Updated 21 Dec 2018

There are a number of symptoms you might have before and after you’re diagnosed. Not everyone will get the same ones. Many of the symptoms are similar to symptoms you get for other, less serious, illnesses.

Watch Shiv talk about getting a Hodgkin lymphoma diagnosis

Common symptoms

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 for some people they become painful after drinking alcohol.

You might also get swollen lymph nodes in your armpit, groin or any other part of your body. 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 this lump pressing against another organ. For example, if you develop Hodgkin lymphoma in your chest (which is quite common) you may have 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.

B 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 active the lymphoma has become. These symptoms are:

  • fever (38ºC or higher with no evidence of an infection)
  • unexplained weight loss in the last six months (10% or more of your previous weight)
  • drenching night sweats which soak your nightclothes and bedding.

Other symptoms

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. They might include tiredness (fatigue) and itching (either widespread or in one place).

Tests and diagnosis

Tests and diagnosis

It’s really important to have the tests you need to investigate your condition 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.

Tests to diagnose Hodgkin lymphoma

If your GP suspects you might have Hodgkin lymphoma, they’ll refer you to hospital for more tests.

If the lump is in your chest, you may need a different type of biopsy called a mediastinoscopy. Your doctor will pass a thin tube with a tiny camera on the end through a small cut at the base of your neck. This allows them to have a look inside your chest and take a biopsy at the same time. You’ll have a general anaesthetic so you’ll be asleep and won’t feel anything.

Staging

Staging describes how far a person’s disease has spread. Your healthcare team will use a system based on the Roman numbers I to IV to categorise this.

Staging for Hodgkin lymphoma is based on the symptoms you have and how many sites in your body are affected by lymphoma. The treatment you receive will depend on the stage of the Hodgkin lymphoma.

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. Stages I and IIA are called early stage disease. Stages IIB, III(A or B) and IV(A or B) are called advanced disease.

Stage Features
I Only one group of lymph nodes is affected, in one place in your body
II More than one group of nodes is affected but all affected sites are on the same side of the diaphragm - either above or below. The diaphragm is a sheet of muscle separating your chest from your stomach and hip area (abdomen and pelvis).
III Lymph nodes on both sides of the diaphragm are affected, or the lymphoma has spread from the lymph nodes into organs close to the affected node, or nodes.
IV The lymphoma has spread to other organs, such as the lungs, liver or bone marrow.
A No B symptoms (see below)
B B symptoms are present:
  • fever (higher than 38ºC)
  • drenching night sweats
  • unexplained weight loss in the last six months (10% or more of your previous weight).

As well as putting an A or a B after the stage, sometimes an X is added. This describes bulky disease, which means that the lumps caused by the lymphoma are quite large. Whether or not you have bulky disease can be important in deciding which treatment you should have.

Further tests after diagnosis

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 the stage of the disease. You may have the following tests:

  • PET-CT scan to stage the lymphoma, support decisions about your treatment, and confirm that you have no active cancer (you’re in remission) when you’ve finished treatment
  • MRI scan to look for affected lymph nodes in soft tissues (non-bony parts) around your body.

Other tests

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
  • tests on your heart, lungs, kidneys, liver and thyroid (a gland that plays an important part in turning food into energy)
  • tests for HIV and two types of liver disease: hepatitis B and hepatitis C.

Order or download our booklet, Hodgkin lymphoma.

If you’re diagnosed with Hodgkin lymphoma

Your healthcare team

Your hospital will give you the names and contact details of your healthcare team. Get in touch with them if you have any questions you want to ask when you’re not at the hospital.

Remember to tell other healthcare professionals you see – like your dentist or optician – about your diagnosis and any medication you’re taking. They may need to check with your specialist or GP before giving you some types of treatment.

Talking about your diagnosis

Many people find it helpful to talk to someone who’s had the same diagnosis and treatment, or contact a support organisation. You may want to join our online community, or contact our support line.

Staying informed

Take some time to think about how much information you want, when you want it, and how you want it to be given to you. Read our information on finding out more about your condition.

Telling others

It’s entirely up to you who you tell about your illness, but people often find it helpful to keep their loved ones informed. It may also be a good idea to tell someone at work about your diagnosis. See our tips on telling others about blood cancer.

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