Your oncologist, nurses, and other members of your health care team work together to treat your multiple myeloma. Since medical appointments are the main time you will interact with your team, being as prepared as possible for these visits is important. It will help ensure that you understand your diagnosis and treatment, get answers to your questions, and feel more satisfied with your overall care.
Here are some ways to prepare for your medical appointments:
Communicate with your health care team. You are the best person to keep your doctors and nurses informed about how your treatment is affecting your daily activities, and about any other concerns you may have. After all, they can’t help you with a problem if you don’t make them aware of it.
You will need to make many important decisions about your care throughout your treatment. The best way to be ready to make these decisions is to communicate openly with your health care team and ask them to clarify anything you do not understand. If your doctors and nurses are unable to provide direct assistance with a concern, they will usually be able to refer you to someone else who can help.
Learn about your treatment options. There are many effective treatments for multiple myeloma, such as stem cell transplants, chemotherapy, and newer drugs like lenalidomide (Revlimid), thalidomide (Thalomid), and bortezomib (Velcade). Ask your health care team to recommend publications or websites that explain how these treatments work. The CancerCare fact sheet “Multiple Myeloma: Finding Resources and Support” also includes a list of reliable sites for medical information.
Write down your questions. This way, you won’t forget to ask about something that is important to you. Make the questions specific and brief, and prioritize them so that the most important questions get answered first. Be sure to take notes so that you can remember your doctor’s responses and instructions.
Try repeating the information back to your doctor if something is unclear. Or, if you prefer visual aids, ask to see X-rays, slides, or diagrams. You may also consider bringing someone else with you to your appointments. That person can serve as a valuable second set of ears. He or she may also be able to think of important questions to ask your doctor or help remember details you may have forgotten.
Ask your doctor if there is a better time to follow-up or another person that you can speak with if there is anything that you cannot resolve during your appointment.
Keep a treatment/side effect journal. Use it to record treatment dates, how your multiple myeloma is affecting you, and any side effects you may be experiencing. You can also use this journal to keep track of upcoming appointments and to write down the questions you would like to ask during visits. Don’t forget to take the journal with you to your appointments so you’ll have the information on hand to share with your doctor.
Get a second opinion. It is common and even encouraged for patients to request second opinions from a blood cancer specialist (known as a hematologist-oncologist). Many insurance carriers, including Medicare, cover this request. After getting a second opinion, you may decide to continue working with your previous oncologist. No matter what you decide, it’s likely you’ll feel more confident knowing you’re making the best decision for you. Ask your doctor to recommend a hematologist-oncologist, or visit the patient section of the American Society of Hematology’s website, www.hematology.org, to search for a specialist in your area.