Questions to Ask Your Doctor

This content has been reviewed and approved by

Hagop M. Kantarjian, MD
Chairman & Professor, Leukemia Department
MD Anderson Cancer Center
University of Texas

If you have been recently diagnosed with chronic lymphocytic leukemia (CLL), you probably have many thoughts running through your head and you may feel unable to think clearly. However, it is important for you to ask questions about any concerns you have and to ask for definitions of words you don't understand. Be sure to take a pen and pad with you, as you probably won't remember all the answers. If the doctor uses words you don't understand, ask for an explanation.

You have the right to have your concerns answered. If your doctor does not have time to give you all the information you need, the nursing staff in his office may be able to answer your questions. You may also want to ask if there is any patient literature available.

If possible, bring a spouse, friend, or relative with you. They can take notes from your conversation with the doctor. You may even want to tape record your discussion so you can replay the answers to your questions at a later time. Of course, you must first ask your doctor's permission to do this.

Here is a list of questions you may want to ask. These are only suggestions; you should feel free to replace any or all with questions of your own.

• What type of leukemia do I have?
  
• How far advanced is my leukemia? This question is important in CLL to decide whether you need to be treated, and if so, what kind of treatment do you need.
  
• Do you know how quickly it is likely to progress?
  
• Can I enroll in a clinical trial? How would this affect the quality of my treatment?
  
• What is the recommended treatment for my stage of leukemia?
  
• If I don't have insurance coverage, what are my options?
  
• Which center would be able to provide the best treatment for my leukemia?
  
• I am afraid to have a bone marrow transplant. Are there any other options?
  
• When should I start treatment?
  
• If I have this treatment, what are my chances of survival?
  
• If I have treatment, will my leukemia return? If the leukemia comes back, can it be treated successfully again?
  
• What other tests are you recommending?
  
• What extra information do you get from each of these tests?
  
• How soon I do get the results of these tests?
  
• Could you please describe what each of these tests involves and tell me how to prepare for them?
  
• Are there any lifestyle changes I can make to improve my prognosis?
  
• Why do I need more treatment after I achieve remission?

For Chemotherapy

• What are the names of the drugs that will be used?
  
• Why are you recommending those particular drugs? Is there evidence that they are more effective than other chemotherapy drugs?
  
• How many treatments will I need? How will the treatments be given? Can I go home afterwards?
  
• What will I feel like after my treatments? Will I be able to work? Take care of my children?
  
• What are the possible side effects of these treatments? Will my hair fall out? Will I be nauseous? Will I be exhausted? Will I get mouth sores?
  
• Is there anything I can do to lessen the side effects?
  
• If I am taking chemotherapy, can I eat all kinds of foods? Can I drink alcohol?
  
• Can the leukemia spread even though I am on chemotherapy?
  
• Will chemotherapy affect my sex life? My sex drive?
  
• (For women) Will chemotherapy affect my chances of getting pregnant and having a normal baby?
  
• (For men) Will chemotherapy affect my chances of fathering a child?

For Radiation

Radiation is used rarely to reduce bulky disease, such as lymph nodes pressing on important organs or a large spleen that can cause pain and is not responding to treatment. Radiation may also be part of a preparative regimen for transplant.

• What areas of my body will be irradiated?
  
• How many treatments will I have?
  
• How will I feel after the treatments? Will I be able to work? Take care of my children?      
  
• What are the side effects of radiation? Is there anything I can do to lessen the side effects?
  
• Can I eat anything I want during the weeks I have radiation? What about alcohol?
  
• Will this affect my sex life? My sex drive?
  
• (For women) Will chemotherapy affect my chances of getting pregnant and having a normal baby?
  
• (For men) Will chemotherapy affect my chances of fathering a child?

For Transplant

This is usually offered only in patients who have not responded to chemotherapy ± monoclonal antibodies.

• How many days will I be in the hospital for my transplant?
  
• What are the side effects from the transplant?
  
• How soon will I feel physically normal?
  
• When will I know if my transplant was successful?
  
• What will my donor have to go through?

For Splenectomy

Splenectomy (removing the spleen surgically) is recommended only if the spleen is very large, causing problems, and not responding to other therapies.

• How will you remove the spleen?
  
• Do I need to receive a pneumococcal vaccine before hand?
  
• What is the use of the spleen in the body?
  
• What are the risks of taking the spleen out (infections, bleeding, death, hospital stay, later infections)?

During Treatment and at Follow-Up Visits

• How can I tell if the leukemia is coming back? Are there any danger signs to look for?
  
• How often do you want to see me after my treatments are finished?
  
• What tests will you give me at each visit after my treatments are finished? What information will you get from those tests?
  
• How can you tell if I am doing better? How can you tell if the leukemia is gone?
  
• What can I do to stay healthy? Do you have any recommendations about diet and exercise?
  
• Should I try to eat organic food? What about milk and meat products from animals that have been injected with growth hormone?
  
• Can you refer me to a good support group for people with CLL?

Stage 0-II Disease

• Why do you recommend that I wait before starting treatment?