Finishing treatment can bring a sense of uncertainty. You might feel anxious without the routine of frequent hospital appointments with your medical team. You may find this situation easier to manage if you have an idea of what’s coming next.
After finishing treatment for lymphoma, you have an end-of-treatment appointment with your medical team. At this appointment, your consultant or nurse specialist talks to you about your physical, emotional and social needs. They might use questionnaires for this assessment. Your answers help them create a care and support plan that’s specific to your individual needs. You might be given the opportunity to attend a health and wellbeing event, such as a Live your Life workshop, as part of your recovery package.
You should also be given a written treatment summary explaining what treatment you had, any long-term effects it might have, what symptoms of relapse (lymphoma coming back) or late effects to look out for after treatment, and who to contact if you notice them. If you haven’t received a treatment summary, ask for one.
Your team will explain how you will be followed up in the future.
How often you have follow-up appointments depends on:
- the type of lymphoma you’ve had
- the treatment you’ve had
- your response to treatment
- the usual practice in your particular hospital or treatment centre.
Everyone’s situation is different but, in general, you will be seen every 2–3 months when your treatment first ends. After an initial period of follow-up, which varies depending on your individual circumstances and your hospital’s policy, your appointments may become less frequent. In fact, many hospitals are introducing a self-management and remote monitoring system, which means that instead of regular, pre-booked appointments, you arrange your own follow-up appointments as-and-when you feel you need one.
Whether you are on remote monitoring or a traditional follow-up schedule, you can contact your hospital team at any time. Don’t wait until your next appointment if you are worried about your lymphoma.
Questions to ask about follow-up appointments
Below are some of the questions you may wish to ask your specialist about the follow-up process. Most hospitals routinely give out this information. If you haven’t received it, ask for it.
You should have a contact number for your team. If you don’t have it, or you’re not sure which number to use, ask.
- How is follow-up organised?
- What does follow-up involve?
- How can I stay well after my treatment has finished?
- What symptoms of relapse or late effects should I look out for?
- Where can I go for help, support and advice between appointments?
Follow-up is a two-way process. It allows your medical team to check on your progress and it gives you an opportunity to ask any questions or raise any concerns you have about lymphoma and its treatment, including your finances, return to work, immunisations and travel.
Monitoring your recovery
Follow-up appointments aim to monitor your recovery after treatment. You can discuss any ongoing side effects of treatment with your medical team, and how best to manage them. You’ll be asked about your general health and about your physical and emotional wellbeing. As well as carrying out medical checks, your medical team will support you in preparing for the future and living well after your treatment. They can also help you access any emotional or psychological support you need.
Checking for signs of relapse
Follow-up appointments allow your medical team to check for any signs or symptoms that might suggest your lymphoma has relapsed (come back). Although it can be upsetting thinking about potential relapse, talking to your team about it can help you understand what to look for and how to recognise if treatment may be necessary.
If you think your lymphoma might have relapsed, contact your medical team straight away. They may be able to reassure you or, if necessary, they might arrange further tests.
Managing late effects of treatment
Late effects are health problems that can affect you months or even years after you have stopped having treatment. They might be long-term side effects of your treatment or they could be new problems caused by your treatment that develop months or years after finishing treatment.
Follow-up appointments give you an opportunity to discuss how late effects are affecting you or could affect you in the future. Your medical team can refer you to other professionals as appropriate. For example, if your fertility is reduced or you have peripheral neuropathy (nerve damage), you could be referred for specialist help and advice. Your medical team will work with your GP to monitor any late effects in the long-term.
Some people feel anxious in the time leading up to follow-up appointments. It can help to prepare yourself mentally. Talk through your concerns with a friend or family member to help you process your thoughts and to lower your anxiety levels. Remember that if you have no new symptoms, it is unlikely that your lymphoma has returned. You could keep a symptom diary, such as the Macmillan organiser, to help track whether any problems are getting better or worse.
Before your appointment, pay attention to your thoughts and feelings. Write down any concerns or questions you’d like to discuss with your medical team. Remember that appointments are a two-way process and give you an opportunity for a collaborative discussion with your medical team.
There is a lot of information to take in during end-of-treatment meetings and follow-up appointments. You might want to take someone with you to help you remember all your questions and the information your medical team gives you. Don’t be afraid to take notes or ask to record conversations with your consultant or nurse specialist and listen to them later.
At a follow-up appointment, you might see your consultant, clinical nurse specialist, or another member of your medical team.
Your medical team talks to you about how you’re feeling and whether you’ve noticed any change in your symptoms or any new symptoms. They also ask how you are adjusting to life after treatment, especially how you are coping emotionally and whether you feel able to return to the things you used to do before treatment. They can help you access any further support that could be helpful to you.
Your nurse or doctor might:
- take your temperature, pulse and blood pressure
- weigh you
- listen to your heart and lungs
- feel your abdomen (stomach), armpits, groin and neck to check for enlarged lymph nodes or an enlarged liver or spleen
- examine any other areas of your body that were previously affected by lymphoma.
Blood tests can help give your medical team a picture of your overall health. You might not need a blood test. Your medical team will tell you if you do and why. Changes in your blood do not necessarily have anything to do with your lymphoma. Many happen as a normal response to infection or injury. Some changes could prompt your medical team to carry out further tests.
Routine blood tests might include:
- a full blood count
- liver and kidney function tests
- tests to measure markers of inflammation, such as lactate dehydrogenase (LDH), C-reactive protein (CRP) or erythrocyte sedimentation rate (ESR)
- tests to check for abnormal proteins in your blood.
Blood tests can also help detect late effects of lymphoma treatment. For example, if you had radiotherapy to your neck, you will have tests once a year to check how well your thyroid gland is working. If you are at an increased risk of developing heart disease because of your lymphoma treatment, your GP might check your cholesterol levels and blood pressure each year even after your follow-up period is over.
After you finish treatment, you may have a scan to help your doctors assess how well your lymphoma has responded. In most hospitals, scans are not done routinely after this point. Doctors may order a scan if they suspect that your lymphoma could be relapsing.
The length of your follow-up depends on several factors, including:
- your lymphoma type
- the usual practice at your hospital
- your individual situation
- how long it’s been since you’ve finished your treatment
- whether you have been treated as part of a clinical trial.
Hodgkin lymphoma and high-grade non-Hodgkin lymphoma
Most hospitals offer follow-up appointments – pre-booked or patient-triggered – for at least 2 years after you finish treatment. This is an important time in terms of your recovery from treatment and the risk of relapse. Some hospitals offer follow-up for 5 years or longer.
After your follow-up period ends, your GP usually becomes your main point of contact if you have any concerns or notice anything unusual. Your GP will have a record of your diagnosis and all the treatment you’ve had.
Low-grade non-Hodgkin lymphoma
If you’ve had low grade non-Hodgkin lymphoma (sometimes called ‘indolent’ lymphoma), you are likely to be followed-up for the rest of your life. This might be through regular, pre-booked appointments or through a remote monitoring scheme where you arrange your own follow-up appointments as-and-when you feel you need one. Your GP or medical team will still monitor your test results.
Follow-up on maintenance rituximab
If you are having maintenance maintenance rituximab, you will be followed up regularly during the maintenance period. You will be seen less frequently afterwards. Your doctor will advise you on how often this should be.
If you have been treated as part of a clinical trial, you will be followed up according to the trial protocol (which outlines how the trial should run). Clinical trials often monitor long-term health, so follow-up may go on longer for people who are participating in a clinical trial than for those who aren’t.