There are a number of symptoms you might have before and after you’re diagnosed. Not everyone will get the same ones.
If your GP suspects you might have Hodgkin lymphoma (HL), they’ll refer you to hospital for more tests. You’ll need to have a number of tests and scans to confirm whether you have Hodgkin lymphoma.
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 if you need to tell other people about it.
Watch Shiv give her advice on getting a Hodgkin lymphoma diagnosis
Signs and symptoms
Many of the symptoms you get with Hodgkin lymphoma are similar to symptoms you get for other, less serious illnesses.
The most common symptom of Hodgkin lymphoma is one or more swellings in the neck or above the collar-bone – these are swollen lymph nodes. Usually the enlarged nodes are painless, but in about one in 10 cases they become painful after drinking alcohol.
You might also get swollen lymph nodes in your armpit or groin. However, if you have Hodgkin lymphoma you can get swelling in any of your lymph nodes.
If the affected node is deeper in your body, rather than just beneath the surface of your skin, then the swelling may not be visible. However, you may experience other symptoms, caused by the pressing of this lump against another organ. For example, if you develop Hodgkin lymphoma in your chest you may feel chest pain, a cough or breathlessness. This can sometimes be found during a routine chest X-ray, at a time when you have no other symptoms.
There are three specific symptoms of Hodgkin lymphoma known as B symptoms. Having or not having these can affect which treatment is right for you, because they can show how far the lymphoma has spread. These symptoms are:
You may experience some other symptoms with Hodgkin lymphoma. These are not classed as B symptoms, so they won’t be used as a guide for treatment decisions. These might include:
fatigue (or tiredness)
itching (either widespread or in one place).
Tests and diagnosis
It’s really important to have all these tests and get a clear diagnosis before you start any treatment. At any time, you can ask your healthcare team to tell you why you’re having a certain test and what the results mean.
Watch Dr Chris Hatton about talk about diagnosing Hodgkin lymphoma
Tests to diagnose Hodgkin lymphoma
If your GP suspects you might have Hodgkin lymphoma, they’ll refer you to hospital for more tests. You’ll need to have a number of tests and scans to confirm whether you have Hodgkin lymphoma, including some blood tests and possibly a chest X-ray to look at your general health. It can be a worrying time while you’re waiting for the results of these tests. 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.
Lymph node biopsy
You’ll need a lymph node biopsy to confirm the diagnosis of Hodgkin lymphoma. A biopsy is a minor surgical procedure where a sample of a tissue or organ is taken and examined in the laboratory. Sometimes the whole lymph node is removed; this is called an excision biopsy.
This test is really important in diagnosing Hodgkin lymphoma, because it shows your healthcare team if your sample contains Reed-Sternberg cells – these cells are the defining feature of Hodgkin lymphoma.
You’ll need a small number of stitches after the biopsy, but you can normally go home on the same day and have the stitches removed about a week later by your GP. If the node is easy to reach, the biopsy can be done under local anaesthetic. If the node is deeper in your body, you may need to have the biopsy done under general anaesthetic.
Some people might also have a CT scan to help diagnose Hodgkin 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. The scan won’t cause any pain. You’ll lie on a table that moves into a 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) during the scan. You might need to drink a dye, or have dye injected into one of your veins, to help get a better image. The dye won’t cause you any harm, although it might make you feel a bit unwell for a short time.
Staging describes the extent of a person’s disease. Your healthcare team will use a system based on the numbers I–IV to categorise this.
Staging for Hodgkin lymphoma is based on what symptoms you have and how many sites in your body are affected by lymphoma. The stage will affect what treatment your consultant recommends for you.
For any stage of Hodgkin lymphoma, a letter ‘A’ or a ‘B’ can be added to your diagnosis. These letters indicate whether you have certain symptoms or not. So your diagnosis might be IA or IIB, for example.
Early and advanced Hodgkin lymphoma
Stage IA and IIA are called early stage disease. Stage IIB, III and IV are called advanced disease. The treatment you receive will depend on the stage of the Hodgkin lymphoma.
After you’ve been diagnosed, you’ll have further tests so your healthcare team can find out which areas of your body are affected by Hodgkin lymphoma, and ‘stage’ the disease. Some of these tests need special preparation, like not eating or drinking beforehand. Your healthcare team will tell you about any tests where you may need to prepare in a certain way.
If you didn’t have a CT scan as part of your diagnosis, you may have one afterwards.
PET scan or PET/CT scan
You might hear this called either a PET scan or PET/CT scan, as some scanners do both PET and CT scanning. This scan is used:
after you’re diagnosed, to accurately stage Hodgkin lymphoma and find out which areas of your body are affected
during treatment, to check how you’re responding and assess if you need to change treatments
at the end of your treatment to confirm remission (the absence of active cancer).
Before you’re scanned, you’ll have an injection which contains radioactive sugar. This small amount of radioactivity is quite safe for you. The sugar will help to show up active lymphoma cells on the scan. You’ll be asked to lie on a table as you move through a tunnel. This scan can take up to three hours, including preparation time.
Magnetic resonance imaging (MRI)
This scan shows up soft tissues (non-bony parts) and uses radio waves rather than X-rays. Not everyone will have one, but they can help your team look for affected lymph nodes in soft tissues around your body. You’ll be asked to lie on a table which will move you through the scanner. It isn’t painful but it can take up to an hour to complete and some people find it claustrophobic. As with a CT scan, you might need to have a dye injected into one of your veins to get a better image.
Pregnant women may have an MRI in place of a PET scan, as there is no radioactivity involved in an MRI. You’ll need to remove any metal you’re wearing before an MRI, including jewellery. If you have any metal in your body – for example pacemakers or bone pins – you should tell your radiographer.
You may have a range of other tests, which will help your healthcare team check your general health and assess how well you might respond to certain treatments. These may include:
a full blood count – this measures the amount of each type of blood cell in your blood: red cells, white cells and platelets