Low-grade NHL symptoms and diagnosis

Updated 10 Aug 2017

Anyone can be affected by low-grade non-Hodgkin lymphoma (NHL). There are many factors that can lead to low-grade NHL, many of which we can’t control.

There are several symptoms of low-grade NHL, and it’s important to remember that not everyone will get every symptom of the disease – everyone is different.

If your doctor thinks you have low-grade NHL, you’ll have several tests to confirm your diagnosis. It’s important that you understand your diagnosis – it might be a good idea to ask your consultant to write it down so you can use it if you’re looking for more information or support, or you need to tell other people about it.

Low-grade non-Hodgkin lymphoma (NHL) symptoms

Some people who get low-grade NHL will have some of the symptoms listed below. It’s important to remember that not everyone will get all of these symptoms.

Main symptoms

The main symptom of low-grade NHL is having swollen lymph nodes, which causes a lump. You might have heard this being called ‘swollen glands’. Your glands will get bigger quite quickly but won’t necessarily be painful.

The most common place for you to notice these would be in your neck, armpit or groin. In these areas the lymph nodes lie just under the skin, so you’re more likely to notice if they’re swollen.

Sometimes, the affected lymph nodes can be deeper in your body. You may not be able to see the swelling, but you might have other symptoms caused by this. The symptoms you get will depend on where the swollen lymph nodes are in your body, and which organs they’re pressing against.

These symptoms might include:

  • chest or abdominal (stomach area) pain,
  • bone pain,
  • skin lumps, and
  • coughing or breathlessness.

If you have low-grade NHL, you may also have fatigue – this is when you feel tired much of the time. It’s not the same as ordinary tiredness which improves with sleep or rest.

Other symptoms

You might also have some of the following symptoms. Together these are known as ‘B symptoms’:

  • fever (greater than 38°C),
  • drenching night sweats, which soak your nightclothes and bedding (although this symptom is more common in high-grade non-Hodgkin lymphoma), and
  • unexplained weight loss in the last six months (10% or more of your previous weight).

If you get new symptoms after you’ve been diagnosed, or if you feel unwell, contact your hospital as soon as possible.

Watch Dr Robert Marcus, Consultant Haematologist, King's College Hospital, London, talk about symptoms of low-grade NHL.

Low-grade NHL tests and diagnosis

You’ll have a number of tests and scans to confirm whether you have low-grade NHL. These will also show how much the lymphoma has grown and developed – doctors call this ‘staging’ the lymphoma, or they’ll refer to the ‘stage’ of the condition. Doctors will also check your general health.

Sometimes, you might need to prepare before a test. This might include fasting (having nothing to eat or drink except water). Your doctor will tell you what each test will involve and if you need to prepare in any way.

At any time, you can ask your healthcare team to tell you why you’re having a certain test and what the results mean.

Tests to diagnose low-grade NHL

The only way to confirm a diagnosis of low-grade NHL is through a lymph node biopsy.

Lymph node biopsy

A lymph node biopsy is a minor surgical procedure that takes a sample of the lymph node affected by the cancer. This sample is then examined under the microscope in a laboratory.

This test may be done under general anaesthetic. You’ll often have one whole lymph node removed – you might hear this being called an excision biopsy. Increasingly a core of lymph node is removed under local anaesthetic with the help of an ultrasound or CT scan. This is called a core biopsy or incisional biopsy.

This is the definitive test that will confirm your diagnosis of lymphoma. After this test, your lymphoma will be ‘staged’ to understand the extent of the cancer.

Initial health tests

After your diagnosis, you’ll have more tests, which will give doctors more information about your health and the lymphoma.

Blood tests

These will give your healthcare team a full picture of your general health before you start any treatment.

Full blood count

A full blood count (FBC) measures the number of each type of cell in the blood: red cells, white cells and platelets.

