About follicular lymphoma (FL)
FL usually grows slowly and may not cause symptoms for many years. However, it can change into a faster-growing, more aggressive type of lymphoma. This is called transformed FL (t-FL). Transformed FL is harder to treat and is usually considered incurable.
Who gets follicular lymphoma?
FL is the most common type of indolent NHL. It accounts for 15-20% of all lymphoma diagnoses. It occurs more frequently in individuals over the age of 50, with women being diagnosed slightly more often than men.
Causes of follicular lymphoma (FL)
There is no specific cause for FL. There are links between genetic changes and exposure to some viruses and autoimmune disease that can increase your risk of developing FL. These include:
- Genetic changes that develop over time
- Conditions affecting your immune system: Coeliac disease, Sjogren’s syndrome, lupus, rheumatoid arthritis, human immunodeficiency virus (HIV)
- Prior cancer treatment – chemotherapy of radiotherapy
- A family member with lymphoma
Symptoms of follicular lymphoma (FL)
You might not have any symptoms when you’re first diagnosed with FL. Many people find out they have it after a routine blood test. Symptoms of FL are normally experienced as the disease progresses to a more advanced stage.
Some of the common symptoms include:
- Painless swelling in the neck, armpit or groin
- Weight loss without trying
- Fevers without infection
- Tired for no reason
- Drenching night sweats
Diagnosis of follicular lymphoma (FL)
FL is diagnosed with a number of tests. You may have some or all these tests before an accurate diagnosis can be made.
Medical history and physical exam
Your haematologist will check:
- How you’ve been feeling
- Your symptoms and how long you’ve been experiencing them
- Your health history and your family’s health history
You will have a physical exam to check for any swelling or pain. Tell your haematologist if you’ve noticed any changes in your body.
Blood tests
Blood tests are taken:
- At diagnosis (baseline bloods) and throughout treatment.
- To see if FL is affecting your blood cells, electrolytes, or other organs such as the liver or kidneys.
Once you start treatment, future blood test results are compared with your baseline blood test results to see how you are responding to treatment.
Lymph node biopsy
A biopsy is a surgical procedure to remove some tissue from the body for testing. In FL, a lymph node biopsy involves removing part or all of a suspicious lymph node. Depending on the area and how much tissue is taken for the biopsy you may be given local anaesthetic, or it may be performed under a general anaesthetic. The tissue is sent to the laboratory (pathology) for testing. The purpose of a lymph node biopsy is to confirm your diagnosis, identify your subtype of FL, and develop a treatment plan.
Imaging scans
Your haematologist may ask you to have some imaging scans to see if FL is in other parts of your body. These tests might include:
- Chest x-ray
- Computed tomography (CT) scan
- Magnetic resonance imaging (MRI) scan
- Positron emission tomography (PET) scan
These tests can also be used to see how you are responding to treatment. You can read more about these imaging tests in Non-Hodgkin lymphoma (NHL) – A guide for people with NHL
Types of follicular lymphoma
The World Health Organization (WHO) has a system that defines FL subtypes. Your haematologist will use the WHO system to work out your subtype and treatment.
There are 4 subtypes of FL:
- In situ follicular B-cell neoplasm
- Paediatric-type follicular lymphoma
- Duodenal-type follicular lymphoma
- Primary cutaneous follicular center lymphoma
Staging follicular lymphoma
Staging FL describes how far the lymphoma has spread throughout the body. Your stage of FL will depend on:
- How many areas of the body are affected by the lymphoma
- If the lymphoma is above and/or below the diaphragm
- Whether the lymphoma has spread to the bone marrow or other organs.
| Stage 1 lymphoma Lymphoma is only in one lymph node area, or one organ such as the thymus, or one area of a single organ outside the lymphatic system. |
| Stage 2 lymphoma Lymphoma affects two or more lymph node areas either above or below the diaphragm* or extends locally from one lymph node area into a nearby organ. |
| Stage 3 – 4 lymphoma Lymphoma is in lymph node areas on both sides of the diaphragm*(stage 3), or the cancer has spread throughout the body beyond the lymph nodes (stage 4). |
*the diaphragm is a large muscle that separates your stomach and chest.
