Childhood Cancer Late Effects: Questions for Follow-Up

This page is for childhood cancer survivors and their parents getting ready for a follow-up visit. It walks through the treatments that raise the risk of late effects, the checks that go with some of them, and the questions to ask.

NCI says late effects are health problems that occur months or years after cancer treatment has ended. They can affect the body and mind, including growth, hormones, thinking, learning and memory, and the risk of second cancers.

NCI says the risk depends on the cancer, the treatment and the survivor. Treatment factors include the type of radiation, the part of the body treated and the dose, and the type, dose and schedule of chemotherapy. So the useful question at a follow-up visit is not only "what cancer did I have." It is "what did I receive, how much, and where."

Ask for a written treatment summary and bring it to every visit. Ask your team which guidelines they use for your follow-up plan.

Anthracyclines are a family of chemotherapy drugs. NCI names doxorubicin, daunorubicin, idarubicin and epirubicin, and mitoxantrone is in a related group. NCI says the risk of heart and blood vessel problems depends on the total dose given and the type of drug. It also depends on whether the child was younger than 13 when treated, and whether a drug called dexrazoxane was given.

Radiation to the chest adds to the risk. NCI says survivors who had both chest radiation and certain chemotherapy are at greatest risk. The unit of radiation dose is the gray, written Gy. Chemotherapy dose is written in milligrams per square meter of body surface, or mg/m².

NCI's health professional summary groups risk by dose:

• Higher risk: anthracycline of 250 mg/m² or more, or chest radiation of 30 Gy or more, or 100 mg/m² or more with 15 Gy or more. Heart screening every 2 years is recommended.
• Moderate risk: anthracycline of 100 to under 250 mg/m², or chest radiation of 15 to under 30 Gy. Screening may be done, about every 5 years.
• Lower risk: anthracycline under 100 mg/m² or chest radiation under 15 Gy. No screening is recommended.

NCI says signs of heart and blood vessel late effects include trouble breathing and chest pain.

Questions worth asking out loud:

• What was my total anthracycline dose in mg/m²?
• Did radiation reach my heart, and at what dose in Gy?
• How often should I have heart tests, and who orders them?

NCI says survivors who had high-dose radiation to the chest have a higher risk of breast cancer. It says certain chemotherapy, including alkylating agents and anthracyclines, also raises the risk. For survivors of childhood Hodgkin lymphoma, the risk by age 50 is comparable to that of people with a BRCA gene change.

For women who had 10 Gy or more to the chest fields, NCI's health professional summary lists:

• Monthly breast self-exam starting at puberty.
• A clinical breast exam every year from puberty until age 25.
• A clinical breast exam every 6 months, with a yearly mammogram and MRI, starting 8 years after radiation or at age 25, whichever is later.

NCI's patient summary says the choice between mammogram and MRI can depend on breast density. Talk to your doctor about when checks should begin. NCI also says anthracycline doses of 250 mg/m² or more are linked to a higher breast cancer risk.

Someone in their twenties may be told they are too young for a breast MRI. Bring your treatment summary and ask your team about the survivor guidelines.

NCI says chemotherapy and radiation can harm the ovaries and testicles. Possible effects include low testosterone, infertility in people born male, and premature ovarian insufficiency in people born female. NCI says the ability to make sperm may come back over time after treatment.

Ask two separate questions. Can I have children? And are my hormone levels normal? Those can have different answers. Ask which blood tests and checks are right for you.

NCI says a low level of growth hormone is a common late effect of radiation to the brain. The higher the dose and the longer the time since treatment, the greater the risk. It can also occur after stem cell transplant or chemotherapy for leukemia. NCI says low growth hormone in childhood results in shorter adult height. If a child's bones have not finished growing, growth hormone replacement may be used, starting one year after treatment ends.

Keep plotting height and weight on a growth chart at every visit. Tell your team if growth slows or stops.

NCI's health professional summary links thinking and learning late effects to these treatments:

• Radiation to the head.
• High-dose methotrexate or cytarabine.
• Chemotherapy given into the spinal fluid.
• Brain or spine surgery.

Risk is higher in children treated at a younger age and in girls. Children with brain tumors or acute lymphoblastic leukemia are most likely to be affected. Late effects can appear months or years after treatment.

Ask whether testing of thinking and learning skills is right for your child. If there are school problems, bring the results to the school team.

NCI names several other exposures worth raising at every visit:

• Cisplatin, high-dose carboplatin, and high doses of radiation to the brain can cause ringing in the ears (tinnitus) or hearing loss months or years later. NCI says to see an audiologist at least once after treatment ends.
• Radiation to the head or neck can cause thyroid problems. It can also cause tooth decay, dry mouth and jaw problems. NCI says doctors suggest a dental check-up, cleaning and fluoride treatment every 6 months.
• Some cancer treatments can cause a different, new cancer many years later. NCI names breast, thyroid, bone, lung, stomach, liver and colorectal cancers, among others.
• NCI says heart and lung damage are among the most common causes of death in survivors, along with the first cancer coming back and second cancers.

Say you are a childhood cancer survivor in the first sentence when you call.

• Call 911 or go to the nearest emergency department for chest pain, sudden severe trouble breathing, fainting, or a heartbeat that races or thumps out of rhythm. Do not drive yourself.
• Call your care team right away for new hearing loss, ringing in the ears, or numbness or tingling after cisplatin or carboplatin.
• If your child is still having chemotherapy, or has low white blood cells, call the care team right away, day or night, for a temperature of 100.4°F (38°C) or higher, chills, a sore throat, mouth sores, burning when urinating, redness at a catheter site, or any other sign of infection. Do this even without a fever. A normal temperature is not a reason to wait.
• Call your care team right away for trouble breathing with activity, or swelling of the ankles or belly. For severe trouble breathing, call 911 or go to the nearest emergency department.
• Call your care team within a day or two for a new lump anywhere, especially in an area that had radiation, growth that slows or stops, periods that stop, or any change in the body that lasts more than a few weeks.

See Late Effects of Childhood Cancer Treatment for the overview and What to Expect at a Survivorship Visit for the appointment itself. Also useful: Childhood Cancer Survivorship, School 504 Plans During Childhood Cancer, and Questions to Ask About Childhood Cancer Treatment.

• Late Effects of Treatment for Childhood Cancer (PDQ), Patient Version, National Cancer Institute
• Late Effects of Treatment for Childhood Cancer (PDQ), Health Professional Version, National Cancer Institute
• Late Effects of Cancer Treatment, National Cancer Institute
• Infection and Neutropenia During Cancer Treatment, National Cancer Institute