Staging and grading follicular lymphoma

• When you’re diagnosed with follicular lymphoma, your doctor will tell you what stage and grade the lymphoma is. Stages go from numbers 1 to 4, and grades go from numbers 1 to 3.
• The stage and grade you are given will be based on your symptoms and test results, which tell your doctor where in your body the lymphoma is and how developed it is.
• Staging and grading help your doctor to decide whether treatment is needed, and which treatment will be best for you.

Staging describes how much of your body is affected by the lymphoma. There’s a standard system which all doctors use, and it’s important because it helps them to decide what treatment you should have.

Your stage is based on how many places in your body show signs of lymphoma, what symptoms you have, and how large any of the swollen lymph nodes or lumps are.

• Stage 1 - this means that only one group of lymph nodes is affected, in one place in your body.
• Stage 2 - this means that more than one group of nodes is affected, but on the same side of your diaphragm - either above or below it. The diaphragm is a sheet of muscle separating your chest from your stomach and hip area.
• Stage 3 - this either means that lymph nodes on both sides of your diaphragm are affected, or that the lymphoma is also affecting your spleen (an organ in your left rib cage, just above your stomach). If this happens, your spleen may be enlarged.
• Stage 4 - this means that lymphoma cells have appeared in other places outside of your lymphatic system, such as the lungs, liver or bone marrow.

If you have any B symptoms (fever, night sweats and unexplained weight loss), your doctor will tell you your stage followed by the letter ‘B’ – for example, Stage 2B.

If you don’t have any B symptoms, you might see the letter ‘A’ on your notes following your stage – for example, Stage 1A. The letter ‘A’ doesn’t correspond to any symptoms itself, it just means that you don’t have B symptoms.

• Stages 1 or 2 with no B symptoms are described as ‘early stage’ disease.
• Stages 1 and 2 with B symptoms, and stages 3 and 4, are all classed as ‘advanced stage’ disease.

The word “advanced” might sound scary, but it’s important to know that a higher number doesn’t mean your treatment will be less effective. There are different treatment options for early and advanced stage follicular lymphoma, and staging helps your doctor decide which option will be best for you.

If you are worried about your stage or have any questions, speak to your hospital team or call our Support Service.

As well as staging follicular lymphoma, doctors will grade the disease. Grading is another way of measuring how fast the lymphoma is growing, and looks at cells called centroblasts (a type of B lymphocyte).

When you have a blood test or lymph node biopsy, doctors will measure the amount of centroblast cells you have compared to other blood cells. Like staging, this helps them decide on the best treatment to give you.

Grades are numbered from 1 to 3. Grade 3 can be also divided into 3A and 3B (in grading, the A and B aren’t related to symptoms).

• Grades 1, 2 and 3A will be treated as follicular lymphoma.
• Grade 3B will be treated as a high-grade (fast-growing) non-Hodgkin lymphoma.

If you’re told you have grade 3B follicular lymphoma, you might want to read our information on diffuse large B-cell lymphoma (DLBCL).

It can be confusing to keep track of all the different types of non-Hodgkin lymphoma, and some people are told that their follicular lymphoma is behaving like a different type of lymphoma. Follicular lymphoma can also transform (change) into a higher grade non-Hodgkin lymphoma like DLBCL, but this is rare.

If you’re worried about transformation or what will happen in the future, you’re not alone. Our mind and emotions page has lots of tips and ideas about how to cope with anxiety, and you’ll find even more on our online community forum. Ask your doctor if there's anything they can tell you about your own prognosis, and give us a call if you want to talk to someone about how you're feeling.