Symptoms and diagnosis of mantle cell lymphoma

Symptoms depend on the type of mantle cell lymphoma and where it is in your body. As most cases of mantle cell lymphoma grow quickly, there are usually some symptoms. But if you have a slow growing type, you might not have any symptoms at first and the lymphoma may be found through tests for something else.

Some of the most common symptoms of mantle cell lymphoma include:

• Swellings or lumps: These don’t normally hurt and are usually found in the lymph nodes (glands), such as in the armpits, neck or groin.
• B symptoms: This is a group of symptoms that are typically linked to non-Hodgkin lymphoma. They are: drenching night sweats that soak your nightclothes and bedding, a high temperature (fever) and unexplained weight loss (losing weight without trying).
• Swollen spleen: abnormal lymphocytes can often collect in the spleen. This can cause pain in your upper left tummy area (abdomen). You may also feel full after eating a small amount.
• Bowel problems: the lymphoma can affect your bowels and stomach. This can cause symptoms such as stomach pain, diarrhoea, feeling and being sick.
• Unexplained itching: Some people experience an itchy feeling, in one place or all over the body.
• Low blood cell counts: when abnormal lymphocytes build up in the bloodstream or bone marrow, it leaves less space for healthy blood cells. This can lead to symptoms such as:
  • breathlessness, fatigue and dizziness, caused by a low level of red blood cells, which carry oxygen around the body (anaemia)
  • frequent infections, caused by a low level of white blood cells, which are part of your immune system (neutropenia)
  • bruising and bleeding easily, caused by low level of platelets, which help the blood to clot (thrombocytopenia)

If you have any symptoms of blood cancer, you should see your GP. While many of the symptoms can be explained by something else that isn’t cancer, it’s important to see a doctor to rule out blood cancer.

Doctors can use a range of tests to confirm a diagnosis of mantle cell lymphoma and find out what stage the lymphoma is.

The stage of a blood cancer describes how developed it is.

• Stage 1 and stage 2 lymphomas affects lymph nodes (glands) in one or two areas of the body, on one side of your diaphragm – the sheet of muscle that separates your chest from your stomach area. These are classed as early stage.
• Stage 3 and stage 4 lymphomas affect lymph nodes and other organs on both sides of the diaphragm. These are advanced stage lymphoma.

Mantle cell lymphoma can be diagnosed early, but as it often grows quickly it is usually diagnosed at a later stage. Being told you have advanced stage lymphoma is alarming, but knowing the stage of the lymphoma helps your doctor plan the best treatment for you.

You will have tests to diagnose and stage mantle cell lymphoma.

You will probably have a biopsy to confirm a diagnosis of mantle cell lymphoma. A biopsy is when a small sample of tissue is taken to be examined.

Diagnosing classical mantle cell lymphoma usually involves a lymph node biopsy. Doctors take a tissue sample from enlarged lymph node (gland). Most people will also be offered a bone marrow biopsy to stage the lymphoma and see if there are lymphoma cells in the bone marrow.

If doctors think you may have leukaemic non-nodal mantle cell lymphoma, you are likely to have a bone marrow biopsy.

When you have a lymph node biopsy, a doctor inserts a small, fine needle into your lymph node and extracts a small amount of tissue. For a bone marrow biopsy, the sample is taken from your hip bone (pelvis).

Some people find having a biopsy uncomfortable, and some people don’t. The area is numbed beforehand, and a team will be there to provide support and pain relief, as well as answer any questions you have. We have more information about tests to diagnose blood cancer, including bone marrow biopsy.

The tissue sample will be sent to a laboratory, where experts will run a series of tests looking at:

• any genetic changes, such as the t(11;14) mutation
• abnormal lymphocytes, including unusual structures around the mantle zone of the lymph node
• how quickly cells are dividing
• the presence of specific proteins on the surface of cells.

Looking for these things helps to rule out other conditions, confirm the diagnosis and support treatment decisions.

Blood tests help doctors to find the type and stage of mantle cell lymphoma.

A blood test is a quick procedure where a doctor inserts a thin needle into your vein and takes a small amount of blood. Your sample will then be sent to a laboratory for a full blood count (FBC), which will show your levels of red blood cells, white blood cells and platelets, as well as any abnormal lymphocytes.

Blood tests also give information on your general health and how organs such as your liver and kidneys are working. This gives doctors information on where the lymphoma is.

You may have some scans to see where the mantle cell lymphoma is in your body. Scans take images of bones and organs, giving doctors a better picture of what is going on inside your body.

There are various types of scans you might have - some look at specific areas of your body, and some look at your body as a whole. The most common scans used to help diagnose mantle cell lymphoma include:

• CT scan
• PET scan
• MRI scan

We have more information about the different scans to diagnose blood cancer and what they involve.

Doctors might need to do further tests to see if other parts of the body are affected by mantle cell lymphoma. These may include:

• Colonoscopy: a test to check your bowels, where a long, thin tube with a camera on it is passed into your bottom and up through your bowel. The camera shows doctors what’s happening inside your body and doctors can also take a sample of bowel tissue if needed.
• Gastroscopy: a test to check your stomach and digestive tract, where a tube with a camera on the end is passed through your mouth and down your throat to look at your stomach.
• Lumbar puncture: in very few cases, mantle cell lymphoma can spread to your brain and spinal cord. A lumbar puncture involves a small thin needle being inserted into your spine to collect a sample of spinal fluid, which is then analysed to check for any lymphoma cells.