Tests to diagnose and monitor follicular lymphoma

• Most people have several tests and scans to help diagnose follicular lymphoma. These examine how your body is affected by the lymphoma, including whereabouts and how big any lumps are.
• The same tests and scans may also be used to monitor your response to treatment (see how well it’s working.)
• If you don’t need treatment yet, you may still have regular tests to keep an eye on the follicular lymphoma. These tests also help your doctor decide when to start treatment.

The main test for diagnosing follicular lymphoma is a lymph node biopsy. This is a minor surgical procedure which involves taking a sample from one of your lymph nodes (glands).

There are two different types of lymph node biopsy:

If you have an excision biopsy, doctors will remove the whole lymph node. They’ll either numb the area around the node (a local anaesthetic), or give you a general anaesthetic so you fall asleep during the operation.

You will need a few stitches after an excision biopsy, and you may have to stay in hospital for one day. When you’re discharged, you’ll be shown how to care for the wound at home whilst it heals.

If you have a local anaesthetic, you may experience some discomfort during the procedure. Some people say it can hurt, and others describe it as more of a pulling sensation. Ask your doctor or nurse if there’s anything you can do to prepare that will make it more comfortable for you, such as taking paracetamol in advance.

Once your doctor has removed the lymph node, they’ll send it to a lab and look for any evidence of abnormal cells. This will also help to work out what stage and grade of follicular lymphoma you have.

An incision biopsy is where a doctor uses a needle to take out a small piece of tissue from inside a lymph node. You’ll have this done under local anaesthetic, which means the area around the incision will be numbed. Some people do still feel pain or discomfort, but others have said it feels more like pulling or pushing. Most people can attend hospital as an outpatient and go home the same day.

If you’re worried about having an incision biopsy, ask your doctor or nurse if there’s anything you can do to prepare - for example, taking paracetamol before your appointment.

After they’ve taken a sample of tissue, doctors will send it to a lab and look for any signs of abnormal cells. Your hospital team will let you know when your results are ready and how they will contact you.

Blood tests help your doctor get a picture of your overall health, and can also show how well a certain treatment is working.

You’ll have a blood test called a full blood count (FBC) regularly. This looks at:

• the amount of haemoglobin in your blood – this the substance in red blood cells that carries oxygen around the body (Hb)
• the overall number of white blood cells in your blood (WBC)
• the number of platelets in your blood (Plt)
• the number of white blood cells called neutrophils in your blood (Neut)

The letters in brackets are what you may see written on your test results. You can ask your hospital team to go through the results with you and explain what all the figures mean.

Doctors may also check for any evidence of hepatitis B or C or HIV before you start treatment, as these conditions may affect the type of treatment you have.

This test checks if your liver is working properly. It’s especially important to keep an eye on your liver function if you’re having chemotherapy, because a lot of drugs are broken down by the liver. If it isn’t working normally, your doctor may have to stop or adjust the dose of your treatment.

You’ll usually have a liver function test every time you have an appointment at the hospital. Doctors can perform this test from a sample of your blood.

Urea and electrolyte tests show how well your kidneys are working. They can also tell if you’re getting enough fluid or not (whether or not you are dehydrated.) Most people will give their hospital team a sample of their urine (wee), and doctors will use the results to help decide what dose of treatment to give you. They will also check your kidneys haven’t suffered any damage from your treatment.

You’ll have urea and electrolyte tests regularly, usually every time you have an appointment.

Your doctor may want to take a closer look at the genetic information in your cells, which can help to diagnose which exact type of non-Hodgkin lymphoma you have. Cytogenetic tests can also help your doctor decide which treatment to recommend for you.

It is likely that doctors will be able to do cytogenetic testing on a sample from a lymph node biopsy or a blood test. If not, you might need to have a bone marrow biopsy as an outpatient. Read our information about bone marrow biopsies and what to expect from your appointment if this is relevant to you.

