What Is Mantle Cell Lymphoma?
Mantle cell lymphoma is a cancer of white blood cells, which help your body fight infections.
You may hear your doctor refer to your condition as a type of "non-Hodgkin's lymphoma." These are cancers of the lymphocytes, a specific type of white blood cell.
Lymphocytes are found in your lymph nodes, the pea-sized glands in your neck, groin, armpits, and other places that are part of your immune system.
If you have mantle cell lymphoma, some of your lymphocytes, called "B-cell" lymphocytes, change into cancer cells. This means they multiply quickly and out of control.
These cancer cells start to form tumors in your lymph nodes. They may enter your blood or lymph channels and spread to other lymph nodes, as well as your bone marrow (the soft center where blood cells are made), digestive tract, spleen, and liver.
Often, mantle cell lymphoma has spread to other parts of your body by the time you get a diagnosis. Although in most cases it can't be cured, treatment and support can help you live longer and better. And researchers are looking for new treatments that can do even more.
It's normal to have worries and questions about any serious condition. Learn about your treatment options, and seek out family and friends for support. They can help you get through the emotional and physical challenges ahead.
Doctors aren't sure why people get mantle cell lymphoma.
You can't "catch" it like you do a cold. But scientists believe that most people with this disease, and other lymphomas that affect B-cell lymphocytes, share a "mutation" or change in some of their genes.
This change triggers the release in your body of a protein called cyclin D1, which is in charge of cell growth. Too much leads to the uncontrolled growth of a certain type of B cell, causing mantle cell lymphoma.
Men get mantle cell lymphoma more often than women. The average age of people with this form of cancer is the early 60s.
Most people with mantle cell lymphoma have cancer cells in more than one lymph node and in other parts of the body. You may have symptoms such as:
- Loss of appetite and weight
- Night sweats
- Nausea or vomiting
- Swollen lymph nodes in your neck, armpits, or groin
- Heartburn, belly pain, or bloating
- A sense of fullness or discomfort from enlarged tonsils, liver, or spleen
- Pressure or pain in the lower back, often going down one or both legs
Getting a Diagnosis
Your doctor will do a physical exam and may ask you questions such as:
- Have you lost weight recently?
- Are you less hungry than usual?
- Have you noticed any swelling in your groin, armpits, neck, or another part of your body?
- Do you feel unusually tired?
Your doctor may also use several tests to diagnose mantle cell lymphoma:
Blood tests. Your doctor takes some of your blood and sends it to a lab to get analyzed. The blood tests can reveal the number of blood cells you have, how well your kidneys and liver are working, and whether you have certain proteins in the blood that suggest you have mantle cell lymphoma.
Biopsy. Your doctor may want to check a sample of the tissue in a lymph node. To do that, they'll remove either the whole lymph node or part of it.
The lymph nodes in your neck, armpits, and groin are close to your skin. Your doctor will numb your skin. They’ll then make a small cut and remove a sample of the lymph node. It's usually an outpatient procedure, which means you don't have to stay overnight in a hospital.
Using a microscope, experts will look at the sample to see if there are cancer cells. They also test the tissue for cell changes and other signs that point to mantle cell lymphoma.
Your doctor may also take samples of your bone marrow, usually from your hip bone, to see if the cancer has spread. You lie down on a table and get a shot that numbs the area. Then your doctor uses a needle to remove a small amount of liquid bone marrow. They will look at the sample under a microscope and check for cancer cells.
Your doctor may suggest imaging tests to look for tumors throughout your body. These may include:
CT scan. It's a powerful X-ray that makes detailed pictures of the inside of your body.
PET scan. This test uses a bit of radioactive material to look for signs of cancer.
Colonoscopy. In this procedure, your doctor looks at the inside of your colon by inserting a thin, lighted tube into your rectum. You're not awake for this test, so you don't feel any pain. The colon, also called the large intestine, is a common place for mantle cell lymphoma to spread.
These tests not only help to diagnose mantle cell lymphoma, they also allow doctors to "stage" the cancer. Staging determines how far the cancer has spread and how fast it is growing.
Questions for Your Doctor
- Do I need to see a doctor who specializes in treating non-Hodgkin's lymphomas?
