Questions to ask: Follicular lymphoma

Diagnosis

• Is this classic follicular lymphoma? What grade is it?
• Was the biopsy large enough to be sure of the grade?
• What stage is it, and where is the lymphoma in my body?
• Is my tumor burden low or high? Do I meet any of the GELF criteria?
• What is my FLIPI score, and what does it mean for me?
• Do I need treatment now, or can we watch and wait?
• If we watch and wait, how often will I have visits and scans?
• Is there any sign that my lymphoma has changed into a faster-growing type?
• Is my lymphoma in only one area? Could radiation cure it?
• Have I been tested for hepatitis B, hepatitis C, and HIV?
• Should I get a second opinion at a lymphoma center?

Before

• Why are you recommending treatment now?
• Which treatment do you suggest, such as BR, R-CHOP, or lenalidomide with rituximab, and why?
• How long will treatment last, and how often will I come in?
• Should I get maintenance therapy after treatment? What are the pros and cons for me?
• What side effects should I watch for, and who do I call at night or on weekends?
• Which vaccines should I get before starting?
• Do I need medicine to prevent hepatitis B, shingles, or other infections?
• Could this treatment affect my fertility?
• Is there a clinical trial that fits me?
• Can I keep working during treatment?
• How can my caregiver help?

During

• Is the treatment working? What did my scan show?
• Are my blood counts safe for my next treatment?
• What can I do if I get a reaction during my infusion?
• Which fevers or symptoms mean I should go to the emergency room?
• Are any of my other medicines or supplements a problem?
• Do I need a blood thinner while taking lenalidomide?
• Can I be around children, crowds, or pets?
• If I get a bispecific antibody, do I need to stay in the hospital for the first doses?
• If I get CAR T-cell therapy, how long must I stay near the treatment center, and who needs to stay with me?
• What support is there for my family and caregiver?

After

• Am I in remission? Is it a complete response?
• How often will I have check-ups and scans now?
• What signs could mean the lymphoma is growing again?
• If it comes back, will I need a new biopsy?
• If it comes back, what are my options, such as lenalidomide with rituximab, bispecific antibodies, or CAR T-cell therapy?
• Did my lymphoma come back within two years? What does that mean for me?
• When should I get vaccines again?
• What long-term effects could my treatment cause?
• Who will lead my follow-up care, my oncologist or my primary doctor?
• Can I get a written summary of my treatment and follow-up plan?

Last updated: 2026-10-27. Medically reviewed by Veli Bakalov, MD, medical oncologist (October 2026). General education from Step by Step, the patient portal of HemeOncBuddy.