Part Eight - Complications of Brain Tumors and Their Treatment

65.   Can I expect to have brain damage as a result of surgery, radiation therapy, or other treatment?

66.   I experience short periods in which I can't speak. This happens several times a day. I never black out, but my neurologist says that I could be having seizures. Is this common?

67.   I had seizures before my tumor was diagnosed, but I haven't had one since. How long do I need to take anticonvulsant medication?

68.   Since the completion of my chemotherapy, I have noticed that I'm more short of breath. Why is this? Will this improve?

69.   Over the past several days, I have noticed that my left leg seems swollen and tight compared to my right. When I called my oncologist's office and talked to the nurse, she told me to go to the emergency room immediately. What's the problem? Why do I have to go to the ER?

70.   Are infections more common in patients with brain tumors?

71.   Will my cancer treatments cause permanent infertility?

72.   I've always been healthy, but now that I have a brain tumor I worry about every little symptom. What are the symptoms I should look for, and when should I call my doctor?

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65.   Can I expect to have brain damage as a result of surgery, radiation therapy, or other treatment?

A neurological deficit (a change in the brain that results in abnormal or reduced function) does not necessarily follow surgery or other therapy. The size and the location of your tumor may actually be creating a neurological deficit. This may improve when the tumor is removed and the pressure on the nearby brain structures returns to normal.

Neurosurgeons carefully evaluate the tumor's position in relation to the other brain structures. The type of surgery recommended is based on whether a permanent neurological deficit can be prevented.  It is possible, however, that the tumor will be more difficult to remove than anticipated, or that bleeding or other complications will occur following surgery. The neurosurgeon will explain all of these risks to you before surgery.

The temporary disability that may occur after surgery, which often improves with rehabilitation, must be distinguished from the late effects of radiation therapy and chemotherapy. Although loss of strength or coordination is upsetting to some patients, intellectual decline and loss of short-term memory can be even more devastating. These effects on cognitive function may occur in patients who have achieved remission. Therefore, studying these effects must separate patients who have cognitive loss because of tumor progression.

Most studies of cognitive decline following brain tumor treatment have occurred in children. These children were long-term survivors (five years or longer), and most had received surgery and radiation therapy. Children who were younger at the time of diagnosis, who had larger radiation fields, and who had increased intracranial pressure at the time of diagnosis were found to be at increased risk for IQ loss and poor performance in school.

In one study of adults who survived primary and metastatic brain tumors at least one year, 12% suffered dementia and another 6% suffered psychological problems related to radiation therapy. Another study of adults treated for malignant brain tumors revealed that younger patients were more likely to improve over time, and most patients were able to return to their previous employment.

Patients at high risk for cognitive decline include those who are very young or very old at the time of diagnosis and treatment, those who have tumors of the cerebral hemispheres, and those who have radiation doses that include large daily fractions.

Although chemotherapy can also cause cognitive decline, it is difficult to separate the effects of chemotherapy from those caused by radiation therapy in patients who have received both types of treatment. Long-term survivors of primary CNS lymphoma have a higher rate of cognitive decline with chemotherapy and whole brain radiation therapy. High-dose chemotherapy paired with blood-brain barrier disruption, however, has not resulted in substantial intellectual impairment. This treatment success has increased the number of long-term survivors of primary CNS lymphoma, so recent research has focused on maintaining intellectual function in patients. As a result, a number of treatment protocols for CNS lymphoma have eliminated whole brain radiation therapy. 

In most studies, it appears that aggressive treatment with either chemotherapy and radiation therapy or high doses of radiation therapy may yield the largest number of long-term survivors. Unfortunately, these treatment approaches also increases the risk for intellectual decline. 

M.L.'s comment:

My husband and my parents were concerned that I would come out of brain surgery a changed person. When a person goes into the operating room for other types of surgery, he or she comes out physically changed, meaning the person may not have a bladder any more or may no longer have a breast. The person's emotional state may be temporarily unstable, but the mind remains the same. When a person undergoes surgery on the brain, there is a fear that the person who comes out of the surgery won't be the same person that went in. Your brain controls all of your functions such as memory, speech, and motor skills. If a tumor is in a location near any of these functional areas, there is a very good chance that you may not have the same essence that you once had. The thought, "you don't come out the way you went in" is every patient and caregiver's concern.

