You may not know as much about cancer and its treatment as your doctor does, but you and your family are the only ones who can decide what is best for you. As part of your team, remember that you have a part to play in your care.
1. Don’t be afraid to ask questions. Many doctors want you to ask questions. You may not know which questions to ask. It is often easy to forget questions you (or your family) may have, so you may want to write your questions down before you go into the doctor’s office. It is also hard to remember everything you’re being told at each doctor’s visit. Be sure you or your family member writes down what your doctor tells you. You may want to record the conversation. Just make sure to ask your doctor if it is OK to do so.
2. Ask for reliable books, Internet sites, pictures, diagrams, or other visual aids. Ask your doctor to show you where your cancer is in your body, what will be removed, what will remain, and how the treatment will work. Being able to picture your cancer and how treatment will affect it can be a powerful aid as you make decisions.
3. Make sure you get the answers you need. Cancer is a complicated disease, and different people have different ways of understanding what is happening to them. Don’t be shy to say, “I don’t understand. Would you please explain it to me again?” Or, if needed, don’t be afraid to call back and ask to speak with your doctor or nurse again.
4. Don’t withhold information. Don’t tell your doctor or nurse that you’re just fine when you’re not. Your doctor and nurse need to know about new symptoms and changes in how you feel. Tell them if you’re having pain. Share with them if you’re using any other treatments along with your doctor-prescribed cancer treatment. Keep in mind that some alternative treatments like nutritional therapies interfere with standard cancer treatments. Giving your health providers a truthful picture of what complimentary therapies you are using, or thinking of using, will help ensure that your cancer treatments will be safe. All this information is important and will help your team manage your treatment program in the best way possible.
5. Take a partner with you to your appointments and treatment. Your spouse, a significant other, a relative, a friend, or an adult child can be helpful during these visits. Your partner can be a valuable set of ears and may even ask questions you did not think of or didn’t remember. Talk before the visit to work together as a team to make sure you know what questions or problems you want to talk about. Your partner can be your advocate, asking the tough questions that you’re not comfortable with. Having a partner with you is especially important if you’re on medication or if you’re anxious or upset. You may be asked to sign a medical release form granting your family member or friend the right to talk about your treatment or other concerns with your medical team. That is done to protect your privacy. Talk with your partner right after the visit about the information you received. While it is fresh, review the information to make sure you both heard and understood the same things. Take notes and write down other questions you may have. You can also use a tape recorder, but make sure to ask the doctor if it is OK to record your conversations.
6. Avoid the urge to get upset with the messenger. There is often no good way to give someone bad news. It is important to keep in mind that your doctor and nurse are doing everything they can to help you get well.
7. Make sure all your doctors talk with each other. Often, you will have more than one doctor, and each one should know what is happening to you. Make a list of all your doctors’ names, specialties, phone numbers, and addresses. Give this information to each person on your list. This will make it easier for them to consult each other, share reports and medical records, and talk about important issues regarding your care. You may have to sign medical releases giving them permission to share information and discuss your case with each other. This is done to protect your privacy. When you visit one doctor, ask if he or she has talked with your other doctors or gotten their reports.
8. Don’t be afraid to talk with your doctor about any problems or concerns. Your relationship with your doctor is an important one. As with all relationships in life, difficulties may arise, and talking about them can help. Be clear and precise in stating your concerns and give examples. Listen to your doctor’s response and try to understand his or her perspective. Offer ways on how to avoid these problems in the future. Your nurse can also help you strengthen your relationship with your doctor. If you remain unhappy with your relationship, you may decide to explore other options, such as switching doctors. If this happens, respectfully inform your doctor of your decision and the reasons, and ask for his or her help in transferring your care to your new doctor. Your primary care doctor can help you with this as well.
Taking an active role in your care will help you get the information you need and ensure that everyone is working with you to fight your cancer. Not everyone is comfortable doing this. For some, it takes time to learn how to be an active team member. You may be surprised at how good you and your partner will get at this over time.
Caregiver’s tip: Be an advocate for your loved one. Informed patients and families often have better outcomes.