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Out of the Blue: A Guide for the New Patient
By: Virginia Stark-Vance, MD

Reprinted with permission.

"You have an abnormality on your MRI scan," your doctor begins. "It could be several things. It could be an infection, a blood clot, or a tumor. We need to find out. I'm going to refer you to a neurosurgeon."

Every day, fifty adults hear a variation of this statement and eventually are diagnosed with a brain tumor. Many more are diagnosed with a cancer which has spread to the brain from another cancer, such as lung cancer, melanoma, or breast cancer. After the shock subsides somewhat (it never really goes away), most patients have a thousand questions. The purpose of this discussion is to address the most common questions, particularly those that you're afraid to ask because you think your neurosurgeon will think you're stupid.

Why me?

Why not you? There are no known causes of brain tumors, except, of course, the tumors that spread to the brain from another cancer may have certain predisposing factors. For example, about 30% of lung cancer patients will develop a brain tumor microscopically identical to their lung cancer, and, as everyone knows, smoking increases the likelihood of developing lung cancer. Simply put, the only thing you can do to reduce your chance of developing a brain tumor is not to smoke.

Like most cancers, brain tumors are probably a result of mutations in normal cells that then grow abnormally. Very few brain tumors appear to be inherited or are known to be caused by exposure to something in the environment.

How does my doctor know that I have a tumor if I haven't had surgery?

Your doctor doesn't always know; MRI scans can be misleading. But MRI scans, along with a extensive review of your symptoms and medical history, can suggest not only the type of tumor but whether it originated in the brain (a primary brain tumor) or spread from another location (a metastatic brain tumor). Surgery, however, is the only definitive way to make the diagnosis of a brain tumor.

How long has this been there?

This question cannot be answered with certainty but an educated guess can be made if the exact type of tumor is known. Low grade glioma, a common, slow-growing tumor, can be present for years before symptoms develop. Fast growing tumors may have been present six months or less.

Can it be removed?

That's a question for a neurosurgeon, based on location and many other factors. There are a few tumors, lymphoma being the best example, that can be successfully treated even without surgical removal.

How do I choose a neurosurgeon?

In most cases, you may get some help in this from your personal physician. If not, this is not the time to check the yellow pages. Although most people associate brain surgery with neurosurgeons, there are many neurosurgeons who operate on fewer than five brain tumors a year - brain tumors being rather uncommon, compared with spinal problems such as herniated discs. Asking about their training and board certification is not particularly helpful; younger neurosurgeons may not have taken their board exams but may have recently completed a program with emphasis on new techniques in brain surgery.

Neurologists, oncologists, radiation oncologists, and radiologists are other physicians who work with neurosurgeons and may be able to recommend a neurosurgeon. Large hospitals usually have neuro intensive care units where brain tumor patients are taken after surgery and the nurses there will know all of the neurosurgeons who admit to their unit.

If you happen to end up in an emergency room and are seen by the neurosurgeon on call, you may not have much choice. But in a truly life threatening situation, any neurosurgeon on staff at a major hospital can be expected to react appropriately.

Should I get a second opinion?

That depends on why you're asking. Do you feel uncomfortable with your first doctor? If so, why? Is it poor communication, a perceived lack of experience, or simply that you feel that you shouldn't rush into surgery with someone you barely know?

Second opinions can be valuable if you have questions about the planned surgery or if you want to have the surgery at a specific hospital and your original surgeon isn't on staff there. It is important that you check with your insurance plan about the neurosurgeons who are covered; again, in an emergency you may not have much choice.

Will I be left permanently impaired after surgery?

Most people are terrified of the thought that they will have permanent disability after brain surgery. Fortunately, the degree of disability after surgery can in many cases be predicted based on the location of the tumor and the extent of surgery planned. Tests before and during surgery can help the neurosurgeon avoid damage to critical areas of the brain such as speech and motor function. Temporary impairment after surgery is fairly common but often improves with therapy.

Who is in charge of my treatment?

Good question! Some patients are seen by their neurosurgeon months or years after diagnosis and some are seen only if a second surgery is required. Many patients receive radiation therapy or chemotherapy, coordinated by an oncologist. Some patients are followed by a neurologist, particularly if seizures are a problem. Some patients rotate among the specialists, which can be time-consuming but ultimately may provide a true comprehensive plan of care.

The doctor taking charge of the post-operative treatment should be familiar with the diagnosis, the treatment alternatives, and the radiographic follow-up required. It is critical that the patient is able to communicate with the specialist and establish a routine for regular follow-up.

What's the difference between "remission" and "cure"?

Oncologists like to use the word "remission" when there is no definite evidence of cancer present. Remission implies an absence of new symptoms, and best describes a patient who has completed treatment and has "stable" follow up MRI scans. Remission can last for several months or years but some patients never achieve remission: there is no period of time that their MRI or their symptoms are improving or stable.

Cure, to most people, means that there will never be a relapse of the same tumor. Statistics for most cancers are presented as the percentage of patients with the disease alive five years after diagnosis. With many cancers, a survival of five years is considered very good, at least to the oncologist. "Incurable" is an ominous term, yet applies to hundreds of medical illnesses, including diabetes, rheumatoid arthritis, hypertension, and heart disease. It is important to remember that "incurable" does not mean "untreatable".

Should I pursue alternative therapy?

"Alternative therapy" has become a catch-all term for any therapy that deviates from the conventional standard of care. "Alternative therapy" can include faith healing, vitamin or nutritional supplements, herbal medicines, and many other treatments. Many physicians discourage their patients from seeking alternative therapies because they may be expensive or time-consuming but not have proven benefit.

Scientific proof of the effectiveness of a cancer treatment involves rigorous testing in a clinical trial. Ideally, a randomized trial comparing the "alternative" therapy to "standard" therapy must demonstrate a survival or quality of life benefit of the alternative therapy. Such trials are expensive and difficult to conduct. Patients and their physicians often have a bias toward one treatment or the other and choose not to be randomized. Less rigorous "Phase II" testing, which involves the very structured dosing in a large number of patients with similar characteristics, has also not been completed for many alternative therapies.

It is important to talk with your physician about any medication or plan of treatment that you're considering. Also, if you're planning to present your physician with articles or books about alternative therapy, it is helpful to scan the material for clinical studies that have been done. Your physician is much more likely to be receptive if the treatment has been well studied for effectiveness and safety.

How long do I have to live?

This is difficult to answer for any patient, as different types of tumors have different "natural histories", or the expected course of the disease, with or without treatment. Not all brain tumor patients die of the tumor; many die of complications of the tumor, such as blood clots or pneumonia. These complications can be unpredictable and follow otherwise successful surgery.

There are multiple factors that affect survival and the quality of life, including age, absence of other health problems, resectability of the tumor, the type of tumor and its rate of growth, the response to treatment, and access to health care. However, many of these factors are beyond the control of the patient and his or her physician.

If your doctor avoids giving specifics, he or she may be concerned that you will "doctor-shop" until you find someone who can give you the answer you want to hear. On the other hand, every specialist has seen a spectrum of fortunate and unfortunate patients who lived much longer or much shorter than expected. It is important to let your doctor know whether you want to be treated as aggressively as possible or that you wish to be treated more conservatively, avoiding the potential side effects of treatment.

Last Updated: 10/1/2003

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