Life after diffuse large B-cell lymphoma (DLBCL)
Find out what happens after your treatment programme has finished, and where you can get support for your recovery.
What you need to know:
- You will have follow-up appointments with your hospital team for some time after treatment has finished.
- Ask your hospital team what support you can get while you recover physically and mentally.
- Remember you are protected by equality law at work and as a student, and may be entitled to financial support.
What happens after treatment?
When you have finished treatment, you will have a PET-CT scan to look at how well the treatment has worked.
You will also have blood tests to check on your general health. You may need an MRI scan if you have had treatment for lymphoma in the central nervous system (brain and spinal cord).
Looking at your results, your hospital team will be able to tell if you are in remission (where there is no sign of lymphoma). If there is evidence that you still have lymphoma, you will be offered more treatment.
Follow-up appointments
Once you are in remission, you will have follow-up appointments with your hospital team, fairly regularly to begin with. Over time you will need them less often.
Always contact your hospital team if you notice any changes such as a new swelling. It may not mean a relapse, but it is best to get checked out as soon as possible.
If you stay in remission for the follow-up period, your hospital team will discharge you and transfer your care to your GP. From that point, your GP will be the person to speak to if you notice a new symptom or are worried about anything.
Your hospital team should give your GP a full record of the treatment you have had.
Breast screening after lymphoma
Women who've had radiotherapy to the chest or any areas involving breast tissue for their treatment should be invited for annual breast screening in the future. This is because radiotherapy to the chest increases the risk of breast cancer.
If you had radiotherapy to the chest between the ages of 10 and 35 inclusive, you will be referred onto the NHS Breast Screening Programme Very High Risk Programme.
Annual breast screening following radiotherapy for lymphoma usually starts around 8 to 15 years after treatment. Screening doesn’t start immediately after completion of radiotherapy because the increased risk doesn’t emerge until approximately 10 years later.
Most people who are treated for lymphoma do not go on to develop breast cancer, but it's important to attend any screening appointments you are invited to.
For more information about the very high risk screening programme, see the government's Protocols for the surveillance of women at higher risk of developing breast cancer.
Trans men and non-binary people who have breast tissue and fulfil the criteria for very high risk screening will be invited if they are registered as female or indeterminate with their GP. If they are registered male, they will need to speak to their GP for a referral. Trans women who have breast tissue and fulfil the criteria for very high risk screening will be invited if they are registered female with their GP. For more information, see NHS population screening: information for trans and non-binary people.
The physical and mental impact of treatment
Treatment for DLBCL can be physically tough and you may find some side effects last a while after treatment has finished.
It may take a while to build back up to your former strength. Try to take things step by step and set small goals you can achieve.
On the emotional side, many people are surprised that they don’t feel as happy as they expected after finishing treatment. It may because this is the first chance they have had to stop and think about what they have been through.
It may help to talk to others in a similar situation. Join our online community forum to hear about other people’s experiences and what’s helped them.
If it would help to talk to a mental health professional, ask your hospital team or GP if they can refer you to a counsellor or therapist. In England, you can also refer yourself online.
You also find a private therapist locally through the BACP website.
You can call our Support Service to talk things through, and get advice on where to find the help you need.
Talk to other people affected by blood cancer
Hear from and connect with people who understand.
Looking after yourself
We have general information about living well with or after blood cancer that you might find helpful as you start to get your life back on track.
- Managing fatigue - You may continue to feel extremely tired after treatment. Read what helps people live with fatigue.
- Staying active - Any activity, even a short walk, will help you recover physically and mentally, but remember to pace yourself. Your body has been through a lot. See our ideas for exercise after blood cancer treatment.
- Eating a balanced diet - This will give you the nutrients and energy you need to stay healthy. Read our information about eating well with blood cancer.
- Financial help - Go to our page about money and work for information about your rights, and benefits you may be eligible for as someone recovering from blood cancer.
- Supporting the community - When you are ready, you may be interested in supporting our work, whether that means volunteering for advisory panels, helping to create our health information or taking part in events and challenges. Many people find it gives them a boost to get involved.