Follicular lymphoma is a type of non-Hodgkin lymphoma (NHL). NHL is a cancer of the lymphatic system.
Follicular lymphoma develops when the body makes abnormal B lymphocytes. These lymphocytes are a type of white blood cellthat normally helps us fight infections. When you have a lymphoma, the abnormal lymphocytes build up in the lymph nodes or other body organs.
Follicular lymphoma is slow growing and you might not need treatment straight away.
The lymphatic system
The lymphatic system is an important part of our immune system. It has tubes that branch through all parts of the body.
These tubes are called lymph vessels or lymphatic vessels and they carry a colourless liquid called lymph. This liquid circulates around the body tissues. It contains a high number of white blood cells (lymphocytes) which fight infection.
When you have lymphoma, some the white blood cells (lymphocytes) don't work properly.
There are different types of non-Hodgkin lymphoma. The type you have depends on several factors including the type of cell it starts in and how fast growing it is.
There are 2 main types of lymphocytes - B cells and T cells. They both help us fight infections but in slightly different ways.
Follicular lymphoma affects the B cells and so is called a B cell lymphoma.
How common is it?
Follicular lymphoma is the most common type of low grade lymphoma. Each year around 2,600 people are diagnosed with follicular lymphoma in the UK.
Out of all people with NHL, 19out of 100 people (19%) have follicular lymphoma. It mainly affects adults over the age of 60.
The most common symptom is one or more painless swellings in the:
These swellings are enlarged lymph nodes.
General symptoms (B symptoms)
You might have other general symptoms such as:
- heavy sweating at night
- high temperatures that come and go with no obvious cause
- losing a lot of weight (more than one tenth of your weight)
Doctors call this group of symptoms B symptoms. Some people might also have unexplained itching. It is important to tell your doctor about any symptoms like this.
Some people with NHL have these symptoms, but many don't.
See your GP if you have any of these symptoms. They may not be related to lymphoma, but it's important to get checked out.
The main tests are:
- removal of the enlarged lymph node, or taking a sample of tissue from a lymph node (lymph node biopsy)
- blood tests
You have different tests if lymphoma cells are found in the biopsy. You might have different scans and a bone marrow test.
Stages and grades
Doctors put NHL into 2 groups, depending on how quickly they are likely to grow and spread. The 2 groups are:
- low grade (slow growing)
- high grade (fast growing)
Follicular lymphoma is usually slow growing and called a low grade lymphoma.
Doctors might further subdivide follicular lymphoma into 3 grades. These are 1, 2, and 3. Grade 3 is divided into 3A and 3B. Grade describes how the cells look under a microscope. The grade is based on the number of large, follicular lymphoma cells (centroblasts) that they can see.
Grade 1, 2 and 3A are generally thought to be low grade or slow growing. Grade 3B follicular lymphoma is faster growing and is likely to be treated as a high grade lymphoma.
You can ask your doctor about the grade of your follicular lymphoma and what this means for you.
Your stage means the number and position of lymph nodes or other organs affected by lymphoma. Doctors use your stage and grade to plan the best treatment for you.
Your doctors decide about treatment depending on whether you have limited (early) or advanced lymphoma.
Limited stage generally means you have stage 1 or 2 non-Hodgkin lymphoma.
Advanced disease means you have stage 3 or stage 4 lymphoma.
Some people with stage 2 bulky lymphoma might have advanced disease, depending on their circumstances.
Your doctor or specialist nurse can explain your stage, and what this means in your situation.
Treatment for limited disease
You are most likely to have radiotherapy as a treatment for limited disease. You have radiotherapy to the affected lymph nodes. This can help to control the lymphoma for a long time and may cure it.
Some people might not need treatment straight away. You have regular check ups instead. This is called active monitoring or watch and wait.
This might be suitable if all of your lymphoma was removed with your biopsy, and there is no sign of disease elsewhere in the body.
Your doctor might suggest active monitoring if you don't have any symptoms. You would only start treatment when you have symptoms. When the symptoms start, you have the same treatment as someone with advanced disease.
How often you have appointments depends on your situation. So you might have appointments every few months at first. These might become less often if you are well and nothing changes. At your appointment you usually have:
- an examination
- blood tests
Treatment for advanced disease (stage 3 or 4)
The treatment for advanced low grade NHL usually aims to control it for as long as possible, rather than to cure it. Treatment can often control the disease for several years.
The time when the lymphoma disappears is called remission. Remission can last for many years. But second and later remissions are usually shorter than the first remission. You usually have more treatment when the lymphoma comes back.