Prognosis of follicular lymphoma (FL)
A prognosis is an estimate your haematologist will make of the likely course and outcome of your disease. FL is not curable. Because it is slow growing, many people are diagnosed with advanced disease. This can be more difficult to treat. The aim of treatment is to provide disease control and improve quality of life.
Treatment of follicular lymphoma (FL)
Treatment for FL depends on a few factors. Not everyone with FL needs to begin treatment immediately. Factors that are considered when planning treatment include:
- Your age
- Your overall health
- The stage of FL at diagnosis
- Your exact subtype of FL
- Your wishes
Treatment options for FL
Watch and wait
Watch and wait (active observation) involves regular monitoring. This includes blood tests and monitoring your general health. No treatment is needed unless you develop signs and symptoms that the FL is progressing.
Chemotherapy
Chemotherapy (chemo) for FL is often given in combination with immunotherapy.
- Chemo can be given as tablets, injections, or infusions via a drip (IV)
- Chemo is given in cycles of treatment days. This means that you will have treatment for a certain number of days, followed by a set number of rest days
- Chemo cycle times depend on the drugs in your treatment. The number of treatment days and the number of cycles depend on the disease and drugs
- Examples of chemo treatment plans for FL:
- BR – Bendamustine and rituximab
- BO – Bendamustine and obinutuzumab
- R-CHOP – Rituximab, doxorubicin, vincristine, cyclophosphamide, prednisolone
- O-CHOP – Obinutuzumab, doxorubicin, vincristine, cyclophosphamide, prednisolone
Chemo side effects can vary. Read more about the general side effects here: Chemotherapy – Leukaemia Foundation
Immunotherapy
Immunotherapy is a type of biological treatment that helps the immune system recognize and destroy cancer cells. It is often given in combination with chemotherapy.
In follicular lymphoma:
- The cancerous B-cells have a protein called CD20 on their surface
- CD20 is also found on normal B-cells
- When this protein is present, it’s called CD20-positive lymphoma.
Monoclonal anti-CD20 antibody, Rituximab, targets the CD20 protein on B-cells. It works by attaching to the CD20 protein on the surface of the cancerous B-cell. This signals the immune system to destroy the cell, helping to control the cancer.
Radiotherapy
Radiotherapy, also called radiation therapy, is a type of treatment that uses high energy X-rays to kill cancer cells and shrink tumours. Radiotherapy is a local therapy because it only destroys cancer cells in the area it treats. Your FL treatment plan may include radiotherapy, chemotherapy and immunotherapy.
Stem cell transplant
A bone marrow or blood stem cell transplant is a treatment that restores stem cells after high dose chemotherapy. Your treatment team might suggest a transplant if your FL is aggressive, difficult to treat, has relapsed, transformed or is refractory. There are two types of transplants:
- An autologous stem cell transplant – your own stem cells are collected and then given back to you after high dose chemotherapy.
- An allogeneic stem cell transplant – you receive stem cells from a donor, often a blood relative.
Clinical trials
Clinical trials (also called research studies) test new treatments and often provide early access to promising therapies that aren’t routinely available. Results from the new agent (or combination of agents) are compared against current (or standard) treatments to see if the new treatment works better. They also check for side effects from the new treatment. Your haematologist may suggest you join a clinical trial.
Follow-up care
You will need regular checkups with your treatment team once you have commenced treatment for your FL. This is to check on how the FL is tracking and any long-lasting side effects from the treatment. If you notice any symptoms of your FL returning after you commence treatment, you should tell your treatment team as soon as possible. You may need tests if you have symptoms to check the lymphoma isn’t progressing. It is possible you may require a change of treatment to keep the lymphoma under control.
Living with follicular lymphoma (FL)
How FL affects your everyday life will depend on many factors. It could be that you are returning or managing work, trying to exercise or managing your nutrition. There are some helpful resources and information to guide you – Living well with blood cancer. The Online Blood Cancer Support Service – Leukaemia Foundation has learn modules on long term side effects, transition to the new normal, cancer related fatigue and more.
Caring for someone with follicular lymphoma (FL)
We have a range of information and resources that may help when you are caring for someone with follicular lymphoma (FL).