66.   I experience short periods in which I can't speak. This happens several times a day. I never black out, but my neurologist says that I could be having seizures. Is this common?

About one-third of all brain tumor patients have seizures. These seizures may occur as the first symptom, or may occur months or years after diagnosis. Some tumor types are more commonly associated with seizures, particularly oligodendrogliomas. Seizures can be classified as partial or generalized.

Partial seizures originate from a specific area in the brain, often the area around the tumor. A partial seizure may have motor symptoms such as hand movement, or sensory symptoms such as numbness or tingling. A simple partial seizure does not impair consciousness; a complex partial seizure does impair consciousness and the patient does not remember it.

Generalized seizures involve both cerebral hemispheres and impair consciousness. A tonic-clonic seizure, often called grand mal seizure, involves spasm of the body limbs and trunk muscles, and the patient may have difficulty breathing. The patient loses consciousness during the seizure and is confused after the seizure. Weakness, muscle pain, and headache commonly occur following a tonic-clonic seizure. 

Status epilepticus, the continuation of a seizure or series of seizures without regaining consciousness, is a life-threatening condition. Patients with status epilepticus should be treated in an intensive care unit with intravenous medication and supplemental oxygen.

An electroencephalogram (EEG) may be helpful in determining whether the episodes you experience are seizures; however, a normal EEG does not completely eliminate the possibility of a seizure disorder. In some hospitals, 24-hour EEG monitoring is available to determine whether a patient has infrequent seizures that may not be detected with a standard EEG.

67.   I had seizures before my tumor was diagnosed, but I haven't had one since. How long do I need to take anticonvulsant medication?

Certain types of tumors are more commonly associated with seizures. These include lower grade tumors such as oligodendroglioma, astrocytoma, ganglioglioma, and dysembryoplastic neuroepithelial tumors. Occasionally, gross total resection of the tumor is possible and only short-term therapy with anticonvulsants is required, as long as the patient has remained seizure-free after the operation.  Some patients can have surgical removal of tumor and an adjacent area that is determined during the operation to be the origin of the seizures.  This may also allow eventual discontinuation of anticonvulsant therapy.

For patients with residual tumor on MRI, anticonvulsant therapy should be continued.  Tumor progression, drug interactions, and electrolyte imbalances can trigger further seizures, even when anticonvulsant drugs are used. It is extremely important to comply with your doctor's recommendations regarding anticonvulsant medication and follow-up. Never taper or discontinue your anticonvulsant medication without checking with your doctor.

68.   Since the completion of my chemotherapy, I have noticed that I'm more short of breath. Why is this? Will this improve?

The pulmonary toxicity of some chemotherapy drugs, especially the nitrosoureas BCNU and CCNU, may not be apparent until months or even years later. Some patients have low-grade fever, cough, and shortness of breath on exertion, but their chest x-ray may appear normal. Your doctor may order pulmonary function tests. These tests measure lung volumes, force of inhalation and exhalation, and gas exchange capability. A reduction in the gas exchange capability of the lung can be measured with a small amount of carbon monoxide. This is a sensitive test that determines whether the lung has developed scarring or fibrosis, a condition that prevents inhaled oxygen from reaching the red blood cells. Patients who develop symptoms of pulmonary fibrosis can be treated with oral steroid therapy (prednisone) for several weeks. Some patients require supplemental oxygen. Although the risk of developing pulmonary toxicity from BCNU or CCNU is higher with multiple cycles of therapy, patients who had lung disease or who smoked before treatment with chemotherapy may develop toxicity earlier. Other drugs that may cause lung toxicity include bleomycin, methotrexate, cyclophosphamide, and procarbazine.

