Questions to ask: Mantle cell lymphoma

Diagnosis

• Am I sure this is mantle cell lymphoma? Was cyclin D1 or SOX11 checked?
• Is my MCL the classic form, the slower non-nodal form, or the blastoid form?
• What stage is it, and where is the lymphoma in my body?
• What is my MIPI score and my Ki-67?
• Was my lymphoma tested for a TP53 change? What did it show?
• Do I need treatment now, or can we watch and wait?
• Is the goal to control the lymphoma for a long time, or is cure possible for me?
• Do I need an endoscopy, colonoscopy, or spinal tap?
• Have I been tested for hepatitis B, hepatitis C, and HIV?
• Should I get a second opinion at a lymphoma center?

Before

• Do you recommend an intensive or a less intensive treatment plan for me, and why?
• Will my plan include a BTK inhibitor pill?
• Do you recommend a stem cell transplant for me? What are the pros and cons?
• Should I have my stem cells collected and saved just in case?
• Will I get maintenance rituximab afterward, and for how long?
• What side effects should I watch for, and who do I call at night or on weekends?
• Do I need a heart test before starting?
• Which vaccines should I get before starting?
• Could this treatment affect my fertility? Can I save sperm or eggs first?
• 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?
• Which of my other medicines, supplements, or foods could interact with my BTK inhibitor?
• Should I stop my BTK inhibitor before surgery or dental work?
• How will you check my heart rhythm and blood pressure?
• Which fevers or symptoms mean I should go to the emergency room?
• Should I take medicine to prevent infections?
• 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?
• What support is there for my family and caregiver?

After

• Am I in remission? Is it a complete response?
• Was a test for leftover lymphoma cells (MRD) done, and what does it show?
• How often will I have check-ups and scans?
• What signs could mean the lymphoma has come back?
• If it comes back, what are my options, such as a different BTK inhibitor, CAR T-cell therapy, or a clinical trial?
• How long will I stay on maintenance or on my BTK inhibitor?
• 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.