After finishing your treatment for lymphoma, you will have regular follow-up appointments. Their aim is to support your recovery and spot lymphoma recurrence early. They are also an opportunity to ask questions and raise concerns. Although you might feel anxious before a follow-up appointment, most people do find them helpful.
Follow-up is a 2-way process. It allows your medical team to check on the progress of your recovery by carrying out physical tests. It also gives you an opportunity to ask about your wellbeing and to raise any concerns related to lymphoma and its treatment, such as your finances, return to work, immunisations and travel.
Monitoring your recovery
Follow-up appointments aim to monitor your recovery from treatment. You’ll have an opportunity to discuss any ongoing side effects of treatment with your medical team who can help you to manage them. You’ll be asked about your general health and about your physical and emotional wellbeing. In addition to carrying out medical checks, your medical team will support you in setting a new routine after your treatment has finished.
Many hospitals now offer an end of treatment summary. The summary records your diagnosis, the tests you’ve had to help make this diagnosis, your treatment and its possible long-term side effects. A copy of the summary is sent to your GP.
Checking for signs of relapse
Follow-up appointments allow your medical team to look into any symptoms that might suggest your lymphoma has relapsed (come back).
If you were treated for high-grade non-Hodgkin lymphoma or Hodgkin lymphoma, relapse is most likely to happen in the first 2 years after your first course of chemotherapy treatment. Relapse becomes less likely after 2 years and the risk continues to fall as time goes on.
It is possible to achieve long-term disease control after treatment for low-grade non-Hodgkin lymphoma. Regular follow-up appointments allow your medical team to spot any signs of lymphoma returning or worsening and to begin treatment as soon as it is needed.
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. They could also be new problems caused by your treatment that develop months or years after finishing treatment.
Your risk of developing late effects depends on a number of factors. These include the treatment you’ve had, your lifestyle (eg smoking) and your general health (any other conditions you have, eg diabetes).
Follow-up appointments give you an opportunity to discuss how late effects are affecting, or could affect you. 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.
As part of their research, health professionals might also gather information about your recovery and any late effects you have. This data could help to improve lymphoma treatments in the future. Your participation in this research is optional and requires your consent.
If you would like support in processing your feelings and emotions after treatment, you might find it helpful to speak to a counsellor. Some people find that counselling brings them a sense of clarity and helps them to find a way forward. Speak to a member of your medical team if you would like to be referred to a counsellor.
End of treatment can bring a sense of uncertainty. You might feel anxious without the routine of hospital appointments and the regular attention of your medical team. You may find this situation easier to manage if you have an idea of what’s coming next.
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, please ask for it.
- How is follow-up organised?
- What does follow-up involve?
- How can I stay well after my treatment has finished?
- What symptoms should I look out for?
- Where can I go for help, support and advice between appointments?
Before a follow-up appointment, pay attention to your thoughts and feelings. Note down any concerns you’d like to discuss with your medical team. You could keep a symptoms diary to help track whether any problems are getting better or worse.
At a follow-up appointment, you might see your consultant, clinical nurse specialist, or another member of your medical team. Follow-up appointments involve conversations and physical tests.
There is a lot of information to take in during end-of-treatment meetings. You might want to take someone with you to help you remember all your questions and the answers you get. You could also ask to record conversations with your consultant or nurse specialist and listen to them later.
Conversations and discussions
You will be asked how you are feeling, what your energy levels are, and whether you feel able to return to the things you used to do before treatment. You will also be asked about your recovery from any side effects of treatment, whether you have any of your initial lymphoma symptoms, and if you have developed any new symptoms.
Your medical team will also be interested in knowing how you are coping emotionally. Your psychological wellbeing is important to your recovery. You might be facing some difficult emotions after cancer treatment. You may find it hard to re-adjust to life after treatment and the changes this might bring to your daily routine and to some of your relationships.
Your medical team might use questionnaires to check your emotional health and to see whether further support could be helpful to you.
Your nurse or doctor might check:
- your weight, temperature, pulse, blood pressure, lung and heart function
- lymph nodes (glands) that can be felt from the outside of your body (in your neck, armpits, groin area) to see if any are enlarged (swollen)
- your abdomen (stomach) to check for any lumps, and to see whether you have an enlarged liver or spleen
- 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 investigations.
Blood tests can help detect late effects. 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.
