Have you or a family member ever discussed clinical trials – what they are and whether one may be right for you? Have you or a family member been treated for cancer and wondered if a clinical trial would have expanded your treatment options?
If so, you may not have gotten too far past the talking or thinking stage because you simply did not know enough about clinical trials to make a decision. Or, maybe you had very limited knowledge about clinical trials, but it was mostly based on “street talk” and “urban legend” whispers about what happens to people who take part in these medical studies – probably just enough information to frighten you away from taking action to learn more from reliable sources. Clinical trials, quite simply, are defined as research studies that involve people. Misinformation sometimes gives clinical trials a bad name.
Clearly, when making such personal choices about medical care, whether it is cancer or some other disease, you want to consume a lot of information and hold a vigorous discussion with your doctor to know what you are getting into. Not every procedure or test or pharmaceutical miracle drug is for everybody, but by the same token, if you do not take time to learn about the medical landscape, you may miss out on medical discoveries that could enhance your treatment and improve your chances of recovery.
Given the impact that cancer has on the African American community, it is so important to take the time to at least learn about cancer clinical trials and what benefits they may offer, even if you ultimately decide it is not for you or for your family member.
As with any aspect of cancer, from prevention to detection to treatment, the more you know the better you can make decisions – with your provider – about what course of action to take to fight cancer. This is one of the reasons that the National Cancer Institute (NCI) has created and packaged a set of educational materials to help you learn about clinical trials. These materials are easy to read and understand, accessible and answer many of the questions that might come to mind when you hear the term, “clinical trials,” or wonder what such an experience might encompass.
Clinical trials are a subject of great sensitivity. Hesitation about medical testing of any kind is understood, especially in minority communities long disappointed by violations of trust related to health care and cultural appropriateness in the delivery of health care.
Yet, it is critical when facing a disease as challenging as cancer that every patient know the full range of treatment options that may be available to them. With that said, you owe it to yourself and to any relative or friend you may be assisting after a cancer diagnosis to at least absorb the available information on clinical trials in case the provider mentions it or in case you want to take the initiative and get a professional opinion on whether a clinical trial would be a viable treatment option.
A good place to begin looking for information is on the Web at cancer.gov, the primary Web site for the NCI. Here, you can uncover a wealth of consumer-oriented information about clinical trials: what types of trials exist, how to access these trials, what happens during a clinical trial, what questions to ask, and what the benefits and risks are for clinical trials. Especially helpful is NCI’s Clinical Trials Education Series, which is a neatly packaged collection of resources designed to educate cancer patients, health care professionals, and the general public about cancer clinical trials. You can order a DVD with the information or download materials from (http://www.cancer.gov/clinicaltrials/learning/clinical-trials-education-series. Quite simply, you can learn at your pace and in the format that you find most comfortable.
Remember, when it comes to your health, knowing the facts and the options about treatment – not what trickles through the “urban legend” pipeline or what we know from hearsay –is critical. In the fight against cancer, clinical trials can offer hope and promise, but clinical trials are not for everyone and not every clinical trial is for everybody. The only way of knowing whether or not a clinical trial is right for you or a relative is to educate yourself and get the facts.
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