Having a brain tumor puts you at an increased risk of developing other problems
In previous chapters, we have described problems associated directly with having a brain tumor (seizures, personality change, memory loss, etc.) as well as potential problems produced by the treatment of a brain tumor (neurological deficits from surgery, hair loss from radiation therapy, low blood counts from chemotherapy, etc.). However, there are other problems that patients with brain tumors are at increased risk for. Nearly all of these are manageable, and the purpose of this chapter is to alert you to them so you will know to discuss them with your doctor early on—before they cause serious problems.
Blood clots: Simply having a brain tumor places you at a significantly higher risk of developing blood clots. These clots are called “deep venous thrombosis” (or DVTs for short) and occur in the veins of the legs. Symptoms of DVTs include calf pain, swelling, and discoloration of the legs, although DVTs can also occur without any symptoms. The danger of DVTs is that they can break off and be carried by the bloodstream to the lungs, where they cause “pulmonary thromboemboli” (or PTEs for short)—blood clots in the pulmonary arteries. PTEs can be deadly, and are a major cause of sudden death in hospitalized patients in general. The best way of treating PTEs is to prevent them from occurring in the first place. Hence, if you do develop pain, swelling, or discoloration of your legs, you need to contact your doctor as soon as possible. Your doctor may decide to perform a “Doppler ultrasound” which is a non-invasive test that can determine if you indeed have DVTs. If you do, there are two options to treat them. Some patients can be safely treated with blood thinners (“anticoagulants”) that eventually cause the blood clots to dissolve. These blood thinners can be given by vein (“intravenously”), by daily local injection (“subcutaneously”) and by mouth, and which choice of treatment is used is something your doctor should explain to you. However, not all patients with brain tumors can be safely treated with blood thinners, since these medications can cause bleeding into the brain tumor itself. In this situation, your doctor may instead decide to insert a special type of filter into the major vein in your abdomen, know as the “inferior vena cava.” This device, known as a “Greenfield filter” or “Inferior vena cava filter” keeps blood clots from reaching the lungs. A major problem with these filters is that they can cause permanent swelling in the legs. For this reason, it is generally preferred to use blood thinners for treating DVTs so long as they can be used safely.
Depression: It goes without saying that having a potentially life-threatening disease can shake your sense of security to the core. This is made even worse by all of the sudden changes in your routine that come hand-in-hand with being diagnosed with a brain tumor. You may have been working full-time one month only to find yourself recovering from surgery in the next month, going to daily radiation therapy treatments, dealing with side effects of chemotherapy, and seeing doctors far more often than you were used to doing. It is thus not surprising that most patients go through a period of reactive depression, which tends to get better once they adapt to the changes in lifestyle that their disease brings on. However, for some patients, the depression does not go away. Furthermore, several of the medications doctors use to treat brain tumor side effects, such as steroids, can make depression worse.
Depression can manifest itself in a variety of ways. We commonly think of tearfulness, sadness, and social withdrawal as signs of depression. Indeed, for many patients affected by this problem, it is obvious to everyone that depression is present. However, depression can also appear as irritability, anxiety, decreased sex drive (“libido”), sleep problems, and inappropriate social behavior. If you have a brain tumor and are experiencing any of these problems, be sure to talk to your doctor as soon as they become apparent. As with most things, depression is easier to treat early on. In the BTC clinic, we routinely have our patients meet with a social worker as soon as they are diagnosed, so that we can get an assessment of our patient’s level of social support. We do not hesitate to prescribe antidepressants and/or refer the patient to a psychiatrist when depression is suspected, and we find that depression in our patients responds well to these interventions.
Rash: Several of the medications that we prescribe for managing the symptoms of brain tumors can produce an allergic reaction. This is generally manifested by a rash that can develop over your arms, chest, abdomen, and back, and frequently itches. It is even possible to develop allergies to medications that you have taken for years under certain circumstances, such as radiation therapy. We know that patients undergoing radiation therapy can become allergic to medications that they had tolerated well before the radiation therapy. The most common medication to fall in this category is Dilantin, which is used to control seizures. This is why we generally want to switch patients who are about to undergo radiation therapy and are taking Dilantin to another anti-seizure medication.
We generally manage medication-related rashes by immediately stopping the likely offending medication(s) and prescribing anti-histamine and steroid medications. Most of these rashes typically resolve after several weeks. However, on rare occasions, the rash can become very severe, involve the entire body, and be associated with fever and with several laboratory abnormalities. In general, if you develop a rash while under treatment for your brain tumor, you should notify your doctor. If your rash is not getting any better despite adjusting your medication, or is associated with fever or a general “sick” feeling, call your doctor immediately in order to prevent more serious complications from developing.