Although the full blood count is often not affected in low-grade NHL, the test is still important. The FBC will help doctors spot if you develop anaemia (a condition caused by a lack of red blood cells which can lead to tiredness and breathlessness). Anaemia may occur because of your illness or your treatment. The FBC will also see if the lymphoma has affected your bone marrow and if this happens your treatment might be changed.

Liver function tests

This test checks if your liver is working normally. This is important to know about if you’re having chemotherapy because a lot of drugs are broken down in the liver. If your liver isn’t working normally, your doctor might need to adjust the doses of your treatment drugs.

Urea and electrolytes

This test checks how well your kidneys are working. This will help decide the doses of the drugs you’ll need in your treatment.

The test will also show if you’ve become dehydrated, or if the cancer or the treatment has caused any damage to your kidneys.

You’ll usually have your kidney function checked every time you have an appointment at the hospital.

Infection screening

It’s now normal practice for you to be tested for some viruses that can cause infections.

If you have low-grade NHL, your immune system isn’t working properly, so these viruses may cause serious acute disease. You’ll be tested for hepatitis B, hepatitis C and HIV/AIDS. Your test results might determine which treatments you have – if this is the case, your doctor will discuss this with you.

Cytogenetics

It’s becoming more common for doctors to use special investigations to find out how developed the cancer is. These include molecular cytogenetics and gene sequencing tests.

The test will be done in the lab using your bone marrow sample. These tests look at the genetic abnormalities in the lymphoma cells, which might help determine the treatment you have.

Staging low-grade NHL and risk groups

When you’re first diagnosed, your specialist will carry out tests to allow them to stage, grade and ‘risk score’ the lymphoma.

Staging

Your doctors will want to know the stage of your lymphoma. Staging describes how far the lymphoma has spread and the nature of the lymphoma.

The stage of your lymphoma will affect your doctor’s recommendation about whether you should start treatment immediately and which treatment is right for you.

There’s a standard system which all doctors use to stage low-grade NHL. It’s mainly based on how many areas of your body are affected by the lymphoma. The staging groups are shown in the table below:

Staging for low-grade NHL

Staging is also based on which symptoms you have when you’re diagnosed. This is shown by a letter ‘A’ or ‘B’ – any letter can apply to any of the numbered stages.

A and B symptoms for low-grade NHL

The most important distinction in staging is between disease that hasn’t spread, called early disease (stage I or II disease with no B symptoms), and advanced disease (all other cases). This distinction is important because there are different treatment options for early stage and advanced stage disease.

Grading

Grading is a specific term that's only used to describe follicular lymphoma. Follicular lymphoma is always classed as a low-grade lymphoma, and given a stage accordingly. However, as well as staging, follicular lymphoma is also given a grade from 1 to 3 (with an A or B, as described in the table above).

Grading of follicular lymphoma looks at types of cells called centroblasts (a type of B cell). Grading looks at the affected node, and the proportion of centroblast cells compared with other cells.

These grades can sometimes help doctors see how fast the lymphoma is growing. Groups 1, 2 and 3A are classed as follicular lymphoma.

If you have grade 3B follicular lymphoma, your condition is likely to be treated as a high-grade lymphoma.

Risk scoring

Risk scoring helps your doctor predict how your condition will respond to treatment.

There are a number of guidelines your doctor will use to predict how you’re likely to respond to treatment. These are called the follicular lymphoma indices. They look at several different aspects of your disease, including but not limited to:

  • your age,
  • stage,
  • which lymph nodes are involved,
  • your haemoglobin levels (the levels of iron in your red blood cells),
  • your LDH levels (the levels of a biochemical called lactate dehydrogenase in your blood), and
  • the size of the largest mass of cancer cells (swollen node/s).

You’ll have a series of tests that will help your doctors to find out the stage of the low-grade NHL. These tests will also help doctors predict how you’ll respond to treatment. You’ll have heard of some of these tests, but others might be less familiar. You can always talk to your healthcare team if you have any questions.

Staging tests

 

Bone marrow aspirate and trephine

You may have a bone marrow biopsy (sample) taken soon after diagnosis, to see whether the bone marrow is affected by lymphoma. This may give doctors another opportunity to confirm your diagnosis and gain extra information about the disease.

