Questions to Ask About Chronic Lymphocytic Leukemia

As you cope with chronic lymphocytic leukemia (CLL) and treatment, you need to have honest, open discussions with your doctor. You should feel comfortable asking about anything, no matter how small it might seem. Here are some questions you might want to ask. Nurses, social workers, and other members of the treatment team may also be able to give you answers.

When you're told you have chronic lymphocytic leukemia

• What is the stage (risk group) of the CLL, and what does that mean for me?
• Will I need to have other tests before we can decide on treatment?
• How much experience do you have treating this type of cancer?
• Should I get a second opinion ?

When deciding on a treatment plan

• Should I start treatment now? Why or why not?
• What are my treatment choices?
• What do you recommend, and why?
• What are the risks and side effects with the treatments that you recommend?
• How often will you test my blood or bone marrow to see how treatment is working?
• What should I do to be ready for treatment?
• How long will treatment last? What will it be like? Where will it be done?
• How will treatment affect my daily activities?
• What is the outlook for my survival?

During treatment

Once treatment begins, you’ll need to know what to expect and what to look for. Not all of these questions may apply to you, but getting answers to the ones that do may be helpful.

• How will we know if the treatment is working?
• Is there anything I can do to help manage side effects?
• What symptoms or side effects should I tell you about right away?
• How can I reach your office on nights, holidays, or weekends?
• Are there any limits on what I can do?
• Can you suggest a mental health professional I can see if I start to feel overwhelmed, depressed, or distressed?

After treatment

• What symptoms should I watch for?
• What will we do if the treatment doesn't work or if the leukemia comes back?
• What will my options be if the leukemia comes back?
• What type of follow-up will I need after treatment?
• When can I return to work?

Be sure to write down any questions you have that are not on this list. For instance, you might want information about how you'll feel so that you can plan your work schedule. Or you may want to ask about qualifying for clinical trials.

Taking another person with you and/or recording your talks with your doctor can be helpful. Collecting copies of your medical records, pathology reports, and radiology reports is a good idea too.