Long-term follow-up: information for people who have had treatment for cancer or a blood condition as a child or young adult

Long-term follow-up describes the ongoing check-ups you will need after the treatment you had. It is also known as ‘late effects monitoring’ because it involves monitoring for any health concerns that might arise due to your past treatment.

Chemotherapy, radiotherapy and surgery are important treatments for a variety of cancerous and non-cancerous conditions, and many peoples’ lives are saved as a result. However, there is a chance that some of the treatments you received might cause problems to your health in the future.

The aim of the long-term follow-up is to monitor you regularly. This way we can pick up any potential problems and treat them as early as possible. Or we can refer you to other specialists if necessary.

Most people are referred for long-term follow-up at least five years after their treatment ended. The frequency of your follow-up appointments will depend on the amount and nature of the treatment you had. Usually, they are once a year in the first instance.
It’s important that you attend your follow-up appointments even if you feel well. This is because some problems may develop many years after the original treatment.
 

Please note: We have not been able to offer face-to-face appointments during the COVID-19 pandemic and most of our consultations are currently carried out by telephone or video. You may still need to come to UCLH for some of the tests listed below. But you may be able to have your blood tests at your GP practice.

We plan to return to face-to-face appointments described below in the future.

When you arrive, you will be greeted by our clinic reception team. A healthcare assistant will take some basic observations, such as weight, height and blood pressure, and take your urine sample.
You may need other tests, including:

• A DEXA scan to check bone strength – a test to measure the density of your bones using X-ray
• An echocardiogram (or ‘echo’) to monitor your heart function – a simple and painless scan
• using sound waves to build up a detailed picture of the structure of your heart
• Lung function tests to check how well you can breathe – this will involve blowing into a special machine via a mouth piece
• Blood test.

We will try to arrange these tests on the day of your follow-up appointment, but this may not always be possible.

If you need a blood test, a specialist nurse or doctor will request this electronically during your appointment.

Please telephone us as at least a week before your appointment so that someone else can be booked in your place.

We will contact you in advance to remind you of your appointment, either by text or by phone, so it’s important that we have your current phone number. Please let us know of any other changes in your contact details, including address and GP details.

If you don’t attend an appointment twice without notifying us, or if you cancel your appointment three times in a row, we may need to discharge you back to your GP. Your GP will have to refer you again if you need to see us in the future.
 

If you need to see a number of different specialists, you can attend the late effects multidisciplinary (MDT) clinic.

Doctors and nurses in this clinic come from different specialities, including cancer and blood conditions, endocrine, renal, and gynaecology and reproductive health. This means that you will be able to see the specialists you need in one afternoon, without having to make multiple trips to the hospital.
 

If you have any health concerns, please visit your GP. If your concerns are related to your past treatment, you can contact the long-term follow-up team as well.

Late effects coordinator

• Tel: 020 3447 5536
• Email: uclh.late.effects@nhs.net

The late effects coordinator can help with appointments and arranging tests. If you have a medical query, they will pass it on to one of the clinical nurse specialists (CNSs) and your consultant.