NCCN Guidelines for Patients® | Chronic Lymphocytic Leukemia

54 NCCN Guidelines for Patients ® : Chronic Lymphocytic Leukemia, 2018 5 Making treatment decisions It’s your choice | Questions to ask Having cancer is very stressful. While absorbing the fact that you have cancer, you have to learn about tests and treatments. In addition, the time you have to accept a treatment plan feels short. Parts 1 through 4 described the cancer and the test and treatment options recommended by NCCN experts. These options are based on science and agreement among NCCN experts. Part 5 aims to help you make decisions that are in line with your beliefs, wishes, and values. It’s your choice The role patients want in choosing their treatment differs. You may feel uneasy about making treatment decisions. This may be due to a high level of stress. It may be hard to hear or know what others are saying. Stress, pain, and drugs can limit your ability to make good decisions. You may feel uneasy because you don’t know much about cancer. You’ve never heard the words used to describe cancer, tests, or treatments. Likewise, you may think that your judgment isn’t any better than your doctors’. Letting others decide which option is best may make you feel more at ease. However, whom do you want to make the decisions? You may rely on your doctors alone to make the right decisions. However, your doctors may not tell you which to choose if you have multiple good options. You can also have loved ones help. They can gather information, speak on your behalf, and share in decision-making with your doctors. Even if others decide which treatment you will receive, your treatment team may still ask that you sign a consent form. On the other hand, you may want to take the lead or share in decision-making. In shared decision-making, you and your doctors share information, discuss the options, and agree on a treatment plan. Your doctors know the science behind your plan but you know your concerns and goals. By working together, you can decide on a plan that works best for you when it comes to your personal and health needs. Questions to ask your doctors You will likely meet with experts from different fields of medicine. It is helpful to talk with each person. Prepare questions before your visit and ask questions if the information isn’t clear. You can get copies of your medical records. It may be helpful to have a family member or friend with you at these visits to listen carefully and even take notes. A patient advocate or navigator might also be able to come. They can help you ask questions and remember what was said. The questions below are suggestions for information you read about in this book. Feel free to use these questions or come up with your own personal questions to ask your doctor and other members of your treatment team.