If non-Hodgkin lymphoma doesn't go away or comes back

Treatment for non-Hodgkin lymphoma (NHL) usually aims to get rid of your lymphoma. If there is no sign of NHL in your tests and scans, doctors call this remission.

NHL can sometimes come back after you have been in remission. Doctors call this a relapse. Some types of NHL are more likely to relapse than other types.

Sometimes NHL doesn't respond to treatment and you don't go into remission. Or treatment stops working. Doctors call this refractory NHL. 

How do I know that my NHL has come back?

You have regular follow up appointments after you finish your first course of treatment. These are to check how you are and whether you have any problems or worries.

After treatment, your doctor will tell you about any symptoms to look out for. They will ask you about these at your appointments, and examine you. You can contact your team between follow up appointments if you have any of these symptoms or you're worried about anything.

If your doctor thinks your NHL might have come back, they will arrange more tests. You might have:

  • blood tests
  • scans
  • another lymph node biopsy Open a glossary item

If the tests show your NHL has come back, the doctor finds out as much as they can about the NHL. They also look at other factors such as what treatment you have had and your general health. They will then decide what the best treatment options are for you.

The aim of further treatment

If your NHL comes back or doesn't respond to treatment, there are usually further treatment options. This depends on:

  • the grade of your lymphoma Open a glossary item
  • the type of NHL
  • the treatment you have already had 
  • your general health  

The aim of treatment might still be to cure it. This depends on your situation.

Even if your lymphoma can't be cured, your doctor can often give you treatment to control it. They might be able to keep you well for long periods at a time. You might not relapse for many years. So there might be long periods of time when you feel well. And then there are other times when you need treatment.

The main treatments

The treatments for relapsed NHL are the same treatments that can be used when it is first diagnosed. Possible treatments include:

  • radiotherapy Open a glossary item
  • chemotherapy Open a glossary item
  • stem cell or bone marrow transplant Open a glossary item
  • targeted cancer drugs Open a glossary item

You might have a combination of these treatments. It might be more intensive treatment than you had at first. 

You might not have treatment straight away if you have a low grade Open a glossary item NHL and it isn't causing troublesome symptoms. Your doctors might recommend active monitoring until you need more treatment. They also call this watch and wait.

Some people with certain types of relapsed NHL might have CAR T-cell therapy. This is a very specialised type of immunotherapy Open a glossary item. This depends on the type of NHL you have and what treatment you have already had. 

If you know what type you have, you can read more about your treatment by selecting your type from the 'types of NHL' menu page. 

If you are worried about your NHL coming back

It is very common to feel anxious about your NHL coming back. It can be difficult to manage worries about any changes or new symptoms. Your doctor will tell you what symptoms to look out for. You can contact them about any new symptoms or concerns.

If you are feeling very anxious, it can also be helpful to find ways to help manage stress and worry.

Coping when your NHL comes back

It can be very hard to cope with the news that your lymphoma has come back, even if your doctor still hopes to cure you. 

If you found the first treatment challenging, it can be very difficult facing further treatment. Talk to your nurse or doctor about how you feel. It might help to have someone with you at your appointment. You can take a list of questions to your appointment so that you remember to ask as much as you need to. Asking questions can help you understand about your lymphoma and treatment options. This may help you to feel more prepared and in control.  

You might want to think about having counselling. A trained counsellor can help you to talk about your fears and worries. And sometimes it feels easier to talk to someone outside your family and friends.

For support and information, you can call the Cancer Research UK information nurses. They can give advice about who can help you and what kind of support is available. Freephone: 0808 800 4040 - Monday to Friday, 9am to 5pm.

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