Follicular Lymphoma: Understanding Recurrent Disease
Follicular lymphoma is a slow-growing blood cancer that frequently returns after treatment, but newer therapies offer hope for longer periods of remission and better quality of life.
Table of contents
- What is follicular lymphoma
- Understanding grades of follicular lymphoma
- When follicular lymphoma returns
- Signs and symptoms
- How doctors diagnose this condition
- Treatment options for recurrent disease
- Living with recurrent follicular lymphoma
What is follicular lymphoma
Follicular lymphoma is a type of blood cancer that affects white blood cells called lymphocytes, which are cells that help your body fight infections. It belongs to a group of cancers called non-Hodgkin lymphomas, which are cancers that affect the lymphatic system. The lymphatic system includes organs, glands, tube-like vessels, and clusters of cells called lymph nodes that work together as part of your immune system.[1][5]
Follicular lymphoma is the second most common type of non-Hodgkin lymphoma, with about 15,000 to 20,000 new diagnoses in the United States each year.[1] It accounts for approximately 20 to 30 percent of all non-Hodgkin lymphoma cases.[2][4]
This cancer gets its name from the way cancer cells gather in groups called “follicles” inside lymph nodes. These follicles look like the normal structures where infection-fighting white blood cells develop.[3][5] The disease develops from B cells, a specific type of white blood cell that normally makes antibodies to fight infections.[6]
Follicular lymphoma is generally a slow-growing cancer, which doctors describe as indolent. This means it typically develops over months or years rather than weeks or days.[1][2] The cancer can affect lymph nodes, bone marrow, and other organs throughout the body.[1]
- Lymph nodes
- Bone marrow
- Spleen
- Blood
Understanding grades of follicular lymphoma
Doctors classify follicular lymphoma into different grades based on how the cancer cells look under a microscope. The grade helps predict how quickly the disease might grow and guides treatment decisions.[6][12]
To determine the grade, a doctor examines tissue from a lymph node biopsy, which involves removing all or part of a swollen lymph node. A specialist counts the number of large cancer cells and observes how they are arranged.[6]
Follicular lymphoma is divided into grades 1, 2, 3A, and 3B. Grades 1 and 2 are often grouped together and called “follicular lymphoma grade 1-2.” These are considered low-grade lymphomas that usually grow slowly and may not cause many symptoms for a long time.[6][12]
Grade 3A is also a low-grade lymphoma and is typically treated the same way as grades 1 and 2. Grade 3B, however, is considered high-grade lymphoma because it grows more quickly and may require more aggressive treatment similar to fast-growing lymphomas.[6][12]
When follicular lymphoma returns
Follicular lymphoma is generally not considered curable, which means it often returns after treatment. However, many people can live for many years with this condition, and it is increasingly viewed as a chronic disease that can be managed over time.[1][4]
Most people with follicular lymphoma will experience a pattern of the disease going into remission (when the cancer cannot be detected) and then returning, a situation called relapse or recurrent disease. This cycle may happen multiple times over the course of many years.[9][11]
About 20 percent of patients with follicular lymphoma experience disease progression within the first two years after chemotherapy treatment, and these individuals tend to have a poorer outlook.[9] The duration of remission appears to have important prognostic significance. People who relapse within 24 months of chemotherapy or 12 months of rituximab treatment typically face more challenges.[9]
In some cases, follicular lymphoma can transform into a more aggressive type of cancer, most commonly diffuse large B-cell lymphoma. This happens in a small percentage of patients and represents a change in how the cancer behaves, requiring different treatment approaches.[1]
Not all recurrent cases require immediate treatment. If the disease returns but causes no symptoms, doctors may recommend a “watch and wait” approach, also called active surveillance. During this time, healthcare providers monitor the condition closely and only begin treatment when symptoms develop or the disease progresses.[9]
Signs and symptoms
Many people with follicular lymphoma have no symptoms at all when first diagnosed. The disease often grows so slowly that it can be discovered during routine blood work or imaging tests done for other reasons.[4][8]
When symptoms do appear, the most common is painless swelling in the neck, armpit, or groin. This swelling is caused by enlarged lymph nodes and may come and go over time.[1][4][6]
Other symptoms that may develop include:
- Feeling very tired or weak (fatigue)
- Fever without an obvious infection
- Heavy sweating at night that soaks your bedclothes
- Losing weight without trying, especially losing 10 percent or more of your body weight over six months
- Feeling full quickly when eating or abdominal discomfort if lymph nodes or the spleen are enlarged
