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Dealing with cancer is hard enough without feeling like you have to make decisions, ask your doctor questions, and be part of your treatment team.
It may seem easier to just let your doctors handle everything.
But it's a fact that when you are an "active patient"—when you and your doctors make decisions together—you're more likely to be happier with your care and have better medical results.1
Get the facts. Ask questions. Learn all you can. If you don't understand something, ask your doctor to explain it again.
Bring a support person. Bring a trusted friend or relative to every appointment. This support person can ask questions you forgot to ask or help you remember later what your doctor said.
Take the lead. Go to all your appointments. Speak up for yourself. Make sure the medicine you get at the drugstore is the right one.
Ask lots of questions. At every stage of your testing, diagnosis, and treatment, ask your doctor if there is anything you may not be prepared for or aren't expecting. For example, you could ask, "What are the things about this (test, surgery, treatment) that patients wish they'd known about ahead of time?"
Use your whole team. Ask your doctor who else is on your treatment team and how they can be resources for you. For example, a nurse practitioner may be more available than your doctor when questions come up. Or your team may include a dietitian, a massage therapist, or a social worker.
Be part of each decision. Make your own feelings and values part of your decision. Talk to loved ones who will be affected by it. Make a list of pros and cons for each option. Share all this with your doctor.
Make an action plan. After you and your doctor have made a decision, find out what you can do to make sure that you will have the best possible outcome. Write down the steps that you need to take next. Think positively about your decision.
Even the smartest people in the world have trouble thinking clearly at the doctor's office, especially when the subject is as serious as cancer. That's why taking a trusted relative or friend with you is such a good idea. And it may help if you write down the questions you want to ask and bring the list with you.
Most people search the Internet for information about their cancer. That can be confusing, and some information isn't true or isn't reliable. But there are ways to find good information.
Look for websites you can trust. For example, the information you collect should be based on sound medical research, not the results of a single study or facts published by a company that will profit by your using its product. Ask your doctor to explain any information you have questions about.
Ask your doctors. They may have information you can borrow. Or they will know of websites that are reliable.
Contact national organizations. A number of national organizations are in the business of helping patients. The major organizations include:
Go to your local public library. Public libraries often have medical sections that contain books with general information about cancer. If you're not sure how to find what you need, ask a librarian to help you.
See if your local hospital has a medical library that is open to the public. Many are. They may even have some books and online resources that are written specifically for patients rather than doctors. You can ask a librarian to help you find books or articles.
Waiting to hear about a result that may change your life can be one of the worst things about cancer treatment.
While it may seem like your doctor isn't giving you good service, try to remember that most doctors, clinics, labs, and hospitals are very busy. That said, there's no reason why you have to sit by the phone and wait.
You can be an active patient without worrying that you're being rude. Here are some tips:
Agency for Healthcare Research and Quality (2011). Be More Involved in Your Health Care: Tips for Patients (AHRQ Publication No. 10-0094-A). Rockville, MD: Agency for Healthcare Research and Quality. Also available online: http://www.ahrq.gov/consumer/beinvolved.htm.
June 18, 2012
E. Gregory Thompson, MD - Internal Medicine & Catherine D. Serio, PhD - Behavioral Health
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