (centers at the cutting edge will be performing clinical investigative studies, since the optimal treatment for brain tumors is constantly changing), and what their experience with your particular type of tumor has been. Getting a second opinion is definitely a good idea—this will allow you to check out the reputations of the other physicians you have seen by asking their colleagues, and will give you a sense of the range of treatment choices for your particular tumor.

Once a brain tumor is removed or biopsied, how long does it take to identify how
aggressive a tumor it is?

The tissue removed during surgery is reviewed immediately by the pathologist using a technique called “frozen sectioning.” This provides the pathologist with a rough idea as to whether the tissue contains the tumor and whether the tissue is adequate to make a diagnosis. However, a final diagnosis requires more detailed examination and a process called “paraffin embedding and sectioning,” which takes one to two days. This yields material that is generally adequate to determine if the tumor is aggressive or low-grade, and which type of tumor it is. Additional testing is occasionally performed to determine if the tumor contains markers that predict its responsiveness to chemotherapy, and these tests generally take one week.

What is the average length of hospitalization and recovery time after brain tumor surgery?

When the surgeon performs a biopsy, the hospitalization is typically one day, and recovery is very fast. More extensive procedures that involve removal of all or some of the readily visible tumor involve longer hospital stays (four to six days) and a longer recovery period (three to six weeks). While these may be issues for you to discuss with your neurosurgeon, you should remember that patients tend to do better when as much of the tumor as possible is removed.

What are some suggestions for telling family members about the diagnosis of a brain
tumor?

The diagnosis of a high-grade brain tumor is a serious business, and carries with it a heavy emotional burden for patients and their families. It is important for doctors who are caring for these patients to keep a balanced perspective when discussing the diagnosis of a brain tumor and its implications. In addition to emphasizing the seriousness of the diagnosis and the potential for disability and death, it is also important to emphasize that progress in understanding and treating aggressive brain tumors has been accelerating over the last decade. What is considered the “optimal” treatment for these diseases changes every six months to one year. This is a reflection of the intensive research being performed by clinicians and scientists around the country, most of whom have been supported by research grants from the National Institutes of Health (NIH).

Recently, these funds have become much harder to obtain because of inadequate appropriations to the NIH budget from the federal government. Hence, for progress to continue in brain tumor research, it will remain important for patients and their families to lobby for continued support of brain tumor research through the current patient advocacy groups. These include the American Brain Tumor Association (www.abta.org), The Brain Tumor Society (www.tbts.org), The National Brain Tumor Foundation (www.braintumor.org), The Pediatric Brain Tumor Foundation (www.curethekids.org), The Pediatric Brain Tumor Consortium (www.pbtc.org), The Brain Tumor Funders’ Collaborative (www.braintumorfunders.org), and others available on the web.

How are tumors graded?

Typically, primary brain tumors are graded based on how aggressive they appear under the microscope. Signs of aggressiveness include an increase in the number of cells in the tissue (“hypercellularity”), abnormal cell shape (“pleomorphism”), evidence of blood vessel growth (“angiogenesis”), and cell death (“necrosis”). The more of these features that are present, the more aggressive a tumor is likely to behave and the higher the grade. It should be kept in mind that many primary brain tumors have some regions that have only a few of these features, while other regions have more. Neuropathologists typically grade brain tumors by their most aggressive-looking regions, since this predicts likely tumor behavior.

What are clinical trials and how do I find one?

Finding the best treatments for brain tumors still requires investigations of novel, promising drugs in humans with these diseases. While laboratory investigations in experimental animals provide valuable information on how such drugs might work in humans, the final proof is to study these drugs in patients with brain tumors. In order for a drug to enter a human clinical investigative trial, it has to pass a series of rigorous reviews to ensure that the patients who enroll in these trials are adequately protected. In order for a promising drug to be approved by the Food and Drug Administration (FDA) for use in humans with brain tumors, it must be examined in three types of clinical trials. Phase I trials attempt to determine if the drug is safe, and what the maximum tolerated dose (MTD) of the drug is. Once the MTD is determined, a phase II trial is undertaken, and its goal is to determine how frequently patients respond to the drug when it is administered at the MTD. This leads to a phase III trial, where the drug in question is compared to the current standard of therapy to see how it compares. Completing these three phases can take as long as five to ten years, and is generally required before the drug can be approved by the FDA.

