Cancer Support: Being an Active Patient

Topic Overview

Dealing with cancer can feel overwhelming. There's so much information to take in and so much to decide. It might seem easier to let your doctors make the decisions for you.

It's true that doctors are experts on medical care. But you are the expert on yourself and your life. That's why it's important to be an "active patient." That means you work together with your doctor to make decisions. When you're an active patient, you can be sure that your choices reflect your values and beliefs. And you're more likely to be happy with your care and to have better medical results.

How can you become an active patient?

There are many ways to become more active and involved in your care. Here are some ideas:

Ask questions. It may help to write down your questions before your doctor visit. Then you can be sure you'll find out what you need to know. If your doctor says something you don't understand, don't be afraid to ask him or her to say it again in a different way. You have a right to understand your condition and your options.

Bring a support person. It's a good idea to take a trusted friend or relative to every appointment. This person can take notes for you and help you remember later what your doctor said.

Help your doctor. Always try to answer your doctor's questions fully and truthfully. This will help your doctor better manage your care. Be sure to go to all your appointments, and take any medicines as prescribed. Keep your doctor informed about any changes in your health.

Use your whole team. Find out who else is on your treatment team and how they can help you. For example, a nurse practitioner may be more available to answer questions than your doctor. A social worker can help you with insurance issues or recommend a support group. And some hospitals have "patient navigators" who can help you get the care and services you need.

Be part of each decision. Your feelings and values are an important part of any decision, so share them with your doctor. You may also want to talk to loved ones who will be affected by your choices.

Make a 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 next steps you'll take. This can help you feel confident about your decision.

What questions do people ask?

It can be hard to think clearly at the doctor's office, especially when the subject is as serious and complex as cancer. So it's a good idea to write down the questions you want to ask and bring the list with you.

Here are some questions that people with cancer often ask. You may have other questions that are important to you.

• What are my treatment choices? Which do you think would be best for me?
• What are the most common side effects of each treatment? What are the risks?
• How long will treatment take? How much will it cost?
• What can I expect after treatment?
• Are there any lifestyle changes you'd advise me to make?
• Can this kind of cancer be inherited? Should I have genetic testing?
• Can you help me find a doctor to give me a second opinion?
• How can I get in touch with you if I have more questions?

How can you find reliable information?

Most people search the Internet for information about cancer. That can be confusing because some online information isn't true or isn't based on sound medical research. But there are ways to find good information.

Look for websites you can trust. A number of national organizations are in the business of helping people with cancer. The major ones include:

• American Cancer Society (ACS). The ACS has reliable information about many types of cancer, available in English, Spanish, and Chinese. Go to www.cancer.org, or call 1-800-227-2345.
• National Cancer Institute (NCI). This government agency provides up-to-date information about cancer and its prevention, detection, and treatment. You can also contact trained staff with questions. Spanish-speaking staff members are available. Go to www.cancer.gov, or call 1-800-422-6237.
• National Comprehensive Cancer Network (NCCN). This group publishes NCCN Guidelines for Patients on many common types of cancer. These easy-to-read resources can help you make informed choices about your care. Go to www.nccn.com, or call 215-690-0330.
• Patient Advocate Foundation. This nonprofit organization helps patients manage their medical, job, and financial issues. It offers information in Spanish as well as English. Go to www.patientadvocate.org, or call 1-800-532-5274.

Ask your doctors. They may have information for you, or they may be able to recommend good websites. And many hospitals have medical libraries that are open to the public.

What can you do about getting test results?

Waiting to hear about a result that could change your life may be one of the hardest things about cancer treatment.

Most doctors, labs, and hospitals are very busy, and you may not want to be a bother. But tests can provide information that's very important to your future.

Here are some tips for following up on tests:

• Find out when you can expect the results. Ask what number you can call to check on your results.
• If you don't get your results when you expect to, call the number you were given. If your results are not ready yet, ask when they will be, and call back then.
• When the results are ready, ask to have a printed copy sent to you.
• Meet with your doctor as soon as you can to discuss your results and what they mean for you.