Late Effects of Childhood Cancer Treatment

This page is for parents of children who have finished cancer treatment, and for survivors. It explains late effects, why they happen, and how follow-up care catches them early.

Late effects are health problems that show up months or years after cancer treatment ends. They come from the same treatment that cured the cancer. This can include chemotherapy, radiation, surgery, or a stem cell transplant. Not every survivor gets a late effect. But knowing what to watch for helps your family catch problems early, when they are easiest to treat.

Cancer treatment targets fast-growing cells. That is how it works against cancer. But a child's healthy tissue is also growing fast. So treatment can affect the heart, lungs, kidneys, bones, brain, and hormone glands. It can affect fertility later in life too. What shows up, and how bad it is, depends on three things:

• The type and location of the cancer.
• The specific drugs and radiation doses used.
• The child's age at the time of treatment.

• Heart. Problems can include a weaker heart muscle or an irregular heartbeat.
• Brain and nervous system. Effects can include trouble with memory or paying attention, and in some cases seizures or loss of coordination.
• Hormones. Effects can include problems with growth, thyroid or pituitary glands, or fertility.
• Other organs. Bone, digestive, lung, and kidney effects are possible too, depending on treatment.
• Second cancers. Some survivors face a higher risk of a second, unrelated cancer later on. This can include leukemia or cancer of the thyroid, breast, lung, or skin.

Survivors of childhood cancer are more likely than their peers to be diagnosed with depression, anxiety, or post-traumatic stress. This is a real late effect, not a personal failing. Bring up mood, sleep, worry, or behavior changes at every follow-up visit. Treat it the same way you would bring up a new cough or headache.

Survivors should have an exam at least once a year. Depending on your child's treatment, this can include heart imaging, hearing tests, memory and learning tests, blood work, or imaging to screen for a second cancer. Mental health screening should be part of this too, not an afterthought. The exact schedule depends on what treatment your child had.

Some late-effect risk comes from treatment your child already received. That part cannot be changed now. But healthy habits still help. Regular exercise, a balanced diet, not smoking, sun protection, and routine medical and dental care all support long-term health. These habits will not undo a treatment-related risk. But they can lower other risks that stack on top of it.

Ask your child's team for a written summary before treatment ends. It should list every chemotherapy drug and dose. It should list any radiation, including the exact dose and the body part treated. It should note any surgery. Keep a copy. It helps every new doctor know what to watch for.

Regular follow-up care is very important for childhood cancer survivors. Ask your child's cancer team where long-term follow-up care is offered, and who will coordinate it.

A few of these need emergency care rather than a phone call. Call 911 or take your child to an emergency department if they have chest pain, faint or collapse, have a racing heartbeat that will not settle, get a sudden severe headache, or have bleeding you cannot stop. Heart damage from earlier treatment can appear years later, so chest pain in a survivor is checked urgently.

Call your child's survivorship team the same day for a new lump, unexplained bruising or bleeding that has settled, breathlessness during ordinary play, or new swelling. Most of the time these turn out to be minor. But because some late effects involve the heart or a second cancer, it is worth checking promptly instead of waiting.

• Can we have a written list of my child's specific late-effect risks, based on their exact treatment?
• What tests are recommended, and how often?
• Which symptoms should prompt a call between visits?
• How will this plan change as my child gets older?

• National Cancer Institute — Late Effects of Treatment for Childhood Cancer (PDQ).