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Making Treatment Choices
As someone new to the world of brain tumors, the drug names are probably meaningless, radiation doesn’t sound very “new,” and on top of it, you’re not really sure what a glioblastoma is anyway - or how to spell it. And now, you’re being asked to make a decision you don’t feel competent to make.
No one would blame you if your most immediate reaction was “no, thank you.” Today, patients and their families are playing a growing role in choosing their own treatment plans. As patients become more knowledgeable, physicians are increasingly providing choices in treatment. But choices can be overwhelming.
However, having options is good. Research progress has been made; there ARE choices. Treatment options are available, and different physicians may offer different options. On the other hand, making a choice if you feel overwhelmed or uninformed is challenging.
What can a family do? Here are a few suggestions to help ease you along the decision-making pathway.
Ask the doctor how long you have to make the decision.
Do you have time to gather information from other sources, or is a decision urgent? If a decision is needed quickly, ask the doctor to explain the choices in language the patient and you can both understand. Ask about the risks and benefits of each choice. Find out if either choice would preclude your family member from receiving other follow-up treatments. Is there time for a second opinion?
In an urgent situation, the doctor becomes your navigator. Listen carefully, and make the best decision you can with the information available to you at that time. If you have a few days in which to make the decision, move to the next suggestions.
Learn the basics.
The brain tumor world has its own vocabulary. Luckily, there are several ways to familiarize yourself quickly with these words and their definitions. This quick education will help you ask better questions and assist you in making educated choices.
We offer three online publications to get you started. Living with a Brain Tumor: A Guide for Newly Diagnosed Families, A Primer of Brain Tumors; and a Dictionary for Brain Tumor Patients. Living can be read in an hour or two. It offers sample questions, outlines the steps for obtaining a second opinion, explains common symptoms, and offers support resources. In the Primer, the Brain Tumor Basics, Diagnosis and Followup, and Types of Brain Tumors chapters will familiarize you with the most important words and terms of this new language. The Dictionary focuses on the words and terms unique to brain tumors. Prefer hard copies? Call us at 800-886-2282 and we’ll mail these books to you.
Next, visit the Treating Brain Tumors section of our web site. The National Institutes of Neurological Disorders and Stroke (800-352-9424) and the Cancer Information Service of the National Cancer Institute (800-422-6237) also provide information about brain tumors and their treatment.
Standard treatment versus a clinical trial
For most brain tumor patients, treatment begins with surgical removal of as much tumor as possible without causing undue harm. The removed tumor tissue is sent to a pathologist, who determines the “type” of brain tumor. Treatment depends on the tumor “type.” (There are over 125+ different types of brain tumors.) Once the type of tumor is known and the treatment choices are outlined, ask if each treatment is a “standard therapy” or a “clinical trial.”
Standard therapies are those that have completed the testing process, received approval from the FDA, and have been accepted as a “standard” amongst doctors who routinely treat brain tumors. Doctors know what to expect from a standard therapy. The treatment’s effectiveness is fairly well known, and the most common side effects have been determined.
What can you find out about a standard therapy? Your doctor can tell you what to expect from your treatment plan – the goal of the treatment and the expected outcome, the common side effects, the benefits and risks, and the expected quality of life during the treatment.
Clinical trials are treatment studies. These therapies are still being developed and tested. However, clinical trials offer patients the opportunity to receive new treatments that may not otherwise be available to them. Clinical trials are conducted in “phases.” Phase I trials are safety studies designed to learn the best dose and the best way to give the drug. Phase II trials study whether the new treatment is effective against the specific type of brain tumor in which it is being tested. Phase III trials compare the new treatment against a standard treatment to see which is more effective.
What can you find out about a treatment offered in a clinical trial? Ask the doctor or the clinical research associate for a copy of the “complete protocol.” This is the “step-by-step recipe” for testing the new treatment. It is also the document provided to the National Cancer Institute or the Food and Drug Administration when permission was requested to conduct the trial. The complete protocol explains why the treatment may be helpful, what is already known about the treatment (including earlier testing results and noted side effects), how the testing will be conducted, and the type of follow-up care that will be done as part of the trial.
Ask the Patient
Now that your family has learned the basics about brain tumors, a second opinion may have been obtained, and you understand the difference in the treatment options, you’re almost ready to make a decision. Or are you? Did anyone ask the patient about his/her preferences?
Assuming the role of information seeker makes it only too easy to make the process, and the decision, “your own.” Take the time to share what you’ve learned with the person who has the tumor. Give the patient an opportunity to ask his own questions and express his own concerns. Sometimes a patient and caregiver come to very different decisions; it’s important to recognize and respect that difference. A close friend, a further-removed family member, or the hospital social worker can be helpful in leading the family toward a unified decision. Unless there is a legal document stating otherwise, the final treatment choice lies with the patient who has the tumor. Support that decision, and continue to be an educated caregiver.
Our triannual newsletter, and our monthly e-bulletins, can help keep you informed. Click here to sign up for these free brain tumor updates.
We hope these suggestions help you better navigate the world of brain tumors, and assist your family in making treatment choices. The American Brain Tumor Association offers over 40 free booklets and resources to help you understand the options your physician outlines; most are available at this web site, or you can call us at 800-886-2282.
Or, visit other sections of the ABTA web site:
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Phone: 847-827-9910
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E-mail: info@abta.org