If you’re diagnosed with lymphoma there are some symptoms you might have noticed before your diagnosis. It’s important to remember that not everyone will get all, or even any, of these symptoms. Each person is different, and will have a different experience.
- Blood cancer
- Childhood leukaemia
- Acute lymphoblastic leukaemia (ALL)
- Acute myeloid leukaemia (AML)
- Acute promyelocytic leukaemia (APL)
- Chronic lymphocytic leukaemia (CLL)
- Chronic myeloid leukaemia (CML)
- Chronic myelomonocytic leukaemia (CMML)
- Hairy cell leukaemia (HCL)
- Large granular lymphocytic leukaemia (LGLL)
- Plasma cell leukaemia (PCL)
- T-cell acute lymphoblastic leukaemia (T-ALL)
- Other conditions related to blood cancer
Lymphoma symptoms and diagnosis
Signs and symptoms of lymphoma
Because lymphoma is rare and symptoms like these are common, it can sometimes take some time to diagnose.
Once your doctors do suspect lymphoma, they’ll act quickly to make sure you get the tests and treatment you need.
Some symptoms are common across lots of different types of lymphoma. These are listed below – but don’t forget that you won’t necessarily get all of these symptoms.
Swollen lymph nodes
The main symptom of lymphoma 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
- coughing or breathlessness.
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
- unexplained weight loss in the last six months (10% or more of your previous weight).
If you have these symptoms, it might affect what type of treatment you have.
Although these are not classed as B symptoms (so they won’t be used to guide treatment decisions) there are some other symptoms you may experience with lymphoma. These include:
- fatigue – a feeling of extreme tiredness that doesn’t go away after rest or sleep
- itching – either widespread or in one place.
Tests and diagnosis
If your GP suspects you might have lymphoma, they’ll refer you to hospital for tests and scans to confirm whether you have lymphoma or not. You might need to have some tests quite often, like blood tests. Some other tests you’ll only have when you’re diagnosed or if your treatment changes. You might need to have more tests if you develop new symptoms.
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. Sometimes it can take a few weeks before you get your diagnosis. You may feel anxious whilst waiting for your test results, but it’s very important that your doctor takes this time to understand your illness, so that you have the right treatment.
Many patients say that it helps to keep themselves occupied; talk to family and friends, or other people who’ve been through the same thing.
Here are some of the common tests which people have to diagnose lymphoma. You might have more tests to help give doctors more information about the type of lymphoma you have.
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 ultrasound or CT. This is called a core biopsy or incisional biopsy.
Some people might also have a CT scan to help diagnose lymphoma – this is usually done if you have other symptoms as well as lumps. A CT scan is a type of X-ray that produces a detailed picture of the internal organs. It can check if any other lymph nodes are affected and if any lymphatic organs like the spleen are swollen.
Watch Dr Chris Hatton, Consultant Haematologist at Oxford Radcliffe Hospitals NHS Trust, talk about diagnosis for patients with Lymphoma.
You’ll have more tests after you’ve received your diagnosis to help doctors stage the lymphoma. This will give them more information so they can recommend the best treatment for you.
Bone marrow aspirate and trephine
In some cases, your doctor will take a bone marrow sample to see how your blood is working inside your bone marrow. Bone marrow tests provide information about the structure of the marrow and the number and distribution of the different blood cell types – and cancer cells, if present.
Doctors may use body scans to help with your diagnosis and staging. These often use a form of radiation to help take the scan. Your healthcare team will always make sure that you’re not exposed to more radiation than is absolutely necessary.
X-rays, particularly chest X-rays, might be used during diagnosis to help stage the cancer. They 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 infections.
CT scans look at your soft tissues (the non-bony parts of your body). You may have a full body CT scan to help with your staging. The scan gives a detailed picture of your internal organs to help stage the cancer.
Fluorodeoxyglucose positron emission tomography (FDG-PET scan, PET scan or PET/CT scan)
It’s getting more common to have a PET scan (or sometimes a combination scan called a PET/CT scan) to help stage the cancer. For this scan, you’ll have an injection that contains radioactive sugar. As the cancerous cells take up more of the radioactive sugar than non-cancerous cells, doctors will be able to see more clearly where the lymphoma is in your body.
Magnetic resonance imaging (MRI)
Not everyone will have an MRI scan. You might have this scan to see if your central nervous system (brain and spinal cord) has been affected by the cancer. The scan will focus on your head and neck, or your spine. 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.
Ultrasound scans might 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. Ultrasound is also used to help see lymph nodes when performing a biopsy.
You’ll be given a series of blood tests to give your healthcare team a full picture of your general health before beginning your treatment.
Full blood count (FBC)
A full blood count (FBC) measures the number of each type of cell in the blood: red cells, white cells and platelets. You might have been sent for this test by your GP as part of a routine check-up. Other patients might have one when they’re in hospital for something else. The FBC will help doctors spot if you develop anaemia (low haemoglobin in your red blood cells), either because of your illness or your treatment. If you have bone marrow involvement, your blood counts may be low.
Liver function test
This test checks if your liver is working normally. This is important to know when you’re having chemotherapy. This is because lots of drugs are broken down in the liver. If your liver isn’t working normally you might need to adjust the doses of your treatment drugs.
Urea and electrolytes test
This test checks how well your kidneys are working. This may help to decide the doses of the drugs you’ll need in your treatment.
During a lumbar puncture, the doctor will take a small sample of cerebrospinal fluid (CSF). You might need a lumbar puncture if your lymphoma is at a high risk of spreading to your central nervous system (CNS).
It’s becoming more common for doctors to use special investigations to find out how developed the cancer is. Lymphoma is caused by genetic errors. Sometimes this happens on a greater scale, which is easy to see under the microscope. Genes are arranged into structures called chromosomes. We have 46 chromosomes, which can sometimes be broken or rearranged. The hospital team will look to see if this has happened. The study of this is called cytogenetics.
Remember: you might not have all of these tests – your doctor will talk to you about which tests you’ll need to have. For more information on the tests you’ll have to diagnose a specific type of lymphoma, choose a type from the drop down list.
Staging describes the extent of a person’s lymphoma. Staging for lymphoma is based on what symptoms you have, how many sites in your body are affected by lymphoma and your general health at the time you were diagnosed. The stage of the lymphoma will affect what treatment your healthcare team recommend for you.
Staging is usually described using letters and numbers, but exactly how doctors will stage the lymphoma depends on the type of disease you have – choose a specific type of lymphoma from the drop down list to find out more.
Watch Dr Robert Marcus, Consultant Haematologist, King's College Hospital, London, talk about diagnosis and stages for patients with lymphoma.