X-rays provide doctors with images inside your body, and can be used to check on the health of any dense tissue like bones. They can also help your hospital team see if you have any signs of an infection.

If you need an X-ray, you’ll usually go to hospital as an outpatient. Some people might have a pre-booked appointment to attend, but you may just join a queue on the day.

CT or CAT scans are a bit like X-rays, but they look at the softer parts inside your body. It’s likely that you’ll have a full body scan, which will give doctors a detailed picture of your internal organs and any swollen lymph nodes. This helps them to stage and grade the lymphoma and decide what treatment might be best.

During the scan, you’ll lie on a table that moves through a doughnut shaped machine which takes pictures of your body. The scan isn’t painful, but some people get claustrophobic (scared of small spaces) when having a CT or CAT scan. It might help to know that you are never fully enclosed in the doughnut, and you’ll be able to see and speak to the radiographer (the person who operates the machine and takes the pictures) at all times.

You might also need to have a dye injected into your veins, which helps doctors get a clearer image of what’s going on inside your body. If you’re worried about this, speak to your hospital team. They can explain the procedure and what they’re looking for in more detail.

CT or CAT scans shouldn’t take too long, and you will be able to go home afterwards.

Most people will have a PET scan or PET-CT scan to help stage follicular lymphoma. The scan measures how much lymphoma is in your body, and involves having an injection that contains a tiny amount of radioactive sugar before lying on a table and moving through a doughnut shaped machine.

The amount of radioactive material in the injection is safe for you and most people around you, but if you have any concerns about it, speak to your hospital team. You may be advised to stay away from pregnant people, babies and young children for a short period of time after having a PET scan or PET-CT scan. This is because the radioactive sugar can make you slightly radioactive until the effects have worn off.

PET scans or PET-CT scans can take up to 3 hours including preparation time, and most people will have one as an outpatient and go home the same day. It’s likely you’ll repeat this scan halfway through your treatment, and again at the end to see how well it’s working.

MRI scans use strong magnets and radio waves to produce detailed images of the inside of your body, which can be used by doctors to diagnose and stage follicular lymphoma.

Most people with follicular lymphoma will have a PET scan or PET-CT scan rather than an MRI scan, but if you’re pregnant when you’re getting a diagnosis, your doctor may recommend an MRI scan instead as it doesn’t involve any radioactivity.

MRI scans aren’t painful and take around an hour from start to finish. Some people get claustrophobic (scared of small spaces) when they enter the scanner, which looks like a long tube. It can also be very noisy inside the tube, and you may be given headphones or earplugs. If you have any worries about having an MRI scan, speak to your hospital team.

An ultrasound scan uses a handheld machine called a probe that is placed on your skin and moved about. This gives doctors a good picture of organs inside your body.

You might have an ultrasound scan if doctors need more information to help stage the follicular lymphoma – for example, checking on the size of your spleen, which can be swollen. Ultrasound scans can also be used to find the right place to make a cut or insert a needle during a lymph node biopsy.

This is called a prognostic marker test, and helps your doctor predict how well a certain treatment is likely to work. It is carried out on a sample of your blood or bone marrow, and looks at the level of a protein called beta-2 microglobulin (BM2) in your body.

Some people with follicular lymphoma can have higher amounts of BM2 than usual, which can tell doctors how advanced the disease is.

When cells break down, they release a chemical called lactate dehydrogenase (LDH). If you have lymphoma, you may have more LDH in your body due to the increased number of blood cells being produced and breaking down in your lymphatic system.

Doctors expect to see higher LDH levels in people with high grade non-Hodgkin lymphoma, and lower or normal levels in people with low grade non-Hodgkin lymphomas like follicular lymphoma.

You may not need to have an LDH test, but if you do and your results show a higher level of LDH than normal, it could be a sign that the follicular lymphoma is transforming or behaving more like a high grade non-Hodgkin lymphoma such as diffuse large B-cell lymphoma (DLBCL).