What does your future hold? For people diagnosed with mantle cell lymphoma (MCL) and their loved ones, the answer to this question is closely tied to the prognosis of cancer. Your prognosis (outlook) tells you how likely you are to recover from MCL. Your oncologist will use several factors to determine your prognosis.

Doctors and researchers continue to find new treatments, and the survival rates and outcomes for those living with MCL continue to improve. This article will help you understand more about how doctors assess prognosis and what the statistics might mean for you.

What Is Mantle Cell Lymphoma?

MCL is a rare type of non-Hodgkin lymphoma (NHL), accounting for 5 percent to 7 percent of NHL cases. MCL is a type of B-cell lymphoma because it affects a type of white blood cell known as B cells or B lymphocytes. Specifically, it affects B cells found in the “mantle zone” or the outer edge of a lymph node.

Due to its aggressive nature, MCL is often a difficult type of cancer to treat. Your oncologist may prescribe a combination of chemotherapy and immunotherapy drugs (known as chemoimmunotherapy) to help control lymphoma cell growth. You may also receive a bone marrow transplant to replenish your body with healthy blood cells.

Examples of MCL treatments include:

• First-line (initial) treatment with R-CHOP — Rituximab (Rituxan), cyclophosphamide (Cytoxan), hydroxydaunorubicin (also known as doxorubicin, Adriamycin), vincristine (Onvocin), and prednisone
• Hyper-CVAD — Cyclophosphamide, vincristine, doxorubicin, dexamethasone
• Bendamustine (Treanda)
• Bortezomib (Velcade)
• Lenalidomide (Revlimid)
• Bruton tyrosine kinase (BTK) inhibitors, including ibrutinib (Imbruvica) and zanubrutinib (Brukinsa)
• Chimeric antigen receptor T-cell (CAR T-cell) therapy
• High-dose chemotherapy regimen followed by bone marrow transplant

Understanding Survival Rates

When reading and learning more about survival rates and prognosis with MCL, it’s important to note where the statistics are coming from. Doctors and researchers base survival rates on large numbers of people with MCL using data from clinical trials or databases. Much of this information is collected from studies conducted several years ago.

Overall Survival

Studies show that rituximab and other new MCL treatments have improved median overall survival (OS) in recent years. According to research, the median OS ranges from six years to nearly 10 years. This means that half of the people with MCL are alive six to 10 years after receiving their diagnosis. On a hopeful note, those diagnosed after 2000 showed an OS of 11.25 years.

As we continue to learn more about MCL and how it’s treated, survival rates are likely to improve. The development of new treatment options like the monoclonal antibody (immune protein-based drug) rituximab and bone marrow transplant means that many people living with MCL have a better prognosis today compared to 20 years ago.

Relative Five-Year Survival Rate

When your doctor talks about the survival of those living with MCL, they likely refer to the five-year relative survival rate. This rate refers to how many people with MCL are likely to live for at least five years compared to the general population.

The five-year relative survival rate for MCL is roughly 55 percent — this means that people with MCL are 50 percent as likely to live at least five years after their diagnosis compared to those without MCL.

The survival rate of MCL also changes based on age. People who are under the age of 50 have a five-year relative survival rate of 75 percent. On the other hand, people over the age of 75 have a five-year relative survival rate of 36 percent.

Factors That Affect Prognosis

Several factors influence your prognosis with MCL. Many of these factors are driven by how lymphoma cells grow.

Age

According to NORD, most people diagnosed with MCL are between the ages of 60 and 70 years old. However, it can affect people in their 30s up to their 80s. Research shows that older individuals with MCL tend to have a worse prognosis compared to younger individuals.

For example, one study of more than 1,100 people with MCL found that the OS rates after two years were 92 percent for people younger than 65 and 86 percent for those 65 and older. This means that after two years, 92 percent of young people were alive compared to 86 percent of older people.

MCL Stage

Many types of cancer use a staging system as a way to measure prognosis. Oncologists use the Lugano classification system to divide MCL and other types of NHL into four different stages based on how lymphoma has spread throughout the body. The higher the stage number, the more advanced the MCL is.

Most people diagnosed with MCL are diagnosed with advanced-stage disease, which is associated with a poorer prognosis.

Lactate Dehydrogenase Levels

Lactate dehydrogenase (LDH) is an enzyme made by nearly every organ in your body. If your organs are damaged by MCL, they’ll release LDH into your bloodstream, which can be measured with a blood test. High LDH levels are often associated with poorer prognosis in people with NHL.

Genetic Mutations

Cancer is caused by changes or mutations in certain genes that affect how cells grow and divide. MCL is typically caused by mutations in the cyclin D1 gene — as a result, lymphoma cells make too much cyclin D1 protein, which causes them to grow and divide uncontrollably.

Other gene changes can affect your MCL prognosis. For example, mutations in the TP53 gene are associated with worse treatment response and prognosis. This gene helps regulate the cell cycle, growth, and division.

MCL Subtypes

There are two subtypes of MCL — classical and leukemic non-nodal. Researchers have found that the blastoid variant of classical MCL is the most aggressive form and is associated with a worse prognosis. This is especially true if your lymphoma cells make too much of the protein Ki-67, a marker of rapid cell division.

On the other hand, leukemic non-nodal MCL — which accounts for 10 percent to 20 percent of MCL cases — tends to be slow-growing, or indolent, and is associated with a more favorable prognosis.

How Is Prognosis Measured?

MCL prognosis can’t always be accurately predicted using staging alone. The International Prognostic Index (IPI) uses a combination of several factors to help oncologists better understand a person’s prognosis.

Doctors and researchers have also developed a version of this system specifically for MCL known as the MCL International Prognostic Index (MIPI). The MIPI divides people into low-, intermediate-, and high-risk groups based on their:

• Age
• LDH levels
• Performance status, or the ability to complete daily tasks
• White blood cell count

Your oncologist will use these factors to determine your prognosis with MCL.

Take Steps To Improve Your Prognosis

Taking these steps can help improve your MCL prognosis:

• Attend all follow-up appointments with your oncologist.
• Stick to your treatment plan created by your oncologist.
• Stay in close communication with your health care providers about any new side effects from treatment or MCL symptoms.
• Make a consistent routine to follow and make positive choices, like eating a well-balanced diet and exercising.
• Ask whether any newer treatments have become available that might be a better option for your lymphoma.

Talk With Others Who Understand

On MyLymphomaTeam, the online social network for people with lymphoma and their loved ones, more than 14,000 members come together to ask questions, give advice, and share their stories with others who understand life with lymphoma.

Have you or a loved one been recently diagnosed with mantle cell lymphoma? Have you discussed your outlook with your doctor? Share your experience in the comments below, or start a conversation by posting on your Activities page.