Questions to ask: Lymphoma

Diagnosis

• What exact type and subtype of lymphoma do I have?
• Is my lymphoma fast-growing or slow-growing?
• Is it Hodgkin or non-Hodgkin lymphoma?
• What stage is it, and do I have B symptoms?
• Was my biopsy big enough to be sure of the diagnosis?
• Were tests done for MYC, BCL2, and BCL6? Is this double-hit lymphoma?
• What is my risk score, such as the IPI or FLIPI, and what does it mean for me?
• Is the goal of treatment to cure the lymphoma or to control it?
• Do I need treatment now, or can we watch and wait?
• Should I get a second opinion at a lymphoma center?
• Have I been tested for hepatitis B, hepatitis C, and HIV?

Before

• What treatment plan do you recommend, and why?
• How many cycles will I get, and how long will it take?
• Will I need radiation too?
• Will I have a PET scan partway through? How will it change my plan?
• What side effects should I watch for, and who do I call at night or on weekends?
• Do I need a heart test or lung test first?
• Could this treatment affect my fertility? Can I save sperm or eggs first?
• Which vaccines should I get before starting?
• Do I need medicine to prevent hepatitis B from coming back?
• Is there a clinical trial that fits me?
• Can I keep working during treatment?
• How can my caregiver help, and what should they watch for?

During

• Is the treatment working? What did my scan show?
• What is my Deauville score, and what does it mean?
• Are my blood counts safe for my next treatment?
• Should I take medicine to prevent infections?
• What can I do about tingling in my hands or feet?
• Which fevers or symptoms mean I should go to the emergency room?
• Are any of my other medicines or supplements a problem?
• Can I be around children, crowds, or pets?
• If I get CAR T-cell therapy, how long must I stay near the treatment center, and who needs to stay with me?
• How long should I avoid driving after CAR T-cell therapy?
• 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 will I need scans?
• What signs could mean the lymphoma has come back?
• If my lymphoma comes back, what are my options, such as CAR T-cell therapy or bispecific antibodies?
• What long-term effects could my treatment cause?
• Do I need heart tests, thyroid tests, or early breast screening?
• When should I get vaccines again?
• 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.