Pulmonary toxicity can be disabling or fatal, even in long-term survivors of brain tumors. Monitoring symptoms and pulmonary function tests may help detect early signs of pulmonary fibrosis so that treatment can be modified if needed. However, treatment modification may involve stopping the therapy that is effective in controlling the tumor.

69.   Over the past several days, I have noticed that my left leg seems swollen and tight compared to my right. When I called my oncologist's office and talked to the nurse, she told me to go to the emergency room immediately. What's the problem? Why do I have to go to the ER?

The nurse is concerned that you may have a deep vein thrombosis (DVT), a blood clot in a large vein. The large veins of the legs may develop long, thick clots that block the return of blood flow to the heart. This can cause pain and swelling. The most dangerous complication of a DVT, however, occurs if the clot breaks away from the walls of the vein and travels to the heart. A large clot can become lodged in the heart valves, but more commonly, the clot becomes lodged in the arteries of the lung. A clot that has clogged the pulmonary arteries is called a pulmonary embolus. A pulmonary embolus can cause sudden death. It has been estimated that up to 15% of all cancer patients die of pulmonary embolus.

Although DVT does not always result in pulmonary embolus, the presence of a clot in the extremities should be taken very seriously. Doctors hospitalize patients with DVT to keep them at bed rest, to begin anticoagulant therapy, and to evaluate further for evidence of pulmonary embolus.

A DVT in the lower limbs can be detected by ultrasound, which can detect blood flow through the veins below the surface of the skin and muscle. The most dangerous clots are those in the deep veins of the thigh and pelvis because these vessels are quite large.

A pulmonary embolus does not always cause symptoms. Some clots break up gradually, releasing a shower of small clots that lodge in the pulmonary vessels. A large clot typically causes shortness of breath, chest pain, or cough. Although a chest x-ray may be normal, other tests, such as a ventilation/perfusion scan or a chest CT angiogram, may show a loss of normal blood flow to one or both lungs. Patients may require supplemental oxygen for several days because of this blockage of blood flow to the lung.

Anticoagulants (blood thinners), such as heparin, enoxaparin (Lovenox), dalteparin (Fragmin), and tinzaparin (Innohep), prevent the development of further clots. However, these drugs are all given by injection. Many patients prefer to take an oral anticoagulant called warfarin (Coumadin). Patients taking warfarin must be closely monitored with regular blood tests because of the drug's interactions with other medications and certain foods.

Some DVT patients, including those with recent neurosurgery, are at risk for bleeding complications from anticoagulants. Such patients may benefit from placement of an inferior vena cava (IVC) filter, which is an internal device that is placed into the large vein below the heart to act as a screen for blood clots that may break off and travel to the heart and lungs. An IVC filter is often used in combination with an anticoagulant because DVT may still form in the limbs, causing pain and swelling.

It is not always possible to predict or prevent DVT. Patients who are not ambulatory, who have had recent surgery, and who have a history of DVT should discuss ways to reduce the risk of DVT and pulmonary embolus with their doctors.

70.   Are infections more common in patients with brain tumors?

Brain tumor patients are not necessarily more susceptible to infection as a result of the tumor; however, their treatment may place them at risk for certain kinds of infections. Many brain tumor patients are treated with steroids such as dexamethasone before and after surgery. A short course of steroids usually does not increase the risk of infection. However, long-term steroid use (over a period of weeks or months) is often associated with fungal infections, particularly oral thrush (candidiasis). Thrush appears as a white coating over the tongue and back of the throat, and although it may be painless, it can affect taste and appetite. Extensive candidiasis of the esophagus and genitourinary tract may be painful and require several days of oral antifungal therapy. 

Some chemotherapy drugs, especially when used in combination with steroids, increase the risk of infection. Temodar, a drug that usually is not associated with a low white blood cell count, affects the subset of white cells called lymphocytes that are important in preventing fungal infections and viruses. Serious lung infections, including Pneumocystis carinii, Aspergillus, and Nocardia, are rare in the normal population but are life-threatening in patients with low lymphocyte counts. Patients who have a history of herpes infections may also experience an increase in the number and severity of outbreaks.

