What questions should I ask my oncologist about CLL

Important Questions to Ask Your CLL Oncologist

I'm glad you're thinking about how to engage with your care team. Here are key questions organized by topic that will help you understand your situation and treatment options better:

ABOUT YOUR DIAGNOSIS & PROGNOSIS

1. What stage is my CLL, and what does that mean for my outlook?

   • This helps you understand disease severity and what to expect

2. Have you done genetic testing on my CLL cells? (Ask specifically about):

   • IGHV mutation status
   • TP53, NOTCH1, SF3B1, and ATM mutations
   • Cytogenetic abnormalities (del(17p), del(11q), trisomy 12)
   • Why: According to NCCN Guidelines, these genetic features help predict how your CLL will behave and guide treatment decisions

3. What is my beta-2 microglobulin and LDH level, and what do these mean?

   • These blood markers help assess disease aggressiveness

4. Do I need treatment right now, or should we monitor my CLL?

   • Many CLL patients don't need immediate treatment ("watch and wait" approach)

ABOUT TREATMENT OPTIONS

1. What treatment approach do you recommend for me, and why?

   • Ask your doctor to explain their reasoning based on YOUR specific situation

2. What are the main treatment options available for someone with my CLL profile?

   • According to NCCN Guidelines, modern CLL treatment typically includes:
     • BTK inhibitors (like ibrutinib, acalabrutinib, zanubrutinib) - drugs that target a specific protein
     • BCL2 inhibitors (like venetoclax) - often combined with anti-CD20 antibodies
     • Chemoimmunotherapy - traditional chemotherapy combined with antibody therapy
     • CAR T-cell therapy - for certain situations
   • Ask which category fits your case and why

3. What are the pros and cons of each option for my specific situation?

   • Side effects
   • How long treatment typically lasts
   • Success rates for someone like me
   • Quality of life during treatment

4. If I start treatment, what's the goal? (Complete remission? Partial remission? Disease control?)

ABOUT SIDE EFFECTS & SAFETY

1. What side effects should I expect, and how will we manage them?

   • Ask specifically about:
     • Infections (CLL weakens immunity)
     • Tumor lysis syndrome (TLS) - a serious condition when cancer cells die too quickly
     • Neutropenia (low white blood cells)
     • Other drug-specific side effects

2. What symptoms should I report immediately?

   • When should I call versus wait for my next appointment?

3. Will I need supportive care? (Ask about):

   • Prophylactic antibiotics or antivirals
   • Growth factor support if blood counts drop
   • Monitoring schedule

ABOUT MONITORING & FOLLOW-UP

1. How will we monitor my response to treatment?

   • Blood tests (CBC, LDH, beta-2 microglobulin)
   • Imaging (CT scans, PET scans)
   • How often?

2. What does "good response" look like for my treatment?

   • Complete remission vs. partial remission
   • What happens if my CLL doesn't respond or comes back?

3. What's the plan if my CLL becomes resistant to this treatment?

   • What are the next-line options?

ABOUT RICHTER TRANSFORMATION (Important for CLL Patients)

1. What is Richter transformation, and what's my risk?

   • According to NCCN Guidelines, Richter transformation occurs in 2-10% of CLL patients when the disease transforms into a more aggressive lymphoma (DLBCL)
   • Ask: Do I have any risk factors? (IGHV-unmutated status, TP53 mutations, or complex karyotype increase risk)
   • What symptoms should prompt urgent evaluation?

2. If I develop Richter transformation, what would that mean for my treatment?

ABOUT CLINICAL TRIALS

1. Are there clinical trials appropriate for my CLL that I should consider?
   • NCCN Guidelines emphasize that clinical trials should be considered as a treatment option
   • Ask what trials are available and whether you're eligible

ABOUT YOUR ROLE IN DECISION-MAKING

1. Can we discuss my preferences for treatment intensity and quality of life?

   • Some patients prioritize aggressive treatment; others prefer gentler approaches
   • Your values matter in shared decision-making

2. How often will we meet, and how can I reach you between appointments?

   • Establish communication expectations

3. Can you provide me with written information or resources about my treatment plan?

   • Ask for educational materials from reputable sources like the American Cancer Society or Leukemia & Lymphoma Society

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TIPS FOR YOUR APPOINTMENT

✅ Bring a notebook or recording device (ask permission first) to capture details

✅ Bring a trusted person - a family member or friend can help you listen and remember information

✅ Write down your questions beforehand - prioritize the most important ones

✅ Ask your doctor to explain things in plain language - don't hesitate to ask them to repeat or clarify

✅ Ask for written summaries of your diagnosis, treatment plan, and follow-up schedule

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AUTHORITATIVE RESOURCES

For more information about CLL, consult:

• NCCN Guidelines for CLL - the standard treatment guidelines used by oncologists
• American Cancer Society - patient-friendly CLL information
• Leukemia & Lymphoma Society - CLL-specific resources and support
• National Cancer Institute (NCI) - comprehensive cancer information

This information is for educational purposes only. Always consult your healthcare team for personalized medical advice and decisions.