What Questions Should You Ask About Your CLL Care?

Transcript

Joseph: 

Welcome back to the CLL Collaborate series! I’m Joseph, and this is my doctor, Dr. Johnson. 

Throughout these videos, we’ve stressed the importance of being an empowered patient and staying engaged in your care. But when I was first diagnosed with CLL, I was far from confident—I was nervous asking questions and sharing my concerns.  

As I learned more about CLL and found a healthcare team that supported me, my confidence—and participation in my decisions—grew. 

Dr. Johnson: 

Exactly—and in this video, we’re going to discuss how to communicate at different stages, starting at diagnosis: 

• First, find out if your doctor has experience treating CLL. If you don’t feel like they are a good fit or just want to confirm your treatment plan, consider a second opinion with a specialist. And don’t worry about offending your doctor—getting a second opinion is common practice. 
• Next, it’s important to find out more about your individual disease. Ask: 
• What stage is my CLL, and what is my prognosis? 
• Do I need to have additional testing, like biomarker testing, to help guide my care and treatment decisions? 
• Also ask: Should I start treatment immediately? Why or why not? 
• And, if I am put on watch and wait, how will I be monitored? 

Remember, if you don’t understand something your doctor says, ask for the information to be explained more clearly or in simpler terms. No question is too small when it comes to your health. 

Joseph:  

That’s right, Dr. Johnson. It helped me to write down any questions or concerns in advance of my doctor’s appointments, so I didn’t feel flustered or forget anything. And I brought along my daughter Amy to take notes during the visit. 

When it was time to treat my CLL, I had another set of questions to help me understand what approach could be best for MY disease.  

Starting with: 

• What are my treatment options? Which approach do you recommend and why? 
• What are the potential side effects, and how will they be managed? 
• Are there clinical trials that might be right for me? 
• And, how will we know if the treatment is working? 

Dr. Johnson, are there other questions you feel patients should ask about treatment options? 

Dr. Johnson: 

Of course. You should ask how the recommended treatment is administered and for how long. 

It’s also a good idea to consider: 

• What is the potential impact on my lifestyle? For instance, will the therapy interfere with daily activities or my work schedule? 
• Are there financial resources to assist with costs or to help me plan for the future? 
• Who on the team should I reach out to if I’m having symptoms or side effects? 
• What follow-up care will I need once treatment is over? 
• And, if the treatment is not successful, what is the next step? 

I also want to mention that when you are having these conversations, don’t hesitate to speak up about with your personal preferences and concerns. Your feedback is essential in creating a plan that aligns with your goals and lifestyle. 

Joseph, 

That’s right. Once I was in active treatment, Dr. Johnson and I were in regular communication about how I was doing. Let your healthcare provider know about any new or ongoing symptoms, side effects from treatment, or emotional challenges.  

Dr. Johnson: 

That’s great advice, Joseph. No detail is too small to share—your team can use this information to adjust the care plan to makes sure you are doing as well as possible during treatment. You can also ask your team for recommendations for support groups or mental health resources that might help you. 

Joseph: 

Great point, Dr. Johnson. We’ve covered a lot so be sure to download the guide that goes with this video—it can help you remember what we’ve discussed.   

Visit powerfulpatients.org/CLL to access more CLL information.  Thanks for joining us!