Cancer Support: Being an Active Patient

Overview

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. When you're actively involved in decisions about your care, you can be sure that your choices reflect your values and beliefs.

Here are some ways to become more active and involved in your care.

• 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 them to say it again in a different way. You have a right to understand your condition and your options.

• Bring a support person.

  It can be 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.
  • 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 other people 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?

Here are some questions that people with cancer often ask. You may have other questions that are important to you. It's a good idea to write down the questions you want to ask and take them to your doctor visits. And it can help to have a friend or family member there to listen, take notes, and support you.

Questions about cancer.

• What do I need to know about my cancer?
• Can this kind of cancer be inherited? Should I have genetic testing?
• Where can I get more information about my type of cancer?

Questions about treatment.

• 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?
• How soon do I need to make a decision about treatment?
• What can I expect after treatment?

Other questions.

• Are there any lifestyle changes you'd advise me to make?
• 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 do you find trustworthy 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 trustworthy information.

Ask your doctors

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

Look for websites you can trust

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

The 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. Visit the website www.cancer.gov to contact the NCI.

The 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. Visit the website www.nccn.com for information about NCCN.

What can you do to get your test results?

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

Most doctors, labs, and hospitals are busy, and you may not want to bother them. But medical tests can provide information that's important to your future. And you have a right to know your results.

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 ready, and call back at that time.
• 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.