Making treatment decisions about mantle cell lymphoma

Mantle cell lymphoma (MCL) is a type of cancer that begins in the lymph nodes. Lymph nodes are small, bean-shaped glands that contain white blood cells, help the body fight infections, and help filter out unwanted substances from the body (such as cellular debris and excess fluid). There are hundreds of lymph nodes located throughout the body.

MCL begins in a part of the lymph node known as the mantle zone. Like other cancers, MCL occurs when cells mutate and begin to grow and spread in an uncontrolled way. MCLs are the result of mutations in white blood cells called lymphocytes.

MCL is a type of non-Hodgkin’s lymphoma. It is much less common than other types of lymphomas, typically more aggressive, and often diagnosed in later stages where the cancer has progressed. MCL is most often diagnosed between the ages of 60 and 70 years, and it’s more common in males.

Treatment for MCL

While MCL is a different experience for every person, the main goal of treating MCL will be remission. The type of therapies used to try and achieve that remission will depend on multiple factors. These factors include the stage of the cancer, the symptoms a person is experiencing, and results of biopsies and other tests. The overall health of the person being treated and that person’s preferences are also important factors that will need to be considered.

What does remission mean?

Remission means that cancer is under control. A partial remission means that symptoms and disease activity are significantly reduced but not completely gone. A complete remission means that symptoms are completely gone—however, the cancer will not be considered cured, because there is always a chance of recurrence.

What therapies treat MCL?

Most cases of MCL are treated with a combination of chemotherapy and immunotherapy, systemic therapies that are effective at reaching cancer cells that are spread throughout the body. Radiation therapy, targeted therapy (another type of systemic therapy), and stem cell transplantation are also treatment options. Again, MCL is a different experience for everyone, and a person’s best source of information will be a healthcare provider.

How will treatment affect quality of life?

Quality of life is also an important consideration and treatment goal. Quality of life refers to a person’s overall well-being—how they feel physically, mentally, and emotionally, and how well they are functioning in the different areas of their life.

Quality of life should be discussed with a healthcare team when making treatment decisions. Both MCL symptoms and side effects caused by the therapies that treat MCL can impact a person’s quality of life. These are important considerations when choosing a treatment.

Working with your healthcare team

When talking to your healthcare team, these questions can help you understand the goals, the benefits, the side effects, and the day-to-day impact of different cancer treatments, and help you take an active role in making treatment decisions.

Questions about your treatment goals:

• What are the most important things I should know about my diagnosis?
• What treatment approach do you recommend?
• Why do you recommend this approach?
• What are the goals of this treatment approach?
• What are our next steps in treatment?
• Are there other providers or specialists you recommend I work with?

Questions when starting a therapy:

• How does this therapy work?
• How is the therapy taken and how often?
• How will you know if the therapy is working?
• What side effects can this treatment cause?
• Can this therapy interact with other medications, alcohol, or certain foods?
• What can be done to manage side effects during treatment?
• What treatment options are available if this therapy doesn’t work?
• Should I consider participating in a clinical trial?

Questions about support and quality of life:

• What can be done to manage pain, discomfort, fatigue, digestive problems, and/or other symptoms?
• What can I do to take care of my mental and emotional health?
• What can I do to keep myself as healthy as possible? What should I avoid?
• Who can I talk to if I need help or support during treatment?
• What will treatment cost? Who can I talk to if I am concerned about the cost of treatment?

If you have questions about your diagnosis, your treatment, and your quality of life while living with MCL, your healthcare providers will be your best source of information.