Follow-up tests

If long-term side effects occur, they can be physical or psychological. They can happen because of the cancer, its treatment, related illness, an underlying condition or because of a treatment-related complication. Approximately two out of three survivors will have an issue or 'late effect' related to their treatment.

Most issues result from chemotherapy or radiotherapy. They depend on four things:

  • the type of treatment,
  • the site of treatment,
  • the dose of treatment,
  • your child’s age during treatment.

Late effects may include issues with growth and development, heart, lungs , kidney function, hormones and fertility. Any identified late effects monitoring or treatment required for your child will be explained in the follow-up clinic.

At the clinic your child will be regularly weighed and measured to check that they are growing normally. Decreased growth during treatment is common. There is usually a period of ‘catch up’ growth when treatment finishes.

Radiotherapy to the brain may affect the pituitary gland which produces many hormones, including growth hormone. Sometimes a daily injection of artificial growth hormone is needed to help your child grow. Sometimes other hormones are affected, for example, thyroid hormone and cortisol. These can be replaced with medicines.

All children are monitored carefully during follow-up care for signs of puberty. At the follow-up clinic, young people may be asked about normal body changes/puberty and may need to be examined.

  • males - this may be an examination of the testes and penis, pubic, facial and underarm hair growth. This can be done by a male member of staff, if preferred.
  • females - this may be an assessment of the stage of breast development, asking about periods, pubic and underarm hair growth. This can be done by a female member of staff, if preferred

The follow-up teams appreciate this can be embarrassing for young people so they aim to handle this aspect of follow-up in a sensitive and discreet manner. If there appears to be any delay going into puberty, some further investigations will be done. Sometimes, sex hormone therapy may be needed to help start sexual development. If there are problems, they will be referred to an endocrinologist (hormone specialist).

Some chemotherapy drugs and radiotherapy can affect the heart and lungs. If your child had drugs that affect the heart, they will need to have heart ultrasound scans (echocardiogams) during and at the end of treatment and every few years during follow up.

These scans will carry on for the rest of their lives and for young women these will be increased during pregnancy. Careful monitoring is important because there are often no symptoms. Your child will be referred to a Cardiologist (heart specialist) if any problems are found.

Sometimes it is necessary to do lung function tests. These tests involve measuring lung volumes and are easy for a child to do.

Having one kidney does not usually cause any long-term problems, as the remaining kidney can cope alone. Certain drugs can cause kidney problems and if your child received these, they will have had additional kidney tests during treatment. Kidney function will be checked occasionally at follow-up visits, either by a urine sample or a blood test, or both. It is important to have their blood pressure checked; this is usually done routinely at the clinic visit.

After treatment is finished and your child recovers there will be time to think about their future and growing up. This may lead you to think about them having a family of their own. There is a common belief that any cancer treatment causes infertility. This is not true. Many children treated for cancer go on to have their own families. All types of cancer and leukaemia are treated differently and it depends on which treatment each child had and how it will affect their fertility. You will be able to discuss this in more detail with the doctor or nurse specialist in the follow up clinic.

A very small number of children who are cured of cancer can go on to develop another, different, cancer later on in life. There are two main reasons for this. Firstly, some cancer treatments can increase the risk of developing another cancer. Secondly, some families have a special risk of developing certain cancers. This is very rare and any concerns will have been discussed with you if your family is in an ‘at risk’ group. Your doctor or nurse specialist will be able to discuss any worries you have about this.

Our 'Living beyond cancer' information pack has been written by clinical experts to help your child live a healthy life after having cancer as a child, teenager or young adult and includes a guide and specific factsheets on long-term side effects.

  • Reviewed by

    CCLG Late Effects Group and CCLG Information Advisory Group

    With thanks to Dr Heather Borrill, Consultant Clinical Psychologist in Paediatric Oncology at Great North Children’s Hospital in Newcastle Upon Tyne for her input.

    Content last reviewed: November 2022
    Next planned review: November 2025