A brain tumor and the treatment necessary to deal with it will cause changes in the lives of those affected. Adjustment to these changes can be easier if everyone involved has some idea of what to expect and knows that there are resources to support them.

This diagnosis causes a host of reactions, among them shock, fear, and despair. It means a plunge into unfamiliar medical surroundings and a future full of uncertainties. It is an emotional time.

Perhaps it will help you to know that there is hope for those with a brain tumor:

Almost half of all brain tumors are non-cancerous and, if located favorably, can be cured by surgery. VHL brain tumors are non-cancerous. While they can recur, they can usually be dealt with successfully surgically. Techniques for dealing with brain tumors has changed markedly in the last few years, so the prior experience of a relative is no indication of what will happen in your case. Each year further progress in treating this disease is made by dedicated researchers.

The panic and anxiety you feel is a natural response, affecting not only you but those close to you as well. Changes in daily routines and responsibilities are often required. Adjustment to these changes can be easier if everyone involved understands what is happening and has some idea of what to expect. Understanding helps you feel more comfortable and more in control.

As you begin to deal with your situation, it may help if you realize that others have found that some of the most difficult periods of time (those causing the greatest emotional stress) are:

· From suspicion of illness until diagnosis

· Immediately after completion of treatment

· Having any repeat CT scan, or follow up doctor visit

In the article that follows, we provide some basic information about brain tumors and a few hints on how to deal with the changes you and your family are facing.

Understanding and Communication

The first step in coming to grips with the diagnosis of a brain tumor is to seek accurate, understandable medical information about this disease and its various treatment options. This information should be obtained from a physician experienced in treating brain tumors, and especially from a physician with experience in treating the hemangioblastomas found in VHL. Hemangioblastomas are rare, comprising only about 3% of all brain tumors, so experience with this kind of tumor is not widespread. The feelings of helplessness and lack of control that are so common following diagnosis often can be reduced if you actively participate in decisions regarding your care and treatment.

Once the diagnosis is made, it helps to share the news with those close to you. Whenever possible, you should be accompanied to the doctor by a family member, or friend. Having company actually serves two purposes: the second person can give you much needed moral support, and he or she can help you remember the information you are given. If often helps to take a small notebook along to write down the information and to keep a record of your visits and treatments.

If you are a parent, children should be given information in terms they can understand. Answer questions simply and honestly but offer no more information than is asked for. Children have remarkable insight, and they can be a source of joy and comfort. Sensing changes at home, children will often misinterpret or imagine incorrect causes if they are not told the truth. Children may benefit from being told that nothing they could have said, wished or done made it happen. Children often like to share in the experience of concern and helping the patient. Assigning simple tasks to them will make them feel more important and needed.

Patient education materials can provide a basis for discussion with the treating physicians by suggesting topics, important questions, and explaining medical terms. The ability to share your concerns with the physician is very important; you will probably have many questions which require frank, honest answers. The most commonly asked question, "What can we expect next?" is the most difficult to answer.

What Can We Expect?

The effects of a brain tumor are many and varied. Some of these effects may appear before the reason for them is known. Or the reason for them may never be known.

Some Effects are Emotional

You may experience several generalized symptoms. (Family members and close friends may also experience some of these problems.) These can be due to the emotional or physical stress caused by treatments, or surgery, or by the tumor itself. Lack of appetite, depression, irritability, fatigue, sleeplessness, an erratic memory, and restlessness are common complaints. Stress reduction strategies are usually helpful. Nausea, bladder problems, or constipation can also occur. Your doctor usually can help you deal with these problems.

Some Effects are due to Tumor

There is a limited amount of space inside the hard confines of the skull; therefore, the growth of anything that doesn't normally belong there causes changes in normal brain functions. These changes may be temporary or permanent, depending on the cause. As tumors grow, the pressure they exert may affect areas near or far from the tumor itself, causing a wide variety of symptoms.

The tumors which may occur in about half the people with VHL are usually found in the cerebellar area (posterior fossa), or brain stem.

Cerebellar-pontine tumors cause pressure on the cranial nerves. Ringing in the ears or hearing loss (especially in using the telephone) can occur. Other effects may include changes in balance or coordination.

Brain stem tumors can affect tongue movements and cause difficulty in swallowing or speaking. Unusual eye movements can cause dizziness or unsteadiness in walking.

Posterior fossa tumors (cerebellar tumors) may cause tremors or a lack of coordination in walking. Headaches and nausea also may occur.

Side Effects of Treatment

While headache is the most common discomfort associated with brain tumors, some distress may be caused by the procedures necessary to treat the tumor. Chemotherapy and radiation therapy are generally not effective in VHL; stereotactic radiation may be an appropriate therapy for some tumors, and has fewer side effects than conventional radiation therapy.

If you are experiencing more intense degrees of pain, medications can make these discomforts tolerable. There are pain management clinics in most major medical centers, and new techniques based on yoga and meditation for mentally managing some degrees of pain without drugs.

Swelling of the brain often occurs following surgery or radiation, and it may cause temporary difficulty in walking or thinking clearly. As the swelling decreases, these side effects should fade. Steroid medications, which are often prescribed to reduce the swelling, may cause a swollen appearance or hormonal disturbances. One of the "positive" side effects of steroid therapy can be temporary control of headaches.

About Recurrence

Some brain tumors tend to reoccur, either because they are in a surgically difficult area and cannot be removed in their entirety, or because tiny cells, too small to be seen even with an operating microscope, may remain following surgery or other treatment, or because VHL may cause additional tumors in the area. While the goal of treatment is to reduce the number of these "left behind" cells to an insignificant amount, this is not always possible. The first sign of recurrence is emotionally devastating. You may blame your doctor or yourself for choosing a particular treatment plan over another. The choice you made at the time was the correct one for you. No one is to blame — it just happens.

Conclusion

No matter what the eventual outcome, a brain tumor and the treatment necessary to deal with it will cause drastic changes in the lives of those affected. Friends, relatives, and even acquaintances will amaze you with their generosity. Priorities will change, and new relationships will begin.

This can be a very enriching time, a time for growth, a time for closeness, a time for sharing with others. You need not be alone.

For more information, contact Mrs. Moira Thomson, Secretary, 30 Woodburn Terrace, Edinburgh EH10, 4SS, Scotland, U.K. Tel: +44 (0)31 447-2476. There are similar brain tumor support organizations in many countries. In the U.S., contact American Brain Tumor Association (ABTA) 2720 River Road, Suite 146, Des Plaines, IL 60018. Tel: +1 (847) 827-9910 or +1 (800) 886-2282

As published in the VHL Family Forum, newsletter of the VHL Family Alliance, March 1997. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.