Section 1
At diagnosis
These questions help you understand your diagnosis and what it means for your care going forward.
What type of mantle cell lymphoma do I have?
What stage is my MCL, and what does that mean for me?
Is my disease considered indolent (slow-growing) or more aggressive?
Do I need to start treatment right away, or is watchful waiting an option?
Should I get a second opinion? Can you recommend a specialist in MCL?
Should my biopsy sample be reviewed by a lymphoma pathologist at a major cancer centre?
What additional tests do I need before we can finalize a treatment plan?
Section 2
About your test results
Understanding key markers in your pathology report can help you have more informed conversations with your care team.
What is my Ki-67 score, and what does it indicate about how fast my lymphoma is growing?
Was TP53 testing done? If so, what did it show — and how does it affect treatment choices?
What did my PET or CT scan show about where the lymphoma is in my body?
Was a bone marrow biopsy done? What did it find?
What does my MIPI score tell us about my prognosis?
Are there any other genetic or molecular tests you recommend?
Section 3
About treatment options
MCL treatment is complex and evolving quickly. These questions help you understand what's being recommended and why.
What treatment do you recommend for me, and why?
What are the goals of treatment — remission, long-term control, or something else?
What are the main side effects of this treatment, and how will they be managed?
Are there other treatment options I should consider?
Is a stem cell transplant part of the plan? If so, when and what type?
What happens if this treatment doesn't work — what would come next?
How will we know if the treatment is working?
How will treatment affect my daily life, work, and ability to travel?
Section 4
About clinical trials
Clinical trials give patients access to promising new treatments before they are widely available. It's worth asking at every stage.
Worth asking at every appointment
The MCL treatment landscape is moving fast. A trial that wasn't available six months ago may be open today. Ask at diagnosis, at relapse, and whenever your plan changes.
Are there any clinical trials I would be eligible for right now?
What are the potential benefits and risks of joining a trial?
Would participating in a trial delay or replace my standard treatment?
Where would the trial take place, and how often would I need to come in?
If I don't join a trial now, can I ask again later if my situation changes?
Section 5
During treatment
Once treatment has started, a new set of questions becomes relevant — about monitoring, side effects, and what to watch for at home.
Which side effects should I call about right away, and which can wait until my next appointment?
Are there any activities, foods, or medications I should avoid during treatment?
How often will we check to see if the treatment is working?
What scans or lab tests will you use to measure my response?
What does a good response look like — and what would prompt a change in plan?
Who on your team should I contact if I have a problem between appointments?
Is there a nurse navigator or patient coordinator I can reach out to?
Section 6
After treatment / remission
Finishing treatment raises its own questions about monitoring, long-term effects, and what comes next.
How will you monitor me for signs of relapse going forward?
How often will I need follow-up appointments and scans?
Are there long-term side effects from treatment I should watch for?
What symptoms should prompt me to call you between scheduled visits?
Is maintenance therapy recommended, and what does that involve?
What are my options if the lymphoma comes back?
Section 7
For caregivers
Caregivers often have their own questions — about what to expect, how to help, and how to take care of themselves too.
What is the best way for me to support my family member through treatment?
What changes at home should we prepare for during treatment?
What warning signs should I watch for, and when should I call the care team?
Are there support services available for caregivers — social work, counselling, or respite care?
Is there a caregiver support group connected to this centre or program?
More caregiver resources
Our caregiver support page covers the emotional and practical side of caring for someone with MCL.
Caregiver support → Medical Disclaimer: This information is for educational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.