- At what stage is my mantle cell lymphoma? How fast is it growing?
- Do I need treatment now, or can I "watch and wait?"
- What are my treatment options? Which treatments do you recommend?
- What are the possible side effects from treatment? How can they be managed?
- What follow-up care will I need? How will you check for any return of the cancer after my treatment ends?
Most people with mantle cell lymphoma will begin treatment right after diagnosis and staging of the cancer. But for a small number of people who are otherwise well, have no symptoms, and have a slow-growing form of the cancer, doctors might suggest "watchful waiting." During this time, your doctor will watch your health closely. For example, you might visit your doctor every 2 to 3 months and have tests every 3 to 6 months. If your lymph nodes get bigger or you start to get other symptoms, then your doctor may start treatment.
Your treatment may include:
Chemotherapy. These medicines work in different ways to kill cancer cells. You may get them in a pill or through an IV.
Immunotherapy. These drugs prompt your body's immune system to recognize and destroy cancer cells. You often get it along with chemotherapy.
Targeted therapy. These medicines block proteins that cancer cells use to survive and spread.
Stem cell transplant. Your doctor may also suggest this treatment along with high-dose chemotherapy.
Stem cells are found in your bone marrow and help make new blood cells.
There are two types of stem cell transplants. In "autologous" transplants, the stem cells come from your own body, rather than from a donor.
In this kind of transplant, your doctor will give you a drug called a growth factor that causes your stem cells to move from your bone marrow to your bloodstream. Your doctor collects the cells from your blood. Sometimes they’re frozen so they can be used later.
After your doctor collects your stem cells, you will be treated with high doses of chemotherapy or radiation that could last for several days. This can be a tough process because you may have side effects like mouth and throat sores or nausea and vomiting. You can take medication that brings some relief.
A few days after your chemotherapy is over, you may be ready to begin your stem cell transplant. You’ll get the cells through an IV. You won't feel any pain, and you'll be awake while it's happening.
It can take 8 to 14 days after the transplant for your bone marrow to start making new blood cells. You may need to stay in the hospital for a few weeks. During this time, you may also have a chance of getting an infection while your bone marrow gets back to normal, so your doctor may give you antibiotics to keep you from getting sick.
You may still have higher odds for getting an infection for several months after you get home from the hospital.
A second type of stem cell transplant is called an "allogenic" transplant. The process is similar, except the stem cells come from a donor. Close relatives, such as your brother or sister, are the best chance for a good match so that your body doesn't reject the new stem cells or treat them like they’re attacking your body.
If that doesn't work, you need to get on a list of potential donations from strangers. Sometimes, the best chance for the right stem cells for you will be from someone who is in your racial or ethnic group.
It's natural to feel worried or anxious while you recover from a stem cell transplant. Your family and friends can be a great source of support. It always helps to share your worries and fears with other people. You can also join a support group, where you can talk to people who understand what you're going through.
Taking Care of Yourself
You're likely to get side effects from your treatment for mantle cell lymphoma. They vary depending on the type of drugs you're taking. Medicine can ease the intensity of many side effects, so be sure to talk to your doctor about how your treatment is affecting you.
Some common side effects from treatment include:
- Fever or chills
- Nausea and diarrhea
- Skin reactions
- Hair loss
- Shortness of breath
- Tingling, burning, numbness in your hands or feet
Managing your mantle cell lymphoma can sometimes be a challenge. Learn as much as you can about your disease so that you can be a partner with your health care team in making decisions.
You may also find strong sources of emotional support by reaching out to counselors, social workers, religious leaders, and cancer organizations that can provide information and support.
What to Expect
Since mantle cell lymphoma has often spread throughout your body by the time it's diagnosed, it can be hard to cure. Even though it tends to grow slower than some lymphomas, it often doesn't respond as well to treatment, or sometimes the cancer returns.
You might want to ask your doctor about taking part in a clinical trial. They test new drugs to see if they are safe and if they work. They often are a way for people to try new medicine that isn't available to everyone. Your doctor can tell you if one might be a good fit for you.
To learn more about mantle cell lymphoma and to find out how to join support groups, visit the web site of the Leukemia & Lymphoma Society.