Progress in brain tumor treatment will only occur with ongoing clinical trials that are designed to improve how we treat this disease. There are several ways to find out what trials are available near you. One is to check the websites of the two NIHsupported brain tumor clinical research consortia (www.nabtt.org). A second is to review the NIH website on clinical trials (www.clinicaltrials.gov). A third is to ask your doctor for referral to a medical center that conducts clinical trials in brain tumor therapy.

What supportive services are available for brain tumor patients?

This can vary enormously from region to region. Several of the patient advocacy groups referenced above have information on support services available in your community. Alternatively, you can ask your doctor for a list of available services.

What are steroids and can they have an adverse effect on a patient?

Steroids are drugs that are commonly used for patients with brain tumors. They are used to reduce the swelling (“edema”) that occurs as brain tumors grow. Brain edema frequently causes neurological problems, and can rapidly respond to the use of steroids. Common steroid drugs include dexamethasone (Decadron) and prednisone. However, steroids are not without side effects. Prolonged usage can cause weight gain, difficulty with sleep, depression, hypertension, diabetes, thinning of the bones (“osteoporosis”), thinning of the skin and easy bruising, and other side effects.

Doctors use these drugs for as short a period of time as possible, and only because prolonged brain edema is more dangerous than many of these side effects. Clinical trials are currently underway to examine other drugs that could substitute for steroids and help patients avoid many of these side effects. You should check with your doctor to see if you might be eligible for any such trials in your community.

How can the patient cope with fatigue?

Fatigue is common after radiation therapy, and is seen as well with some prolonged chemotherapy treatment schedules. It is often self-limited and can improve somewhat with mild regular exercise. For patients who need to work through periods of fatigue, doctors can prescribe medications that aid in overcoming this symptom. These medications include Ritalin, Cylert, Provigil, and Amantadine. You should ask your doctor if any of these medications would be appropriate for your situation. You should also be aware that other diseases can cause fatigue, including hypothyroidism, diabetes, malnutrition, and depression. Your doctor should be considering these diseases as well when you discuss your symptoms of fatigue.

Will I lose permanent function in the part of the brain that the tumor is in?

That depends. Part of the damage from brain tumors is due to the edema that these tumors can produce. Edema is generally reversible, particularly with steroids and surgery, and the affected region of the brain will recover once the edema has resolved. However, some of the damage is produced by the tumor itself, particularly if the tumor is aggressive and has been growing rapidly, and this damage is generally permanent, since the brain cannot regrow after it has been damaged. Nevertheless, it should be kept in mind that the brain retains a remarkable degree of plasticity—i.e., it can be retrained after an injury, even in adults. This can only happen with rehabilitation. Hence, physical therapy, occupational therapy, and speech and cognitive therapy all are essential treatments that are commonly used to help brain tumor patients recover as completely as possible.

What kinds of doctors treat brain tumors?

The optimal treatment of brain tumors requires a multi-disciplinary team of physicians who work together to bring the most effective treatment to a patient. These physicians include neuro-oncologists; neurosurgeons; radiation oncologists; neuropathologists; neuropsychologists; psychiatrists; nurse practitioners; social workers; and speech, occupational, and physical therapists. The key is that all of these practitioners need to interact together. This typically occurs in brain tumor specialty centers through a weekly meeting, called a “brain tumor board” where ongoing clinical issues are discussed and a consensus on the treatment of each patient is developed.

How is sexuality and fertility affected by brain tumors, radiation and chemotherapy?

Sexuality is very dependent on the patient’s general state of health and wellbeing. It should therefore not be surprising that being given the diagnosis of an aggressive brain tumor temporarily reduces sex drive (“libido”). This can often be helped with short-term counseling. The diagnosis of a brain tumor can also stress the most stable of relationships, and if this is a contributing issue, it can often be addressed by marital or couples counseling.

Brain tumors themselves can affect sexuality, particularly if the tumor involves regions of the brain that control the release of hormones that affect libido, including estrogen, progesterone, and testosterone. These same regions of the brain can be damaged by radiation therapy, leading to the same set of problems. Fertility in both males and females can be affected by chemotherapy. Male patients who are interested in having children during or after their treatment with chemotherapy should consider banking their sperm prior to treatment. Banking of ova for women about to begin chemotherapy is less routine, but can be considered if facilities are available in your community. Chemotherapy and radiation therapy can accelerate the onset of menopause in women, and loss of periods (“amenorrhea”) is common in women undergoing treatment.

 


If you have any questions about the content of this manual, please email info@voicesagainstbraincancer.org.

 

 

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