- Recurring infections due to weakened immune function
Doctors call the combination of fever, night sweats, and significant weight loss “B symptoms.” These symptoms are important to report because they can affect treatment decisions.[6][12]
When follicular lymphoma affects the bone marrow, it can cause additional symptoms. These may include tiredness or breathlessness from low red blood cell counts (anemia), or easy bruising and bleeding from low platelet counts.[6][12]
How doctors diagnose this condition
The only way to confirm a diagnosis of follicular lymphoma is through a biopsy. During this procedure, a doctor removes all or part of a swollen lymph node and sends it to a laboratory where a specialist examines it under a microscope.[1][4][6]
You may also have blood tests as part of the diagnostic process. These tests can check for signs of the disease and assess how well your organs are functioning.[1][6]
Once follicular lymphoma is confirmed, your healthcare provider will order additional tests to determine the stage of the disease. Cancer staging shows how many areas of your body are affected and helps guide treatment decisions. These tests may include:[1]
- PET scans (positron emission tomography) to see where cancer cells are located throughout the body
- CT scans (computed tomography) to create detailed images of lymph nodes and organs
- Bone marrow biopsy to check if cancer cells are present in the bone marrow
Follicular lymphoma stages range from I to IV. Stage I means cancer is found in one or more lymph nodes in a single area. Stage II indicates cancer is in lymph nodes either above or below the diaphragm, which is the band of muscle that separates your chest from your abdomen. Stage III means cancer is in lymph nodes on both sides of the diaphragm. Stage IV indicates cancer has spread beyond the lymph nodes to other organs.[1][10]
Because follicular lymphoma often doesn’t cause symptoms early on, most people have Stage III or IV disease by the time they are diagnosed.[1][10]
Treatment options for recurrent disease
Treatment for recurrent follicular lymphoma depends on several factors, including whether you have symptoms, how long you were in remission, your overall health, and what treatments you received before.[9]
If recurrent follicular lymphoma is not causing symptoms, your doctor may recommend active surveillance. Research shows that treating asymptomatic follicular lymphoma immediately does not improve survival compared to waiting until symptoms develop.[1][10] During this time, your healthcare provider will check on your condition regularly through physical exams and tests.
When treatment becomes necessary, several options are available:
Radiation therapy uses high-energy beams to kill cancer cells. Healthcare providers often use this treatment for early-stage follicular lymphoma that affects only one or two nearby areas. In about half of people with Stage I disease, radiation therapy can send the cancer into long-term remission.[1]
Immunotherapy includes treatments that help your immune system fight cancer. Monoclonal antibody therapy, such as rituximab, is a common type of immunotherapy for follicular lymphoma. These drugs target specific proteins on cancer cells.[4]
Chemotherapy uses drugs to kill cancer cells throughout the body. For follicular lymphoma, chemotherapy is often combined with immunotherapy drugs. This combination is sometimes called chemoimmunotherapy.[9]
Targeted therapies are drugs designed to attack specific features of cancer cells while causing less harm to normal cells.[4]
For people whose disease keeps returning or doesn’t respond to other treatments, more advanced options include:
CAR-T cell therapy is a newer treatment that involves collecting your own immune cells, modifying them in a laboratory to recognize and attack cancer cells, and then returning them to your body.[1]
Stem cell transplant may be considered for some patients with recurrent disease, though this intensive treatment carries significant risks and requires careful evaluation.[8]
Clinical trials offer access to new treatments that are not yet widely available. Your healthcare team can help you determine if participating in a clinical trial might be appropriate for your situation.[4]
Living with recurrent follicular lymphoma
While follicular lymphoma is not currently curable, newer treatments are helping people live longer with this condition. Most people with follicular lymphoma die with it, not from it.[1][10]
The typical survival for people with follicular lymphoma has historically been approximately 8 to 10 years, but research since the introduction of newer immunotherapy drugs has shown further increases in overall survival.[8]
Healthcare providers are hopeful that emerging treatments, particularly newer immunotherapy approaches, may eventually lead to a cure or allow people to live much longer with good quality of life.[1]
Many factors affect individual outcomes, including the grade of the lymphoma, how quickly it responds to treatment, how long remissions last, and your overall health. Your healthcare team can provide information specific to your situation and help you understand what to expect as your disease is monitored and managed over time.