Follow-up care

The aim of follow-up care is to make sure everything is going well and to find out if you have any concerns.

Most people are seen at a clinic by their doctor or nurse. This may be every few months at first. Some people have a follow-up over the telephone with their specialist nurse. If anything needs to be checked they will arrange for you to see your cancer doctor. Some people see their GP for follow-up appointments or for extra support after their treatment.

When you go to the clinic you may be examined and have tests, such as a blood sample. Your doctor or nurse will ask about your recovery and any symptoms.

Write down your questions before your appointment. You can take someone with you for support and to help remember what was said. Tell your doctor or nurse about any on-going or new symptoms, or other health worries. Try to be open with them about how you’re coping with your feelings. They can give you advice or direct you to the right place for support.

Your care after treatment

How often you see your cancer team for follow-up care (check-ups) after treatment depends on different things. This includes the type and stage of the cancer, the treatment you have had and your individual needs. It also depends on the arrangements at the hospital you attend.

Types of follow-up care

There are different types of follow-up care. Most people are followed up at the hospital with their cancer doctor, surgeon or nurse. These are usually every few months in the first year. After the first year, you will have fewer check-ups. You may not need to continue going to the hospital in the future.

Some people may have their follow-up over the telephone with a specialist nurse, instead of going to a clinic. Or you may be asked to contact your healthcare team when you need support or have a new problem or concern. If you are offered this type of follow-up care, always make sure you contact your nurse if you are worried about anything. If you don’t get in touch, they will assume that you are fine. Other people may just see their GP for follow-up appointments.

Your cancer doctor or nurse will usually tell you the type of follow-up care you will have. You may decide together what would be best for your situation.

What you can do

Your cancer team may give you advice on what you can do after treatment finishes. For example, they may suggest doing certain exercises to improve movement, or being more physically active. They may also tell you what symptoms to look out for. 

If you are taking any medicines, for example hormonal therapy, it is important to take it exactly as your cancer team explains. 

Knowing more about your condition and recovery will help you get the most benefit from your treatment. Follow the advice from your cancer team and make it a part of your usual routine. 

Macmillan offers courses and workshops to support you. There are a range of online courses, including HOPE (Help to Overcome Problems Effectively). This is a free, short online course that looks at ways to manage the impact of living with and beyond cancer. 

Your local Macmillan information and support centre, or a cancer support group, can tell you if there are any local courses.

Your follow-up appointment

The aim of your follow-up appointment is to make sure everything is going well and find out if you have any concerns. The appointment helps your doctor or nurse notice any possible problems early on. They may examine you and do some simple tests, such as taking a blood sample. They will usually ask questions about your recovery and any side effects or symptoms you have been experiencing.

If you want more information about your treatment or follow-up care, you can ask for copies of the letters your cancer team sends to your GP. You can also ask for your treatment summary to be sent to you.

It is very important to go to your appointments. If you cannot go because you are not feeling well, tell the clinic. They can arrange another appointment for you.

You may feel worried before an appointment. Going back to hospital can be a difficult reminder of what you have been through. But it can also be a positive reminder that you are getting back to everyday life. People are often reassured after their visit.

Be open and honest with your doctors and nurses. They need information from you to give you the best care.

Your cancer team can refer you to other services if you need specialist help. For example, you may be referred to a psychologist or counsellor for emotional help, or a physiotherapist for advice on exercising.

Tips for getting the most from your appointment

  • Write down your main questions before your appointment. You can also write down the answers when you are there, if it helps you remember them.
  • Take someone with you for support and to help remember what was said.
  • Always let your doctor or nurse know about any on-going or new symptoms, or other health worries. Try to be open and honest with them.
  • Tell them how you are coping with your feelings. They can give you advice or direct you to the right place for support.
  • Let them know about any prescribed or non-prescribed medicines you are taking. This includes vitamins, minerals, or herbal or complementary medicines. Occasionally, these can interfere with other drugs, including some anti-cancer (cytotoxic) treatments.

Nurse-led telephone follow-up

Telephone clinics run by specialist cancer nurses are becoming a more common and effective type of follow-up care. It can help you avoid long journeys and waits in hospital clinics. Having fewer hospital visits may also help some people feel less anxious.

You may have regular appointments when your nurse phones you and asks some questions. Or you may have an arrangement where you contact your nurse if there is anything you are worried about. 

You will still have any regular tests or scans if you need them. If your nurse thinks anything needs to be checked further, they will arrange for you to see your cancer doctor immediately.

This type of follow-up is sometimes called self-management. Your nurse will give you information to help you manage your health. This could include information on:

Self-management allows you to be more in control of your care. But you can always contact your healthcare team for help if you need it.

Your GP

Your GP can offer support during and after treatment. If you have not seen your GP during treatment, it is a good idea to make an appointment with them when it finishes. Your cancer team will send them a report about your treatment. It is always worth telling your GP about any problems you need help with.

Some GPs may have an agreement with the hospital to share your cancer follow-up care after treatment. They may also prescribe some of the drugs you need.

Your GP is responsible for your general health and can give you emotional support. They can also give you advice on:

The GP practice may also be able to support people close to you.

Remember to continue going to any regular checks you usually have at your GP surgery. These may include blood pressure checks or cervical screening for women. It is important to look after your general health.

Back to Care after treatment

Follow-up after myeloma

You will usually have follow-up appointments at the hospital or with your GP during treatment for myeloma and during remission.

Who can help?

Different people and organisations are available to help after treatment for myeloma.

Be aware of symptoms

Ask your doctor or nurse if there are any symptoms you should look out for after treatment finishes.