When a Rare Lymphoma Strikes: Understanding Mantle Cell Lymphoma Prognosis

A cancer diagnosis is always a scary prospect. If you or loved one was recently diagnosed with mantle cell lymphoma (MCL), you’re probably looking for more information about this particular type of cancer, and wondering what to expect.

What is mantle cell lymphoma?

As your doctor may have explained, MCL is cancer of a certain type of blood cell, called a “lymphocyte.” MCL falls under the category of non-Hodgkin lymphoma, and is specific to your B-lymphocytes (also referred to as “B cells”).1 Lymphoma can accumulate in your lymph nodes and cause them to swell.1 Depending on where these enlarged lymph nodes are found, doctors may remove them and run tests on them in order to understand your specific cancer better.1 MCL is a fairly rare cancer, accounting for about 3-10% of all non-Hodgkin lymphoma cases per year.2 MCL tends to be more common in older adults (the average age of a patient with an MCL diagnosis is the mid-60s).1

How is mantle cell lymphopma staged?

Your doctor will stage your MCL using multiple factors. They will ask about “B-symptoms,” which include fevers, night sweats, and weight loss of 10% or greater.2 They will examine you physically to see if your liver and/or spleen are enlarged, and check for any enlarged lymph nodes. Your doctor will order blood tests to see if any of your blood counts are low. They will send you in for a CT scan or a PET-CT scan to see where you have active MCL in your body. If your doctor is worried that the disease is in your bone marrow, they may have you do a bone marrow biopsy.1 All of these tests will give your doctor the most complete picture of your current disease.

What are the types of mantle cell lymphoma?

MCL is considered an aggressive, or fast-growing, type of non-Hodgkin lymphoma; however, a small amount of patients have a type of MCL called “indolent” MCL.1 This means that the disease is slow growing, and the patient’s immune system is keeping the disease in check. Patients with indolent MCL are usually left untreated, a process called watchful waiting. This can be scary for many patients, knowing that they have cancer, but aren’t being treated for it. Your doctor will see you every 2-3 months, and your doctor will begin treatment at the time you begin to exhibit symptoms that your cancer may be growing.1

How is mantle cell lymphoma treated?

Most patients with MCL are found to have stage III or IV disease. How you will be treated will depend on quite a few factors. Your age, your current level of fitness, the specific genes of your cancer, and your presence of symptoms are some of the factors that doctors take into consideration when deciding the best treatment for you.1 Most patients will begin treatment with a mixture of chemotherapy and a type of drug known as a biological agent.1,2 Biological agents target specific parts of cancer cells or stimulate your immune system, while chemotherapy targets cancer that has spread in the body.3 Some of these treatments may be aggressive, some may be less so, depending on your health factors.

What is the prognosis for mantle cell lymphoma?

Most patients who receive treatment for MCL will respond to treatment (about 50-90%) but less than a third will have a complete response to treatment.1 Most patients will have a relapse in less than 18 months.1,2 There are second-line therapies available, including stem cell transplants (both from your own cells, and from donor cells), and maintenance therapies (where you take an oral drug daily or receive an infusion monthly) that can keep MCL from progressing.1 For most patients, the length of survival is 3-6 years, though if a patient is young and treated with aggressive chemotherapy regimens, survival can exceed 10 years.1,2 These numbers are also improving as new treatments for MCL have become available in recent years. Researchers are still looking for new and better therapies for MCL, and new drugs and therapy combinations are currently being tested.

If you have any questions about your MCL diagnosis, be sure to talk with your oncology team. They have many resources to help you and will work with you to find the best treatment for your disease.

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