Premature menopause/infertility: Both radiation therapy to the brain as well as chemotherapy can accelerate the onset of menopause. Likewise, chemotherapy can reduce sperm count and reduce male fertility as well. If you think that you may wish in the future to conceive, you may wish to bank your ova/sperm in a facility that specializes in this process.
Steroid-related complications: We use steroids for reducing the swelling (“edema”) in the brain that is associated with brain tumors. Steroids can be extremely effective in reducing swelling and improving symptoms and quality of life. However, their use can be associated with several side effects, most of which are readily reversed once the steroids are withdrawn. These side effects include the following:
a. Diabetes: Steroids make you relatively resistant to the effects of the insulin that your body makes, and this can raise your blood sugar, sometimes to very high levels. Your doctor will want to know if there is any history of diabetes in your family, which increases the risk that you may develop this “steroid-induced” diabetes. This condition is generally managed the same way that spontaneous diabetes is managed—i.e., with diet, oral medications, and sometimes, insulin injections. Frequently, reducing the steroid dosage to the minimum required dose will often reduce the severity of this side effect or eliminate it altogether.
b. Obesity and hypertension: Steroids are potent appetite-stimulants, and weight gain is common once you start taking them for this reason alone. The weight unfortunately is in the form of fat, which in addition to being deposited in the usual places (belly and buttocks), can also be deposited around your face and along the upper part of your back, giving you a characteristic “round” face appearance. Fortunately, as with the diabetes, this problem is reversible once the steroid dosage is reduced. Steroids also cause you to gain weight by inducing your body to retain salt. This can cause swelling in your ankles (different from and not to be confused with the swelling in your ankles that comes from a blood clot in your leg veins) and can raise your blood pressure (“hypertension”). As with diabetes, a prior history or family history of elevated blood pressure increases your risk of developing this problem. The hypertension associated with steroid use can be readily treated with medication, and will get better and possibly go away altogether once the steroids are withdrawn or their dose reduced. By inducing your body to retain salt, steroids can also increase the pressure in your eye, which can lead to a condition called “glaucoma.” As with hypertension, steroid-induced glaucoma is most common in people who have a family history of glaucoma or who have a history of borderline elevation of eye pressure. If either of these apply to you, you should have your eyes examined regularly by your ophthalmologist while you are taking steroids.
c. Pneumocystis pneumonia: Steroids reduce immunity, and they increase your risk of developing infections that occur in people whose immune system is suppressed (“opportunistic infections”). The most common of these (which is still very uncommon) is a type of pneumonia caused by the organism Pneumocystis carinii. This can be effectively prevented by taking regular doses of certain antibiotics. The most commonly used medication for this is Bactrim, which is a member of the sulfa group of antibiotics. Be sure to tell your doctor if you are allergic to sulfa, as there are other equally effective antibiotics that can also be used to prevent Pneumocystis pneumonia. As with the other steroid side effects, this one is reversible once the steroids are withdrawn.
d. Osteoporosis: Steroids suppress the maintenance of osteoid—the material that makes up bones—and can accelerate the thinning of bones that occurs with age (“osteoporosis”). If you have been on steroids for a prolonged period of time (longer than three months) you should discuss with your doctor whether a bone density test would be appropriate. If you are developing osteoporosis, this can be treated with available medications.
e. Muscle weakness: Prolonged use of steroids weakens the muscles of the shoulder joint and thigh, and can affect your ability to perform activities that use these muscle groups, including walking up stairs, running, brushing your teeth, and applying makeup. This effect is less pronounced with some steroids (e.g., prednisone) and more of a problem with others (e.g., Decadron). As with other steroid side effects, this one is also responsive to lowering the dose of steroid. In addition, if you are taking Decadron and are experiencing this type of weakness, you may wish to have your doctor switch you to an equivalent dose of prednisone (6 milligrams of prednisone is equivalent to 1 milligram of Decadron).
f. Mood and sleep changes: We have already noted above that depression can be worsened by steroids. Other mood disorders, including bipolar disorder (“manic depression”) and generalized anxiety disorder can also be worsened by the addition of steroids to your treatment. As with other steroid-induced problems, the risk of developing worsening depression, anxiety, or bipolar disorder are increased if you have a family history of any of these. Be sure to discuss any history of emotional or mood problems with your physician so that steps can be taken to minimize the risk of emotional/mood problems from developing. Steroids can also interfere with your ability to sleep. Changing the time you take your steroids in relation to when you go to bed, or prescribing sleep aids, can often reduce this side effect.