Depending on your type of lymphoma, blood tests can provide more specific information. For example, chronic lymphocytic leukaemia (CLL) can cause changes to your white blood cells that can be picked up by a blood test. Some lymphomas (such as lymphoplasmacytic lymphoma or Waldenström’s macroglobulinaemia) make abnormal proteins that can also be detected in your blood.
Full blood count
A full blood count (FBC) is a common test to have at follow-up. It measures the numbers and sizes of cells in your blood. Blood cells are made in your bone marrow (the spongy centre in some of our larger bones), so the results can tell doctors how well your bone marrow is working. This is a good measure of your recovery from chemotherapy, particularly in the first few months after treatment.
A biochemical profile measures the concentration of some chemicals in your blood and helps doctors to assess how well your liver and kidneys are working.
Lactate dehydrogenase (LDH) test
You might have a lactate dehydrogenase (LDH) test. LDH is a protein in your blood. The level of LDH can go up as a result of injury or disease; sometimes it increases in people with lymphoma. Raised LDH does not automatically mean that your lymphoma is active. The LDH test is just one of many tests that help the medical team check your health.
Erythrocyte sedimentation rate (ESR)
If you have Hodgkin lymphoma, you might have a blood test called an erythrocyte sedimentation rate (ESR) test. This test helps to detect inflammation in your body, which can be a sign of infection. Your ESR result might be higher if your lymphoma is relapsing, but it can’t be used on its own. Your ESR could be high for reasons unrelated to your lymphoma.
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.
Computed tomography (CT) scans are usually done at the end of treatment. The results are then compared to the results of a scan done before treatment to check your overall response. If an abnormality is picked up, you might have another scan after a period of follow-up. It’s possible that you’ll then have further treatment.
Positron emission tomography (PET) scans are used before and after treatment in some types of lymphoma (eg Hodgkin lymphoma). They can help tell the difference between normal cells and cancer cells. By showing how quickly cells are using up energy, PET scans give an indication of the activity level of cells. Lymphoma cells are usually very active. PET scans can be used to see how well your treatment has worked and to find out if lymphoma has come back (relapsed).
How often you have follow-up appointments depends on:
Everyone’s situation is different and your doctor will see you as often as needed. Ask your medical team to explain their reasoning if you are concerned.
Generally, you will probably be seen once every 2–3 months to start with. Gradually, your appointments will become less frequent. They will go down to once every 3–6 months and eventually down to once a year. The timeframe for this depends on several factors, including the type of lymphoma you’ve had and the usual practice at your hospital.
It is important to know that you can contact your hospital team at any time – you don’t need to wait until your next appointment if you have concerns. Make sure you have the name and number of the best person to call if you are worried about anything. This will usually be your clinical nurse specialist or team secretary.
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 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. However, there is little evidence to suggest that having routine, pre-arranged follow-up appointments increases life expectancy or prevents cancers from coming back. This is why some medical teams are now starting to change the way they follow-up lymphoma people who are well and at low risk of relapse.
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. You may be given the option to be followed up remotely, with your medical team monitoring your test results via your GP. In this case you will be able to book follow-up appointments if you or your team have concerns.
Follow-up on maintenance rituximab
If you are having 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.
Patient-triggered follow-up (PTFU) allows you to schedule your own follow-up appointments. Research suggests that most recurrences of lymphoma are picked up by the person directly affected by it. The idea behind PTFU is that you know your own body best and, with guidance, you will know when you need to be checked out.
PTFU is a new approach and is not offered at all hospitals. It is only appropriate for people who have been in remission for some time and are at low risk of relapse. It can prevent long waiting times for a short clinic appointment where you are told that everything is fine. It also gives you some control over your situation.
If PTFU is available at your hospital, you will usually be invited to a workshop on how to look after yourself. You may then have regular blood tests at your GP surgery and get online access to your records (eg previous clinic letters). You might be asked to participate in self-management courses and information sessions.
You might go through a range of emotions after your treatment has finished. Although you may feel relieved that it is over, you might also feel unsettled and alone without the routine of hospital appointments. You might feel particularly anxious in the time leading up to your follow-up appointment. If you have any worries, questions or concerns, contact your medical team. You can do it before your next appointment.
Our Information and support team are also available if you would like to talk through any concerns. You can get in touch with them by phone, email or live chat. Through our buddy scheme or support groups, they can put you in touch with others who may relate to your situation.