Questions to Ask About Chronic Lymphocytic Leukemia (CLL)

As you cope with chronic lymphocytic leukemia (CLL) and treatment, it’s important to have honest, open discussions with your cancer care team. You should feel comfortable asking about anything, no matter how small it might seem.

Below are some questions to consider asking about your CLL.

Questions to ask when you're told you have CLL

• 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?
• What vaccinations should I get before starting treatment?
• How much experience do you have treating this type of cancer?
• Should I get a second opinion? Can you recommend a doctor or cancer center?

Questions to ask when deciding on a treatment plan for CLL

• Should I start treatment now? Why or why not?
• If I start treatment early, will it improve my overall survival?
• What are my treatment choices?
• What do you recommend, and why?
• What are the risks and side effects of 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?
• Can I continue to work or travel during treatment?
• What is the outlook for my survival?

Questions to ask during treatment for CLL

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 can 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?

Questions to ask after treatment for CLL

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

Be sure to write down any questions you have that aren’t on this list. For instance, you might want to ask about how you'll feel so that you can plan your work or activity schedule. Or you may want to ask about clinical trials that might be right for you.

Remembering what the doctor says

It can be hard to remember all of the things you’re told at each doctor’s visit, especially when you’re anxious or afraid.

Even if the doctor carefully explains things, you might not hear or remember all that’s said or shown to you. Here are some ways to help you remember everything your doctor tells you.

• Take notes on what your doctor says.
• Ask if you can record your talks.
• Take a family member or friend with you. Ask them to remind you of questions you want to ask and ask them to take notes, so you can focus on listening and talking directly with the doctor.

Doctors aren’t the only ones who can give you information. Other health care professionals, such as nurses and social workers, can answer a lot of your questions. To find out more about speaking with your health care team, see The Doctor-Patient Relationship.