Patients who develop a low neutrophil count (see Question 44) as a result of chemotherapy must take precautions to avoid infection and notify their doctors immediately for fever, chest congestion, or cough. Patients who have implanted intravenous catheters for administering chemotherapy are at risk for infection and should notify their doctor if they experience any tenderness around the catheter, fever, or chills. 

71.   Will my cancer treatments cause permanent infertility?

A number of different chemotherapy drugs can cause premature menopause, irregular menstrual periods, and infertility in women. Chemotherapy drugs can also cause infertility in men. Procarbazine, Temodar, cisplatin, and carboplatin have been associated with sterility. For some patients, the sterility is only temporary, and they recover fertility within a year after stopping treatment. However, permanent sterility is more common in men, and in women who are older than age 40 at the time of treatment.

Brain radiation can decrease or destroy the normal production of hormones that affect sexual development and reproduction. Men may benefit from testosterone injections to improve libido, decrease hot flashes, and prevent osteoporosis. Similarly, women who experience premature menopause after radiation therapy may benefit from low-dose estrogen and progesterone replacement therapy. Such therapy is usually prescribed to alleviate symptoms rather than to restore fertility.

Male patients who desire to father children following treatment may be able to bank sperm before starting therapy. For female patients, preservation and harvesting of eggs requires considerably more time and expense. The need to initiate therapy as soon as possible may not provide enough time to retrieve viable eggs.

Some patients with pituitary tumors, or tumors in areas near the pituitary, may have abnormal sex hormone production at diagnosis. Disrupted hormone production may cause ovarian or testicular failure, resulting in infertility. These patients therefore cannot benefit from fertility preservation strategies before chemotherapy.

72.   I've always been healthy, but now that I have a brain tumor I worry about every little symptom. What are the symptoms I should look for, and when should I call my doctor?

It's not always easy to know when to call your doctor, or even which doctor to call. Some problems can wait until your doctor can see you in the outpatient clinic, and some need immediate attention. At night or on the weekend, your doctor may direct you to the emergency room. Make sure you follow your doctor's recommendation.

If you've just had surgery, your neurosurgeon will want you to report any changes in your condition following your discharge from the hospital. If you experience infection in the surgical wound, fever higher than 100° F, sudden onset of headache, or increasing weakness, call your neurosurgeon. 

If you are seeing a neurologist for seizures, this doctor will manage your anticonvulsant medication and monitor any laboratory tests that might be required. Don't expect your other doctors to adjust your anticonvulsant medications. Your neurologist is expected to take charge in this area, and will make any medication adjustments.

Your radiation oncologist will typically see you at least once a week during your treatment. After therapy is completed, most radiation oncologists release you back to the care of your neurosurgeon, oncologist, or neurologist. If you develop a complication that requires admission to a hospital while you are receiving radiation therapy, let your radiation oncologist know. It may be possible to continue your treatment while hospitalized.

In many communities, a medical oncologist or neuro-oncologist assumes the care of a brain tumor patient after surgery. The medical oncologist or neuro-oncologist will work with the other specialists and your primary care doctor to arrange any laboratory tests or radiographic studies that you need. Although your primary care doctor may still treat other medical problems unrelated to the tumor (such as high blood pressure and diabetes) your oncologist will address the treatment of the brain tumor and any complications related to the tumor. Table 5 provides a list of what you need to bring to your oncologist's attention immediately.

Table 5       Problems to Report to Your Oncologist

On the other hand, there are situations for which you should not call your oncologist in the middle of the night. For example, a refill on your cholesterol medication, the results of an MRI scan taken earlier in the day, or a question about chemotherapy you received last month are not considered emergencies.  Keep in mind that your doctor (or the partner who may be on call for him or her) will not have access to your medical record after office hours.

Make sure you keep a card with all of your doctors' names and phone numbers available in your wallet or purse, in the event that another doctor needs to contact one of them regarding your care.