What Is Follicular Lymphoma?
Follicular lymphoma is a cancer that affects white blood cells called lymphocytes. They help your body fight infections.
There are two types of lymphomas: Hodgkin's and non-Hodgkin's, based on the kind of white blood cell they affect. Follicular lymphoma is a non-Hodgkin's lymphoma.
When you have follicular lymphoma, the sick blood cells can travel to many parts of your body, such as your organs, bone marrow, and lymph nodes (pea-sized glands in your neck, groin, and under your arms that are part of your immune system). The blood cells can form tumors in these places.
Although follicular lymphoma usually can't be cured, you can live long and well with it. This cancer grows slowly. You may not need treatment for many years, or ever. But if you do, it usually works well. Many people will have long-term remission after treatment.
Doctors don't know what causes follicular and other non-Hodgkin's lymphomas. Unlike some cancers, they are not passed down in families. In some cases, radiation or cancer-causing chemicals, or certain infections, may be a cause. But other times there is no known cause.
You are more likely to get follicular lymphoma as you age. People are 60 years old, on average, when diagnosed.
You may be at an increased risk to get the disease if you have HIV, rheumatoid arthritis, lupus, or celiac disease, which are all immune system disorders.
You may have no symptoms of follicular lymphoma.
If you do have symptoms, you may have:
- Painless swelling of the lymph nodes in your neck, groin, stomach, or armpits
- Shortness of breath
- Night sweats
- Weight loss
Getting a Diagnosis
First, your doctor will do a physical exam and ask you questions like:
- Have you had a lump in your neck, groin, stomach, or armpits? Was it painful? Did it go away and come back?
- Have you ever been diagnosed with cancer? How was it treated?
- Have you been exposed to any cancer-causing chemicals on the job?
- Have you been diagnosed with HIV, rheumatoid arthritis, lupus, or celiac disease?
- Have you had an organ transplant?
If your doctor notices that you have enlarged lymph nodes, it doesn't mean you have cancer. They're most often caused by infections or other problems.
If you do have one, your doctor may give you an antibiotic to see if it shrinks in a few weeks. If you have other lymphoma symptoms or the lymph node is very large, or if it doesn't shrink with antibiotics, your doctor will do a biopsy.
To do that, they'll remove either the whole lymph node or part of it. If a node is hard to reach, they may use a very thin needle to remove a little bit of lymph node tissue through your skin. Doctors call this a fine-needle aspiration biopsy. This is usually an "outpatient" procedure, which means you don't need to stay overnight in a hospital. Sometimes your doctor may numb the area first, but that's not always needed.
Using a microscope, experts will check the tissue from the biopsy. If it shows that you have follicular lymphoma, your doctor will want to do other tests. These may include blood tests and:
Bone marrow test. Your doctor will take samples of your bone marrow, usually from the back of your hip bone. For this test, you lie down on a table and get a shot that will numb the area. Then your doctor uses a needle to remove a small amount of liquid bone marrow. Your doctor will look at the sample under a microscope and check for sick cells to see if the disease has spread.
CT scan, or computed tomography. It's a powerful X-ray that makes detailed pictures inside your body.
PET scan. This creates 3-D images by using a radioactive chemical that collects where your cells are very active.
The results will help your doctor check which parts of your body are affected and the stage of the lymphoma. Based on that information, you and your doctor can decide if you need treatment and what kind. You may want to get a second opinion before you take action.
Questions for Your Doctor
- Are there any other tests I should have before we decide on treatment?
- What is the stage of my follicular lymphoma and what does it mean?
- Does it need to be treated right away?
- What treatment do you recommend? Why?
- What are the side effects of this treatment?
- How will it affect my daily life?
- How likely is my follicular lymphoma to come back after this treatment?
- What will we do if it does come back?
You may want to ask your doctor if you can take part in a clinical trial. These 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 yet available to everyone. Your doctor can tell you if one of these trials might be a good fit for you.
If you have no symptoms, your doctor may decide just to watch you closely. This is called "watchful waiting." Studies show it works as well as early treatment.
Your doctor may advise starting treatment if:
- Your lymph nodes keep getting larger
- You have a fever or night sweats
- You are losing weight
- You have low blood counts
After treatment, many people stay disease-free for years, although the cancer usually returns. Over time, 30% to 40% of follicular lymphomas behave like or turn into other forms of lymphoma that grow faster and need intensive treatment.
