When lymphoma comes back

In a minority of people with Hodgkin and high-grade non-Hodgkin lymphoma (NHL) their disease relapses after treatment; this is most likely to happen within the first two years of remission. Low-grade NHL is less likely to be cured at present so relapse is common, and people with advanced low-grade NHL are likely to relapse more than once during their illness. Relapsed lymphomas can often be treated and people we spoke to were given chemotherapy, radiotherapy, stem cell transplants, or surgery.

When lymphoma relapses it may occur in the same or a different part of the body from where it occurred originally. Symptoms may therefore be the same as before or different and people may or may not realise their significance. People we spoke to who had relapsed commonly developed swollen lymph nodes in their neck, groin or abdomen, and one had a lump on her eyelid. Others had night sweats, weight loss, tiredness, fever, or breathlessness. One had leg pains, another a pain in his arm due to a tumour at the top of his spine, another said he had a kidney problem causing his urine to look like Guinness. One man's relapse had been detected through routine tests during remission before he noticed any symptoms. 

Sometimes when lymphoma relapses it changes from low to high grade. This is called 'transformation'. We talked to a woman who was waiting for a biopsy to find out whether her relapsed tumour had transformed to high grade or was a different type of non-Hodgkin lymphoma altogether. One man had his chemotherapy changed to a more aggressive regimen when it was realised that his tumour had transformed to high grade.

Most of the people whose disease had relapsed had started out with low grade NHL but one man with high grade NHL had also relapsed. Learning that your disease has relapsed can be distressing, and particularly disappointing if it happens soon after treatment finishes. However one man with low grade lymphoma said, 'I wasn't totally surprised when they told me. I wasn't shocked'.

People with Hodgkin lymphoma also sometimes relapsed. One felt irritable and aggrieved that she would have to go through treatment all over again. 

A woman whose Hodgkin lymphoma was originally diagnosed when she was 19 relapsed two years later, and 20 years later she became ill again and was diagnosed with non-Hodgkin lymphoma. 

In February 2008 NICE approved rituximab for treatment of relapsed stage 3 or 4 follicular non-Hodgkin lymphoma, in combination with chemotherapy. For more information about rituximab see 'Immunotherapy'.


Last reviewed February 2016.
Last updated February 2016.


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