There are several phases of treatment. These are:
- active monitoring or watch and wait
- first line treatment
- maintenance treatment
- further treatment if your lymphoma comes back
Your doctor might decide not to give treatment if you don't have any symptoms when you are diagnosed. Instead, your doctor monitors you with regular check ups. This is called active monitoring or watch and wait.
Your doctor chooses to do this because you have no symptoms bothering you and your lymphoma can be very slow growing. All treatment has side effects, so doctors don't want to give people treatment they don't need.
There is generally no evidence to show it is helpful to give treatment straight away to people with advanced low grade NHL, if they don't have symptoms.
First line treatment
Your first treatment is called first line treatment.
Your doctor might recommend a drug such as rituximab on its own as a first line treatment. Rituximab is a type of cancer drug called a monoclonal antibody. It helps your immune system to find and kill the lymphoma cells.
You might have this if you have advanced disease with no symptoms. This might delay the need to have chemotherapy and rituximab. Having the 2 treatments together are likely to cause more side effects than rituximab alone.
Your doctor might offer you a combination of treatments if you have symptoms, or if you have very enlarged lymph nodes. You have chemotherapywith rituximab. This combination of chemotherapy and rituximab is called chemoimmunotherapy.
You might have rituximab with one of the following:
- we must have
- a combination of cyclophosphamide, doxorubicin, vincristine and dexamethasone (CHOP)
- a combination of cyclophosphamide, vincristine and prednisolone (CVP)
These are all chemotherapy drugs except dexamethasone and prednisolone, which are steroids. You might haverituximab or chlorambucil tablets if you are fit enough to have a combination of drugs at the same time.
Once you are in remission, you have treatment to try to delay the lymphoma coming back. This is called maintenance treatment. You usually have rituximab every 2 months for up to 2 years.
During the coronavirus (COVID-19) pandemic doctors have been wary of giving maintenance treatment with rituximab. This is because it can lower your immune system and make you more at risk of becoming very ill with COVID-19. They will discuss any possible risks with you and come to a decision that best suits your situation.
If your lymphoma comes back
Follicular lymphoma tends to come back after some time. You need more treatment if this happens. There are lots of options. You might have one of the following:
- a combination of 3 or 4 chemotherapy drugs with rituximab
- R-CVP again if you were in remission for a long time
- a single chemotherapy drug, with or without rituximab
- rituximab on its own
- lenalidomide with rituximab
Your lymphoma might go back into remission after treatment. You may then have rituximab as a maintenance treatment for up to 2 years.
Some people might have a drug similar to rituximab called obinutuzumab. You have this with the chemotherapy drug bendamustine.
Your doctor might suggest joining a clinical trial. Trials might be looking at newer drugs with or without standard treatment.
Or your doctor might recommend more intensive treatment following your second relapse, or a later relapse. You have high dose chemotherapy and a stem cell transplant. You must be fairly fit and well to have this treatment.
Transforming from low grade to high grade
Over time, low grade lymphoma might change into a more aggressive high grade lymphoma. This doesn't happen in everyone. If it does, it might be many years after you were first diagnosed with your lymphoma.
Treatment when a low grade lymphoma transforms is the same treatment as a high grade lymphoma.
This is usually a combination of chemotherapy drugs andyou might also have rituximab. The drugs you have depends on the type of high grade lymphoma you have. You might have a stem cell transplant.
It used to be the case that transformed lymphomas were harder to treat. But treatments are improving for this group of people. This is particularly since the introduction of rituximab and other drugs. Some people can be treated successfully.
After treatment, you have regular follow ups. A doctor will examine you and ask about side effects. You usually have blood tests.
You don't usually have a scan as part of your routine check ups.
Your appointments might be every few months at first. They might become less often if you are well and your disease is stable. Take the opportunity to ask questions. But don't wait for a booked appointment if you have symptoms, or other concerns.
Your medical team will go through what symptoms to look out for, and who to contact.
There is research looking at how best to treat non-Hodgkin lymphoma.
The best person to talk to about your prognosis or outlook is your specialist. Not everyone wants to know.People cope differentlywith their lymphoma and want different information.
Survival depends on many factors. So no one can tell you how long you will live. Your doctor might be able to give you some guide, based on their knowledge and experience.
Coping with follicular lymphoma
It can be very difficult coping with a diagnosis of low grade lymphoma. For many, it is a chronic condition that you live with.
