Late and Long-term Effects of Childhood Cancer Treatment

Bone problems

Certain cancer treatments, like radiation therapy and certain types of chemo, can affect bone growth, especially in kids whose bones are still developing. Radiation to the legs, hips, and spine can cause bone loss that leads to osteoporosis. Methotrexate and steroids, which are commonly used in cancer treatment, can also impact bone growth.

Learning and memory problems

Treatments such as radiation therapy to the head and chemotherapy (like methotrexate and cytarabine) can impact a child’s memory and learning. This can include problems such as difficulty concentrating, remembering information, or learning new skills. Ask your child’s school about what resources are available if your child needs extra support.

Hearing and vision problems

Some chemo (such as cisplatin and carboplatin) can cause hearing loss. Radiation therapy to the head can cause hearing and vision problems. Children who get radiation therapy for retinoblastoma or pituitary gland tumors can have vision problems such as cataracts or dry eyes.

Dental and oral problems

Radiation therapy to the head and neck, as well as certain types of chemo, can cause dental and oral (mouth) problems. This can include dry mouth, gum disease, cavities, or tooth development problems.

Heart problems

Radiation therapy to the chest, lung, or breast area can affect the heart. Some types of chemo (such as doxorubicin and daunorubicin), and less commonly, immunotherapy and targeted drug therapy, can lead to conditions such as heart failure or abnormal heart rhythms.

These problems are often called cardiotoxicities. They don’t usually show up until much later in life, so it’s important for anyone who had childhood cancer to let all their doctors know what treatments they received, even if it was a long time ago.

Lung issues

Radiation therapy to the chest area and certain types of chemo (such as bleomycin, busulfan, carmustine, and lomustine) can harm lung tissue, causing breathing problems later in life.

Second cancers

In rare cases, radiation therapy and high doses of alkylating agents, platinum-based chemo, etoposide, or anthracyclines (such as daunorubicin or doxorubicin) can increase the risk of developing a new cancer later in life. Children who received an autologous stem cell transplant also have an increased risk. The risk of developing a second cancer is highest for the first 10 years after treatment and then continues to decrease over time.

Late and long-term effects of surgery

Some children with cancer have surgery to remove their tumor or to get a central line or feeding tube placed. Long-term effects of surgery will depend on the type of cancer, where it is, and what procedure is done.

Surgery for some types of childhood cancers can have obvious effects on muscle and bone growth in certain parts of the body. This is most likely with cancers that start in bones (such as osteosarcoma or Ewing tumors) or muscles (such as rhabdomyosarcoma).

Some types of surgeries affect younger children more than they do older children or adults because their bodies are still growing and haven’t fully developed yet.

Learn more about the possible long-term or late side effects of surgery for cancer treatment.

Mental health and distress

Anxiety, depression, or other mental distress can happen with any cancer and are common for survivors of childhood cancer. As children get older, anxiety about follow-up appointments or scans (“scanxiety”) and fear of recurrence can cause serious distress, especially as they become teens and young adults.

Survivors of childhood cancers have a higher risk of depression and other mental health problems later in life. It’s important to make sure kids have the support they need. They often struggle with these problems alone, too afraid to talk to someone about them.

Learn more about common types of mental distress in people who have a history of cancer and ways to cope.

Who is at risk for late or long-term effects of childhood cancer treatment?

It’s hard to say who will have late or long-term side effects and who won’t. Most of the time, there isn’t one single reason. It’s more likely a combination of factors, such as:

• The type of cancer
• Age when diagnosed and treated
• The type and dose of cancer treatment
• Any side effects experienced during treatment, and how severe those side effects were
• Any health problems before treatment (known or unknown)
• Ability to follow survivorship recommendations (such as lifestyle habits, cancer screening) after cancer treatment
• Quality of survivorship care (knowledge and skill of the health care team providing cancer survivorship care)
• The level of support from others during and after treatment

How to lower the risk of late side effects

There’s no sure way to eliminate all risk of future late side effects, but there are things you can encourage childhood cancer survivors to do as they get older to lower their risk:

• Don’t use any tobacco products and avoid secondhand smoke.
• Use sunscreen every day, all year.
• Avoid alcohol.
• Don’t use illegal drugs or prescription drugs from others.
• Eat nutritious foods and limit overprocessed foods and sugary drinks.
• Be physically active.
• Get recommended vaccinations, including the HPV vaccine.
• Get regular teeth cleanings and checkups.

Learn more about living well after cancer treatment. These tips will also be helpful as a childhood cancer survivor becomes an adult.

Questions to ask

Here are some questions you might want to ask your child’s cancer care team about late and long-term effects before treatment starts:

• What are the late and long-term effects of this treatment?
• Are any of them likely to be permanent?
• How will these treatments affect puberty, growth, or my child’s ability to have children?
• Can we do anything to prevent late side effects from happening?
• What signs or symptoms should we look out for?
• Who should we call if we notice possible late effects?
• Is there anything we can do or take to prevent or manage long-term side effects?
• Should we see any specialists to watch for certain side effects?
• What is the plan for long-term follow-up care?

It’s normal to worry about side effects, even after treatment has finished. By staying informed, going to regular check-ups, and supporting a healthy lifestyle, you can help your child live a fulfilling life beyond cancer.

Remember that after treatment ends, your child’s cancer care team is still there to support questions that might come up later. They will work with you to schedule follow-up appointments, often as part of a survivorship care plan. One of the goals of survivorship care plans is to prevent and decrease late and long-term side effects.

Learn more about late and long-term effects

Learn more about the possible late and long-term side effects for specific cancers:

• Brain or spinal cord tumors
• Childhood leukemia
• Ewing sarcoma
• Neuroblastoma
• Non-Hodgkin lymphoma
• Retinoblastoma
• Rhabdomyosarcoma
• Wilms tumor