During the procedure, a small amount of bone marrow is sucked from the hip bone using a fine needle (an aspirate).

Your doctors will then look at the bone marrow sample under a microscope. You don’t need to stay overnight in hospital for a bone marrow biopsy; you can have it as an outpatient using local anaesthetic or entonox (gas and air). It’s usually quite quick but will be uncomfortable while the sample is being taken from your marrow; you can take painkillers if you need to.

You’ll also have a bone marrow trephine. This is taken at the same time as the bone marrow aspirate, and a slightly larger piece of bone marrow is taken from the same site.

You might experience some discomfort around the area where your bone marrow sample was taken. If you’d like, you can take some paracetamol to help with the pain. Any discomfort is usually gone after 24–36 hours.

Scans

Doctors will use scans to help with your diagnosis and staging. These often use a form of radiation, but your healthcare team will always make sure that you’re not exposed to more radiation than is absolutely necessary. It may take a few weeks to get the results of all these tests, which can be a worrying time for many people. It’s really important that doctors take the time to get an accurate diagnosis and stage the lymphoma correctly, as this will determine what treatment you have.

X-rays

X-rays provide good images of the denser tissues in your body, such as bone.

You might have more X-rays during your treatment, to find out how your body is responding and to check for chest infections.

CT scan

CT scans look at your soft tissues (the non-bony parts of your body).

It’s likely that you’ll have a full body CT scan, which gives a detailed picture of your internal organs.

The scan isn’t painful. You’ll lie on a table that moves into a cylindrical tunnel while the pictures are taken. Your body is never completely enclosed and you’ll be able to talk to the person who takes and assesses the images (the radiographer) all the time.

You might need to have a dye injected into one of your veins, to help get a better image. If you’re feeling anxious about this procedure, you may be given a sedative to take beforehand.

Fluorodeoxyglucose positron emission tomography (FDG-PET scan, PET scan or PET/CT scan)

You’ll almost always have a PET scan (or sometimes a combination scan called a PET/CT scan) to help stage the cancer.

PET scans are often combined with CT scans. For this scan, you’ll have an injection that contains radioactive sugar. This small amount of radioactivity is completely safe. Like with CT scans, you’ll lie on a table as you move through a cylindrical tunnel. The scan can take up to three hours, including preparation time.

You’ll get more information and advice about this scan from your hospital.

As the cancerous cells take up more of the radioactive sugar than non-cancerous cells, doctors will be able to measure how much lymphoma is in your body.

You may have this scan again halfway through or at the end of your treatment to see if it’s been successful.

Magnetic resonance imaging (MRI)

An MRI uses the effect of a strong magnet on your body to produce very detailed images of soft tissues, which are then analysed on a computer.

During the test, you’ll lie on a table which will move you through the scanner. To help the computer create a better picture, you might need to have some fluid injected into a vein using a needle.

It’ll take around an hour to carry out the scan. It’s not painful, but the MRI machine is noisy – you might be given headphones so you can listen to music during the scan.

Ultrasound scans

Ultrasound scans can be used to give more information on your condition. For example, it could be used to measure the size of your spleen, which is often enlarged in lymphoma patients.

Special tests

Your doctors will also do several other tests on your blood and/or bone marrow samples. These will help predict how the low-grade NHL might respond to treatment. These are known as prognostic markers.

Serum β2- microglobulin (Sβ2-M)

You’ll have a test that looks at the level of a protein called serum β2-microglobulin (Sβ2- M) in your body. Some patients with NHL will have higher amounts of Sβ2-M than is normal, and this can tell doctors how advanced the low-grade NHL might be.

Lactate dehydrogenase (LDH)

When cells break down, they release a chemical called lactate dehydrogenase (LDH). If you have low-grade NHL, you’ll normally have more LDH in your body because more cells are being produced and more cells are dying. This test can tell doctors how advanced the low-grade NHL might be.

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