Late effects: monitoring and follow-up after treatment ends

• effects on the heart
• effects on the lungs
• changes to the mind and memory
• impact on mental health
• effects on the bones
• hormonal effects
• thyroid changes
• second cancer
• fertility problems
• peripheral neuropathy
• effects on the eyes
• fatigue
• chronic GvHD (after a stem cell transplant).

Not everyone will develop late effects after receiving treatment for blood cancer. The risk of developing late effects can depend on factors such as:

• the type and intensity of the treatment you received
• your age at the time of treatment – those treated at a younger age have more time to develop certain late effects throughout their life
• other health conditions you may have
• lifestyle factors such as whether you smoke.

When your treatment comes to an end, your hospital team will complete and send an "End of Treatment Summary" to you and to your GP. This will contain information about your blood cancer diagnosis, the treatment you received and any related health issues you’re currently experiencing. It should also include any general or individual late effects that you may go on to develop as a result of your blood cancer diagnosis and treatment. This may include the possibility of potential second cancers and if so, they should tell you the main symptoms to look out for.

Your End of Treatment Summary will also include a "care plan". This will outline how you will be monitored going forwards to check for signs of the blood cancer returning and keep on top of any late effects that you may develop over the coming months or years. Your care plan will also tell you key contact details you should use if you ever have questions or concerns.

Your End of Treatment Summary may also include advice around looking after your physical health and emotional well-being, as well as offering information around where to access further support.

You will have follow-up appointments for a period of time, after your treatment ends. During these follow-up appointments, your hospital team will check to make sure your blood cancer has not returned, but they will also check for any late effects that you may be developing.

The frequency and duration of your appointments, as well as what they involve (e.g. any tests or scans you might need), will depend on your individual circumstances, including factors such as:

• the type of blood cancer you had
• the treatment you received
• your hospital trust’s usual procedures around follow-up care.

Many hospitals have information on their website about their follow-up care for people treated for cancer. If you aren’t sure what your follow-up care looks like, don’t be afraid to ask your hospital team.

It's important to make your hospital team aware of any symptoms you’re experiencing, and any changes to your general health or anything at all that’s worrying you. You don’t have to wait until your appointments to do this.

If your hospital team thinks you may be developing late effects of blood cancer treatment, you may need to go for further tests or scans to confirm or rule these out.

With regular monitoring, and by knowing the sorts of things to look out for, late effects can be identified more quickly. It’s therefore very important you attend any check-ups and follow-up appointments you may have.

Some healthcare providers offer "patient-initiated follow-up" (PIFU) after treatment has finished for blood cancer. This means you can request an appointment whenever you feel it's needed – based on your symptoms, health concerns, or personal circumstances – rather than have routine follow-up appointments booked in advance.

Your hospital team will speak to you about patient-initiated follow-up if this is something they offer.

If you stay in remission throughout your follow-up period, you will likely be discharged from hospital care to the care of your GP, which means your GP will be your main point of contact for any concerns you have around your health. Your GP should have been given all of the information about your blood cancer diagnosis and the treatment you received, in your End of Treatment Summary.

You may want to book an appointment with your GP when this happens so that you can discuss your End of Treatment Summary together, and so that you can make them aware of any support you may need.

Don’t be afraid to contact your GP if you have any concerns that you’re developing late effects, or if you have any questions at all. It’s really important they’re aware of what you’re experiencing. They can refer you to specialists for any further tests they may feel that you need.

Some people report finding it difficult to arrange an appointment with their GP. If you speak to a receptionist to book your GP appointments, make sure to tell them that you have a history of blood cancer, and you're concerned about symptoms you're experiencing.

Being discharged from your hospital team after treatment and follow-up ends can bring up different feelings for different people. Some people struggle with the idea of not being under the care of a hospital – this is normal. We have a webpage on feelings after finishing treatment for blood cancer, which talks through how you might feel, and where you can go for support.

If you had a stem cell transplant, you’ll likely continue to have follow-up appointments (usually yearly), throughout your life, to check your general health and detect any late effects which may be developing. You may have tests to check your kidney, liver and heart function, as well as tests to check your thyroid and the strength of your bones.

It’s really important you attend these appointments, even if you’re feeling well, or it has been years since your transplant.

If any late effects are identified during your follow-up appointments, you will be referred to other specialist teams.

If you had treatment for blood cancer as a child or before the age of 24, your care may be transferred to a ‘long-term follow-up team’, also known as a ‘late effects’ team, usually around five years after your cancer treatment ends. These will usually be yearly appointments, but this can differ depending on individual circumstances and usual practice within hospitals. This service may be in a different hospital to the one you were treated in, for example, if you were treated in a children’s hospital and you are now an adult. Some of your appointments may even be remote (over the phone or online).

If you have not been offered a late effects service, you can ask for a referral.

The Children and Young People’s Cancer Association (CCLG) has a webpage listing long-term follow-up clinics within the UK - Directory of long-term follow-up clinics | CCLG - The Children & Young People's Cancer Association

It’s important to tell your healthcare teams throughout your life that you were treated for blood cancer as a child or young adult. For example, if you start seeing a new GP, or your GP surgery changes, make sure they’re aware of your history of blood cancer, even if it was many years ago. This can help give a bigger picture of your health for any health professionals that weren’t involved in your cancer care.

What happens at a long-term follow-up clinic?

The tests you are offered at your late effects clinic appointment will depend on the blood cancer and treatment pathway you underwent. They may want to do some basic tests and checks to look at your general health, such as a full blood count, checking your blood pressure, testing your urine sample and recording your weight.

Make sure you flag any health-related concerns you may have, for example, any new symptoms or anything that’s unusual for you. You can also be referred to other specialists, for example, psychological support.

Remember, you don’t have to wait until these appointments to flag anything you’re concerned about.