ACS :: Making Informed Decisions

People with cancer often feel the sooner they get rid of the cancer, the better. They may feel they need to make decisions right away. They may be concerned that extra tests and appointments with other doctors will take time that could be spent treating the cancer.

So how long is too long? Cancers grow at different rates. Most cancers do not grow very quickly, so there is usually time to gather information about your cancer, talk with specialists, and make a decision about which treatment option is best for you. Talk with your health care team if you are concerned about not starting treatment right away.

Cheng, cancer survivor: "What was helpful for me was taking the time to step back and see the big picture. Getting information and the answers to my questions allowed me to make an informed decision. I lived up to my expectations and desires. I did things that made me feel comfortable, not what others thought I needed to do to be comfortable."

When looking for information about any type of cancer, first know what type of cancer you have. Talk with your health care team. Ask them for information about your specific type of cancer, including the cell type and the stage (extent) of your cancer. This is helpful because your cancer treatment will be designed for just you.

The stage of the cancer, as well as other factors, will help determine the goal of treatment. Most types of cancer treatment have 1 of these 3 goals: provide a cure, control the disease, or ease symptoms of the cancer and help make the patient comfortable. Sometimes the treatment goal changes after treatment has started. Talk with your doctor, and make sure you understand what your treatment options are, so you can make the best decisions for you and your family.

We live in an information-packed age. Cancer information can be complex and confusing. To find accurate and up-to-date information, use reliable sources, such as journals or Web sites from well-respected cancer centers, national cancer organizations, health professional organizations, and government agencies like the National Cancer Institute. (See the "Additional resources" section for some suggestions.) The information from Web sites, message boards, and online support groups can be very helpful, but it varies widely in quality and accuracy.

Look for information that has been reviewed by medical experts, is updated often, and states the purpose of the information. When you get information, discuss it with your health care team to find out if and how it applies to you. Remember, written information cannot take the place of medical advice from your doctor or cancer care team.

Learning all they can about you and your cancer is the first step your health care team will take. A biopsy and other lab tests, physical exams, and imaging tests will be done to figure out the stage (extent) of your cancer. Next your doctor uses all of this information to narrow down options and recommend treatment. Your doctor may talk with other doctors and health care professionals to help plan your treatment. You may also wish to get a second opinion at another treatment center. Getting a second opinion may help you feel more comfortable when deciding on your best treatment option.

Talking to doctors, nurses, and other members of the health care team is very important for people diagnosed with cancer. Your health care team can tell you where to look for information about your type of cancer and its treatment. They can answer your questions, give you support, and refer you to community resources. Allow yourself to take in information at your own pace. You decide when you are ready to talk, when you want to learn more about your cancer, and how much you want to learn.

Doctors and nurses are good sources of information when you have medical questions. Before appointments, write down any questions you may have about your type of cancer, treatment, side effects, and any limits on activity you might have during treatment. Other members of your health care team, such as pharmacists, dietitians, social workers, physical therapists, and radiation therapists are experts in different areas. Don't be afraid to ask them questions, too. Asking questions shows you want to learn and take an active role in your treatment. If the health care team member does not have time to answer all of your questions, ask when a good time would be to finish your conversation or ask about other ways to get the answers you need.

Judith, caregiver for her husband: No question is too small or too silly to ask. I never was afraid to call the doctor or staff with questions about anything...even questions about our bills and insurance. I found that our doctor and his staff were willing to answer any question. It was also very helpful to speak with our pharmacist. He made special arrangements when we needed to get prescriptions, especially pain medicine, filled after regular business hours.

People with cancer must know when they need to call the doctor. Ask which side effects or unusual signs need to be reported right away. Some things can wait until the next office visit, or until regular office hours when you can call and speak to a nurse. But if you are having severe or unexpected side effects, you need to know how to reach your doctor when the office is closed. Be sure you have this phone number and that your loved ones have it, too.

Family members may wish to speak with members of your health care team. This can help them answer questions and find support to deal with their feelings. Your health care team is bound by law to keep information about your health confidential. They will not discuss your health status with family members and friends unless you give your written permission for them to do so. Let your doctors and nurses know which family members and friends may be contacting them and with whom they can share information.

In an ideal world all health care professionals would be patient, understanding, have all the time in the world to answer questions, and know how to explain things to you so you could easily understand. But finding all of this in one person is rare. Still, it is important for you to trust your doctor and other members of the health care team. If you feel a lack of trust and open communication is keeping you from getting good medical care, ask for a referral to another doctor with whom you feel more comfortable. Also, don't be afraid to ask your doctor for a referral for a second opinion. You will need to be an active member of your health care team. As an active team member, you will need to do things like keep your scheduled appointments, take medicines as prescribed, and report side effects.

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