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What is a clinical trial? How do I get into one?
• A clinical trial is a scientific study of a new method of treatment that research doctors believe has a good chance to be more effective than old methods. If you’re considering entering a clinical trial, be sure you understand the risks and potential benefits of the treatment. Also consider how you’ll pay for it—some clinical trials are free for participants; others aren’t.
Many hospitals have health educators who can help you research existing clinical trials. You can also search on your own at Cancer.gov/clinicaltrials (for cancer-specific trials) or ClinicalTrials.gov.
What questions should I ask my doctor after diagnosis?
• Your doctor may cover most of your would-be questions without your asking, but there are a few things you should be sure don’t get lost in the shuffle. Here is a list of questions for your doctor:
1. How much experience do you have treating this disease?
If the answer doesn’t reassure you, consider having another doctor manage your treatment.
2. What are the possible courses of treatment and their side effects?
Make sure the answer covers long-term side effects—for example, heart health, mobility, fertility. Sometimes there may be more than one recommended treatment for your condition, allowing you to weigh the differing side effects.
3. What tests will I be getting?
4. If you are scheduled for surgery, consider asking your surgeon: How many of these particular procedures have you done? Does that put you in a high percentile of experience? Do you have fellows in residence who will be in the operating room? If so, who will actually perform my surgery?
5. Will I be able to work while I am being treated?
6. If you are emotionally prepared to deal with the answer, ask, What’s my prognosis? If you are not ready, the question can certainly wait.
How am I going to remember the answers to all these questions?
• If you have a person who would be willing to accompany you on all your appointments, take him or her along. Prime your companion with the questions you want to ask your doctor, so there is a better chance you won’t forget. Have the companion take notes. Or use a tape recorder (but if you do, let your doctor know you are taping).
Keep organized. Have a notebook or folder for keeping your medical papers. Write down questions and answers from your doctor. Track the medications you are taking. Keep your lab results there. The cancer-support organization Gilda’s Club distributes books with preprinted places for these categories, as well as resource lists and bits of advice. The American Cancer Society’s patient navigators distribute a similar book.
What are some good resources for learning about my disease?
• For common diseases, nonprofit health organizations typically run Web sites that provide thorough explanations of symptoms, treatments, and side effects—for example, the Lupus Foundation of America (lupus.org) and the American Diabetes Association (diabetes.org). Specific hospitals or hospital networks such as the National Comprehensive Cancer Network (nccn.org) also keep informative Web sites.
The National Institutes of Health (nih.gov) and its sister organization MedlinePlus (medlineplus.gov) have Web-based search tools that can link you with vast details on your illness. WebMD (webmd.com) is a storehouse of readable, searchable information on all kinds of medical problems. Try to keep some perspective—because of WebMD’s ease of use and the search-ability of symptoms, “it’s a hypochondriac’s dream,” says Jeanette Albarrán, the Latino program coordinator at Gilda’s Club Chicago.
Your doctor or nurse should be able to point you to other useful resources. Hospitals also distribute disease-specific informational pamphlets from information desks or centers that are often staffed by knowledgeable people.
illustrations: Harry Campbell
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