Some people find that a watch and wait approachcan make them feel anxious. Especially when their check up appointment is approaching. Other people are relieved that they don't need treatment just yet. And they can go back to work or on the holiday they had planned.
You might have periods of time when you are in remission and are well. Then times when your lymphoma has relapsed and you need to start treatment again.
It can help to talk to friends and family. Or join a support group to meet people in a similar situation.
Follicular lymphoma is a very slow-growing cancer that may appear in your lymph nodes, your bone marrow and other organs. There are ways to treat follicular lymphoma, but the condition often returns. Healthcare providers are hopeful newer treatments may mean a cure for follicle lymphoma is on the horizon.What is the survival rate of follicular lymphoma? ›
|SEER Stage||5-Year Relative Survival Rate|
|All SEER stages combined||90%|
Follicular lymphoma not usually curable, but it can be treated so you can enjoy a good quality of life. The aim of treatment is to get you into remission (where the amount of lymphoma is significantly reduced). People who have no symptoms may not need treatment for a long time, if at all.Where does follicular lymphoma usually start? ›
Follicular lymphoma begins in the B lymphocytes, typically affecting the lymph nodes, although it may also metastasize to the bone marrow and/or spleen.How did I get follicular lymphoma? ›
Follicular lymphoma develops when the body makes abnormal B lymphocytes. These lymphocytes are a type of white blood cell that normally helps us fight infections. When you have a lymphoma, the abnormal lymphocytes build up in the lymph nodes or other body organs.How aggressive is follicular lymphoma? ›
As many as 30-40% of individuals may experience aggressive transformation of indolent follicular lymphoma. DLBCL can progress rapidly and spread to areas and organs outside of the lymphatic system (extranodal) and the bone marrow. 'B' symptoms are more common in transformed follicular lymphoma.How painful is follicular lymphoma? ›
The main symptom of follicular lymphoma is swollen lymph nodes, which feel like lumps. People often talk about having 'swollen glands'. These won't necessarily be painful.Is follicular lymphoma life threatening? ›
The survival rate for follicular lymphoma at five years (that is, the percentage of patients who will be alive 5 years after diagnosis) is 80-90% and median survival is approximately 10-12 years. People with stage I follicular lymphoma may be able to be cured with radiation therapy.What age does follicular lymphoma start? ›
Follicular lymphoma is the second most frequent non-Hodgkin lymphoma accounting for about 10-20% of all lymphomas in western countries. The median age at diagnosis is 60 years old.How long is chemo for follicular lymphoma? ›
This four-week period is one cycle of therapy. If this regimen were repeated for a total of six cycles, it would take six months to complete. Novel agents — Most people with follicular lymphoma will relapse multiple times and be treated with many available drugs at some point during their disease course.
Despite recent improvements in survival, follicular lymphoma remains an incurable disease, with a median overall survival of ∼14 years.Does lymphoma show up in blood work? ›
Most types of lymphoma can't be diagnosed by a blood test. However, blood tests can help your medical team find out how lymphoma and its treatment are affecting your body. They can also be used to find out more about your general health.What is the most common symptom of follicular lymphoma? ›
Common symptoms of FL include enlargement of the lymph nodes in the neck, underarms, abdomen, or groin, as well as fatigue, shortness of breath, night sweats, and weight loss. Often, patients with FL have no obvious symptoms of the disease at diagnosis.Can COVID trigger follicular lymphoma? ›
There are few case reports about lymphoma remissions after bacterial or virus infections, including recently the COVID-19 infection, suggesting that the infection can trigger de immune system against the tumor cell.What is the most common presentation of follicular lymphoma? ›
The common presentation of patients with follicular lymphoma
Patients with follicular lymphoma typically present with superficial lymph nodes of small to medium size, sometimes unnoticed or neglected by the patients for a prolonged period of time. All common superficial territories can be involved by the disease.
At a median follow-up of 8 years, median overall survival (OS) was 25 years for all patients, 32.6 years for responsive patients compared to 5 years for primary refractory patients (p=<0.0001).Can you live long with follicular lymphoma? ›
Treatment is generally successful, but at some point, the lymphoma usually comes back (relapses) and needs more treatment to keep it under control. It is hard to predict how long it might be before you need more treatment. Most people live with follicular lymphoma for many years.How effective is chemo for follicular lymphoma? ›
Chemotherapy combinations have been the backbone of therapy for follicular lymphoma, and are associated with high initial response rates. Unfortunately, toxicity and secondary malignancies remain concerns, and most advanced-stage patients still relapse within 5 years, regardless of the regimen.