Charting Your Course : Seminar I - Taking Your Bearings : How To Get Treatment Information

Clinical Trials

A clinical trial is a research study conducted with patients, usually to evaluate a new treatment. Clinical trials help us find out if a promising new treatment is safe and effective for patients. Patients in a clinical trial are among the first to receive new research treatments before they are widely available. Some clinical trials represent the only therapeutic option for patients who have not responded to other treatments or for whom no other therapies exist.
There are many reasons patients take part in clinical trials. They may be hoping that the treatment may cure their disease, or extend their life, or contribute to a research effort to help others. Although there is always the chance that a new treatment will be disappointing, researchers involved in the study have reason to believe that the treatment will be as good as or better than current treatments.
Clinical trials involve risks. There may be side effects and other health risks depending on the type of treatment. Before entering a clinical trial, your doctor will tell you what side effects you should expect. It's important to keep in mind that standard treatments also cause side effects and risks.
Studies enroll only patients who fit certain criteria or guidelines. Your eligibility will depend on what research questions the study is trying to answer. This will depend on your type and stage of cancer and your health status.
What you should know about clinical trials before deciding to enter one:

What is the purpose of this study?
What does the study involve?
What kinds of tests and treatments are involved and how are they done?
What are the other choices, and their advantages and disadvantages?
Are there other standard treatments for my case and how does this study compare with them?
How will the study affect my daily life?
What side effects and risks will I have?
How long will the study last?
Will I have to be hospitalized? If so, how often and for how long?
Will I have any costs? Will any of my treatment be free?
If I am harmed as a result of the research, what treatment would I be entitled to?
What type of long-term follow-up care is part of the study?

If you wish to participate in a clinical trial, first talk with your doctor and get the opinion of cancer specialists. An information system called PDQ, cancernet.nci.nih.gov is supported by NCI and it can give your doctor the latest information about what clinical trials are being offered around the country for different types and stages of cancer. Or you can call the Cancer Information Service (1-800-4-CANCER) to request a search yourself. Information is available in both English and Spanish. Information on clinical trials is available also at www.cancer-trials.nci.nih.gov
Participation in a clinical trial is voluntary. Before you begin, you will be asked to sign an "informed consent" stating that the research, its risks, and its potential benefits have been explained to you, and that all your questions have been answered.
You are free to leave a study at any time. Leaving a clinical trial will not be held against you by your health care team.

Unproven Methods

Some persons who are offered no hope through established medical treatment turn to unproven methods of curing cancer. The term "unproven" means that they haven't been scientifically proven to be effective against cancer. There have been any unproven methods proclaimed as cancer cures. If you consider an unproven method, it will be tempting to accept everything you read as truth because you want to be cured. But just as when using established medical treatment, remember that as a consumer you have the right to try to evaluate objectively any unproven method. Some unproven methods, while not effective in treating cancer, aren't harmful, and in fact my be beneficial in terms of giving you a sense of control over your disease, or a better outlook.
Other unproven methods may actually be dangerous.
There's a distinction between unproven methods that claim to cure cancer and certain programs intended to improve your quality of life. Some dietary regimens can improve your body's ability to cope with cancer treatment. Some other programs such as imagery, self-hypnosis, and biofeedback may also help improve your quality of life. However none of these techniques has been proven to cure cancer. In the case of purported "revolutionary" nutritional approaches, ask a registered dietician to give you an opinion on their soundness.
In considering a unproven method, ask yourself the following questions:

The key question for any therapy, proven or not, is the same: has this method been shown through objective evidence to be potentially beneficial for the condition I have?
What is the treatment supposed to accomplish?
Has the method been reviewed in reputable medical journals? If so, what did the reviews say? If the method hasn't been reviewed in any recognized journal, why not?
What are the credentials of the discoverer or proponent of this treatment? Many unproven methods are proclaimed by individuals with unrecognized degrees such as N.D. (Doctor of Naturopathy), Ph.N. (Philosopher of Naturopathy), DABBA (Diplomate of the American Board of Bio-Analysts), and Ms.D. (Doctor of Metaphysics).
Will the individual giving the treatment be willing to work in partnership with my medical doctor?
Does it sound too good to be true?
Does my doctor believe that this method could actually be harmful?

Second Opinions

Excellent current information on second opinions can be found at www.carecounsel.com.

Questions to Ask

The Robert Wood Johnson Foundation's Last Acts website www.lastacts.org has the best questions to ask if you or a loved one have cancer.

Definitions

Cancer Words
Managed Care Words

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This content is derived from the "Charting Your Course Seminars: A Whole Person Approach To Living With Cancer", provided by Norris Cotton Cancer Center.