Diagnosing lymphoma

Tests

If your GP suspects that you have lymphoma, they will feel the lymph nodes in your neck, underarms and groin for swelling. They may also examine your throat, tonsils, neck, chest and abdomen for swelling. Your GP may organise further tests or refer you to a specialist.

Staging

Staging describes how far lymphoma has spread through the body. The tests described in this section help your doctors work out the stage of the lymphoma.

The table below explains the different stages of Hodgkin and non-Hodgkin lymphoma. Knowing the stage helps your doctor work out the best treatment for you.

As well as a number, each stage may be given a letter based on if you have specific symptoms. The letter A means you have no B symptoms, while the letter B means you have the B symptoms.

Stages of lymphoma (Hodgkin and non-Hodgkin)

• stage 1 – One lymph node group is affected. This is either above or below the diaphragm.
• stage 2 – Two or more lymph node groups are affected either above or below the diaphragm.
• stage 3 – Lymph node groups both above and below the diaphragm are affected.
• stage 4 – Lymphoma is in multiple lymph nodes and has spread to other parts of the body (e.g. bone marrow, liver, lungs).

Grades of non-Hodgkin lymphoma

Non-Hodgkin lymphoma is also given a grade, which is based on the look and shape of the cancer cells. The grade describes how quickly the lymphoma is likely to grow and spread. Non-Hodgkin lymphoma is separated into slow-growing (low-grade) and fast-growing (intermediate-grade and high-grade). They are treated in slightly different ways. 

Low-grade (slow-growing)

Doctors may call this indolent lymphoma. Cancer cells look and act much like normal cells and divide slowly. It may cause few symptoms in the beginning because there is little change in the cancer over time. It often doesn’t need to be treated straightaway.

Intermediate grade and high-grade (fast-growing)

Doctors may call this aggressive lymphoma. Cancer cells look and act less like normal cells. It grows much faster than low-grade non-Hodgkin lymphoma and needs to be treated as soon as possible to have the best chance of destroying the cancer and achieving remission.

Risk categories of Hodgkin lymphoma

Your doctor will consider the stage along with the results of blood tests and imaging scans to work out how Hodgkin lymphoma is likely to respond to treatment. This may be called the risk category.

Early-stage Hodgkin lymphoma may be categorised as “favourable” or “unfavourable”.

In unfavourable cases, more treatment may be needed to reduce the risk of relapse (when disease returns after a period of improvement).

The signs of early-stage unfavourable Hodgkin lymphoma can include:

• many affected lymph nodes
• larger lymph nodes (may be called bulky disease)
• inflammation in the blood; having B symptoms.

Advanced Hodgkin lymphoma is generally categorised as high risk.

Prognosis

Prognosis means the expected outcome of a disease. You may wish to discuss your prognosis and treatment options with your haematologist (or medical oncologist if they are your main treating specialist).

It is not possible for anyone to predict the exact course of the disease.

Several factors in assessing your prognosis include:

• your test results
• the type of lymphoma you have
• the stage and grade
• how quickly a tumour is growing
• other factors such as your age, level of fitness and medical history.

You will also have tests throughout your treatment that show how well the treatment is working.

Remission

Most people who are treated for lymphoma (including advanced disease) go into remission after treatment. This means the lymphoma symptoms have decreased or disappeared and there is no evidence of disease on physical examination or imaging tests.

During remission, you will need regular check-ups to ensure that you are still healthy, and the cancer has not returned.

In a small number of cases, lymphoma may not respond to the first treatment. This is known as refractory disease. Sometimes it may come back (relapse or recur) after remission. Find more information about treatment for relapsed lymphoma.

I now understand what they mean by ‘information means control’. Seeking accurate, reliable information was a huge coping strategy for me.

Sonya