Multiple Myeloma: Making the Most of Your Medical Appointments

Your doctors, nurses and social workers work as a team to treat your multiple myeloma. They do their best to ease your concerns and keep you informed. You should not feel you are bothering them with too many questions, or feel embarrassed if you do not understand their instructions. Many people see their cancer care as a collaboration. As such, it is important to be clear with your health care team and ask them any questions you have during your appointments, as good communication will improve the quality of your care.

Here are some ways to improve communication with your health care team:

Remember that you are a key member of your health care team. Remember that you are a key member of your health care team. Your health care team includes your doctors, nurses and social workers. As a patient, it is important to remember that you are also a health care consumer. The best way to begin making decisions about health care is to be informed.

Do your research. There are many treatments for multiple myeloma such as lenalidomide (Revlimid), thalidomide (Thalomid), bortezomib (Velcade), and stem cell transplantation. Ask your health care team to recommend publications that explain how these treatments work. You can also find information about these treatments on the websites of organizations such as those listed in the sidebar.

Get a second opinion. Many patients feel better informed after getting a second opinion from a specialist in multiple myeloma, known as a hematologistoncologist. This is common, and covered by many insurance carriers including Medicare. Oftentimes, patients continue treatment with their primary oncologist feeling better informed and more like a partner in their care. Ask your doctor to recommend a hematologist-oncologist in your area, or visit www.hematology.org to search for a specialist.

Prepare a list of questions. This way, you won’t forget to ask your doctor about something that was important to you. Prioritize your questions so that your most important ones get answered first. Also, taking notes will help you remember your doctor’s responses and instructions, and allow you to go over the information later.

Keep a treatment journal. Keeping a journal gives you a record of when you receive treatment, appointment times and locations, how multiple myeloma is affecting you, any side effects you are experiencing, and your daily activities. This is also a great way to have questions ready for when you meet with your doctor.

Bring someone with you to your appointment. It is always helpful to have support, and the person can serve as a second set of ears. He or she may also be able to think of questions to ask your doctor and help remember details you may have forgotten.

Make your questions specific and brief. If there is something you can’t understand or resolve, ask your doctor if there is another time you can discuss it in more detail. Most oncologists work in teams that include a nurse and social worker. It is helpful to build a relationship with one of them so in the event the doctor is too busy you can turn to one of them with your questions.

Make sure you understand your doctor. If something is unclear, try repeating it back to your doctor. You might start with the words “So you mean I should…” If you understand better with visual aids, ask to see the X-rays or slides, or ask your doctor to draw a diagram. If possible, tape-record your visit. Taping your conversation gives you a chance to hear specific information again or share it with family members or friends.

Speak what you’re feeling. Don’t be afraid to bring up any topic or concern to your health care team. Your doctor and oncology team can’t treat a problem if you don’t make them aware of it.

From the December 01, 2011 Issue of Oncology Nurse Advisor