If you do need treatment, it may include one or more of the following:
Radiation. It kills cancer cells.The radiation comes from a high-energy beam, similar to an X-ray, or from material put inside your body in or near the cancer.
Follicular lymphoma responds well to radiation. In some cases, it can cure the cancer. If yours is at an early stage, you may only need radiation. If it's advanced, you may get other treatments as well.
Monoclonal antibodies. These are drugs that act like your body's disease-fighting cells. For most people, rituximab (Rituxan) and obinutuzumab (Gazyva) work well to kill lymphoma cells while doing little damage to normal body tissues. These are often used with chemotherapy as the first treatment in stage II-IV follicular lymphoma.
You may also take rituximab as maintenance therapy, to slow the growth of lymphoma. You get it by IV in your doctor's office or at an infusion center. Your dosing schedule will depend on your particular case. Because it must be given slowly, expect it to take several hours at first.
Chemotherapy. Usually, you get this treatment by IV or as a pill. Because it enters the bloodstream and reaches most parts of the body, it works very well for lymphoma. Tazemetostat (Tazverik) may be one option for patients that have failed or are resistant to treatments and can be used for follicular lymphoma with specific types of mutations. It is considered a "novel" agent because it targets pathways that are specific to the cancer cells. Other novel agents that are used to treat follicular lymphoma include lenalidomide and copanlisib.
Radioimmunotherapy. You get this medication -- Y90 ibritumomab tiuxetan (Zevalin) -- through an IV. It delivers radiation straight to a protein on cancer cells.
Your doctor may recommend it if your lymphoma comes back or doesn't respond to chemotherapy.
Kinase inhibitors. Taken once a day, umbralisib (Ukoniq) is a kinase inhibitor. It inhibits multiple kinases. Another kinase inhibitor, copanlisib (Aliquopa), may also be used.
Bispecific antibodies. Mosunetuzumab-axgb (Lunsumio) binds the CD20 and CD3 proteins to help bring the cancer cells and T cells together so that the T-cells can destroy the cancer cells. It is administered through IV.
"CAR-T" therapy, a new form of immunotherapy, may be used for relapsed follicular lymphoma. It involves using specific cells from a person's immune system that have been changed to directly target the cancer cells.
Stem cell transplant. This is used mainly when follicular lymphoma returns. These aren't the "embryonic" stem cells that you may have heard about. They come from either your own stem cells or a donor's bone marrow.
Close relatives, such as your brother or sister, are the best chance for a good match. If that doesn't work out, you need to get on a list of potential donors from strangers. Sometimes the best chance for the right stem cells for you will be from someone who is in the same racial or ethnic background as you.
Before the transplant you will likely need to get treated with high doses of chemo for about a week or two. This can be a tough process because you may get side effects like nausea and mouth sores.
When the high-dose chemo is done, you'll start the transplant. The new stem cells are given to you through an IV. You won't feel any pain from this, and you're awake while it’s happening.
After your transplant, it could take 2 to 6 weeks for the stem cells to multiply and start making new blood cells. During this time you may be in the hospital, or at the very least, will need to make visits every day to get checked by your transplant team. It can take 6 months to a year until the number of normal blood cells in your body gets back to what it should be.
Taking Care of Yourself
It's normal to have mixed feelings: happy that you're not having symptoms or are disease-free after treatment, but worried about what might happen in the future.
Despite the uncertainty, you can have a full life. These tips may help:
Don't try to ignore whatever fears you have. Let yourself feel them and then practice letting them go. Talking about them to a friend or counselor often helps.
Focus on what you can do to be healthy now. Exercise, eat a balanced diet, and make any other changes that would help take better care of yourself. This helps you feel better and have more sense of control.
Spend some peaceful time every day. This can be helpful even if it's just for a few minutes. When you are stressed out, summon up that feeling.
What to Expect
With follicular lymphoma, time is on your side. It grows slowly, and new and better treatments are helping people live disease-free for longer periods of time.
Most people respond well to treatment -- not just the first time, but if it comes back. Stay informed and talk to your doctor about all your treatment options and the clinical trials that might be helpful for you.
The Lymphoma Research Foundation offers many resources on treatments, research advances, clinical trials, and ways to cope with follicular lymphoma. These include one-on-one peer support and financial aid programs.