Get copies of your records
Before anything else, make sure you have your own copies of your medical records. They belong to you — and understanding what they say is the foundation for every decision ahead.
You may have received a binder of paperwork, a letter in the mail, or a notification through a patient portal. However it arrived, your diagnosis is described in a set of records — and getting familiar with them will help you ask better questions and make more informed decisions.
Your lymph node biopsy pathology report
The pathology report is the most important document you will receive. It describes what the laboratory found when examining tissue from your biopsy under a microscope. This is the report that confirmed your diagnosis of mantle cell lymphoma.
Your pathology report will likely include several pieces of information that may feel unfamiliar at first. Here are the ones most relevant to MCL:
A percentage that reflects how quickly the lymphoma cells are dividing. A higher Ki-67 generally indicates faster-growing disease. Your doctor will use this to help assess the urgency of treatment.
A mutation in the TP53 gene is considered a high-risk feature in MCL and may influence treatment decisions. Not everyone with MCL has this mutation, but if your report mentions it, it is worth discussing with your care team.
Most MCL is "classic" MCL. Blastoid and pleomorphic are more aggressive subtypes characterized by cells that look different under the microscope. If either word appears in your report, mention it to your doctor.
A chromosomal change that is a hallmark of MCL. Confirming this is present is part of establishing the diagnosis. It leads to overproduction of a protein called cyclin D1 that drives abnormal cell growth.
If your biopsy was not reviewed by a pathologist experienced in lymphoma, an MCL specialist may recommend sending your tissue slides to another institution for a second pathology review. This is common and important — MCL has specific features that require an experienced eye to confirm.
Your PET scan or CT scan
After diagnosis, your doctor will likely order imaging to determine how far the lymphoma has spread in your body. This is called staging.
The most common imaging tests used in MCL are:
Combines a positron emission tomography (PET) scan with a CT scan to show both the structure and activity of lymphoma throughout the body. This is the most common imaging test used in MCL.
A detailed X-ray that creates cross-sectional images of the body. Sometimes used on its own to assess lymph node size and organ involvement.
Most people with MCL are diagnosed at an advanced stage (Stage III or IV), meaning the lymphoma has spread beyond one area of the body. This sounds alarming but does not necessarily mean treatment cannot be effective — staging in MCL guides treatment decisions more than it predicts outcome on its own.
Request a copy of the actual scan report — not just a summary. The full radiologist's report will be useful if you seek a second opinion or consult with a specialist at another center.
Your blood work
Blood tests are used at diagnosis and throughout treatment to understand how MCL is affecting your body and how well you are tolerating therapy. Key tests include:
Measures your red blood cells, white blood cells, and platelets. MCL or its treatment can affect all three. Your doctor will monitor your CBC closely throughout treatment.
An enzyme that can be elevated when lymphoma cells are breaking down rapidly. It is sometimes used as a marker of disease activity.
A protein shed by lymphoma cells. Elevated levels can indicate more active disease and are one component of the MIPI risk score.
Checks kidney and liver function, which matters both at baseline and during treatment — some MCL therapies can affect these organs.
Essential for: identifying the immunophenotype of the lymphoma; confirming the B-cell pattern typical of MCL. This test helps distinguish MCL from other B-cell lymphomas.
Bone marrow biopsy
Many people with MCL will also have a bone marrow biopsy — a procedure where a small sample of bone marrow is taken, usually from the hip bone, to check whether MCL cells have spread there.
This is a routine part of staging and helps give a complete picture of where the disease is in your body. The procedure is done under local anesthesia and is usually brief.
What to do with your records
Request all of your records now
Contact your doctor's office, hospital, or patient portal and ask for copies of your pathology report, imaging reports (PET/CT), blood work results, and any bone marrow biopsy results. You are entitled to these records.
Keep a paper and digital copy
Create a folder — physical or digital — to organize your records. You will refer to them frequently, especially if you consult with a specialist or seek a second opinion.
Don't try to understand everything at once
These documents can be overwhelming. Focus on the terms that come up most often — Ki-67, TP53, stage — and look up others as they become relevant to your conversations with your doctor.
Bring your records to every appointment
Any new doctor — especially a specialist or second opinion provider — will want to review your pathology and imaging before forming an opinion. Having them in hand saves time and avoids delays.