Anyone can be affected by high-grade non-Hodgkin lymphoma (NHL). There are many factors which can lead to high-grade NHL, many of which we can't control.
There are several symptoms of high-grade NHL, and it’s important to remember that not everyone will get every symptom of the disease – each patient is different.
If your doctor thinks you have high-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.
High-grade NHL symptoms
The main symptom of high-grade NHL is having swollen lymph nodes. You might have heard this being called ‘swollen glands’. Your glands will get bigger quite quickly but won’t usually 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 are 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
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 NHL. 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
You’ll have a number of tests and scans to confirm whether you have high-grade NHL. Further tests will show how much the lymphoma has grown and developed – doctors will call this the ‘stage’ or ‘staging’ of the lymphoma. Your general health will be monitored and there’ll be tests to see how you respond to treatment.
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.
Getting your diagnosis
Sometimes people have symptoms that don’t clearly point towards a diagnosis of high-grade NHL. Many people will go to the GP about a lump; sometimes your doctor will ask you to wait to see if it goes down. If it doesn’t, you’ll be referred to a hospital for a biopsy. It might take several weeks for the full results to come back and for you to be given a final diagnosis. This is because it can take a while to analyse the results and your healthcare team will want to check that it is lymphoma, and that you have the right treatment.
You may feel anxious if you’re waiting for a diagnosis. If you’ve got any questions or worries, your healthcare team will be available to talk to you about them.
You’ll have several tests that will help your doctor tell if you have high-grade NHL. It’s getting more common for doctors to look at the genetic information in your cells to give them more information about the type of high-grade NHL you have. That information comes from the lymph node biopsy and bone marrow tests.
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.
This is the test that will confirm your diagnosis of lymphoma. After this test, your lymphoma will be ‘staged’ to understand the extent of the cancer.
Watch Dr Kirit Ardeshna, Consultant Haematologist at University College London Hospitals, talk about the symptoms of high-grade NHL and tests to diagnose it.
Your specialist will carry out tests to stage the high-grade NHL. Staging describes how many sites in your body are affected by lymphoma.
It’s very important that your doctor takes the time to understand what stage of NHL you have. This will make sure that you have the treatment that’s right for you. Any delay at this point won’t change the result of your treatment.
There’s a standard system which all doctors use to stage high-grade NHL. It’s mainly based on how many areas of your body are affected by the lymphoma.
The staging groups and their features are:
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 above.
You might also hear doctors referring to the letters ‘E’ and ‘X’ in your staging – these can give more detail on how your disease is progressing.
E stands for ‘extranodal’, which means when a part of the body is affected outside of the lymph nodes. Primary extranodal NHL is when the lymphoma started in an organ outside of the lymph nodes.
X stands for bulky disease, and is used to describe the NHL if one of your affected lymph nodes is more than 10cm long, and you have a mass in your chest which is bigger than 1/3 of your chest diameter.
Early stage and advanced stage NHL
Early stage disease usually refers to stage I and II disease without bulk or B symptoms. Some patients with early stage disease, especially those with stage I, may be treated differently from those with advanced stage disease.
Advanced stage disease refers to stage III or IV disease, or stage I or II disease with bulk or B symptoms.
Many cases of high-grade NHL tend to be diagnosed in an advanced stage. But it’s important to remember that it’s often a very treatable disease, even at this stage.
Your ‘performance status’ is based on how well you are when you’re diagnosed with high-grade NHL.
The most commonly used scale for rating your performance status is called the ECOG guide:
Grade 0: you’re fully active, and able to carry on more or less as you were before your illness.
Grade 1: you’re unable to do heavy physical work, but can do anything else you were able to do before your illness.
Grade 2: you’re up and about for more than half the day. You can look after yourself, but you’re not well enough to work.
Grade 3: you’re in bed or sitting in a chair for more than half the day. You need help to look after yourself – for example to wash and dress.
Grade 4: you’re not able to get out of bed or a chair, and you need lots of help to look after yourself.
Your doctor will use your performance status to help recommend the best treatment for you. It might, for example, determine if you’re well enough to take part in a clinical trial.
Bone marrow aspirate and trephine
Most patients will have a bone marrow biopsy (sample) soon after diagnosis, to see whether the bone marrow is affected by the lymphoma. This may give doctors another opportunity to confirm your diagnosis and provide more 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.
It’s usually quite quick but might be uncomfortable while the sample is being taken from the marrow; you can take painkillers if you need to.
Some patients will also have a bone marrow trephine. This is similar to a bone marrow aspirate, but a slightly larger piece of bone marrow is taken from the hip bone instead using a larger needle. No sedation is usually needed.
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.
Watch Dr Kirit Ardeshna talk about staging high-grade NHL