ON THIS PAGE: You will read about your child’s medical care after treatment is finished and why this follow-up care is important. To see other pages, use the menu on the side of your screen.
After treatment for neuroblastoma ends, talk with your child’s doctor about developing a follow-up care plan. This plan may include regular physical examinations and medical tests to monitor your child’s recovery for the coming months and years. All children treated for cancer, including neuroblastoma, should have life-long, follow-up care.
The child’s family is encouraged to organize and keep a record of the child’s medical information so that, as the child enters adulthood, he or she has a clear, written history of the diagnosis, the treatment given, and the doctor’s recommendations about the schedule for follow-up care. The doctor’s office can help you compile this. This information will be valuable to doctors who care for your child during his or her lifetime. ASCO offers cancer treatment summary forms to help keep track of the cancer treatment your child received and develop a survivorship care plan once treatment is completed.
After-treatment care for children treated for neuroblastoma includes the following. Always talk with your child’s doctor for more information.
Low-risk or intermediate-risk neuroblastoma. The child is evaluated every three to six months until 24 months after treatment ends, depending on the treatment given, the patient’s age, and other factors. Then, patients are evaluated at least once a year.
High-risk, advanced neuroblastoma. Follow-up care is decided on an individual basis. Tests are performed every few months for two to three years after treatment ends to find out whether the disease has recurred or gotten worse.
Based on the type of treatment the child received, the doctor will determine what examinations and tests are needed to check for long-term side effects and the possibility of secondary cancers. Your child’s doctor can recommend the necessary screening tests. Follow-up care should also address the child’s quality of life, including any developmental or emotional concerns. Learn more about the childhood cancer survivorship. Possible long-term side effects are described below.
Cardiovascular problems. If your child received doxorubicin during chemotherapy, he or she may be at risk for heart problems, including weakening of the heart muscle. The doctor may recommend imaging of the heart with echocardiograms (echo) or other tests, as well as electrocardiograms (ECG or EKG) and blood pressure monitoring. The risk of these problems is related to the total dose of doxorubicin, but is also increased if the child received radiation therapy to the chest.
Hearing problems. If your child has taken cisplatin/carboplatin, hearing loss is a possible side effect. Hearing tests are recommended at the end of treatment, and then once a year if the test results indicate a hearing problem.
Kidney problems. If your child has taken cisplatin or had a bone marrow/stem cell transplantation, the doctor will monitor kidney function by doing specific blood and urine tests as a part of a yearly visit. More tests may be needed if test results indicate a problem.
Hormonal changes. If your child received radiation therapy, his or her primary care doctor will monitor growth and development yearly and evaluate your child for delayed puberty at age 12 (girls) or 14 (boys) through hormone blood tests.
If your child received radiation therapy, the following secondary cancer risks should be considered:
Breast cancer. If your child received total body radiation therapy or radiation therapy to the chest, your child should learn how to do a breast self-examination once he or she reaches puberty and perform them monthly. Regular mammograms may begin in early adulthood, rather than waiting until later.
Skin cancer. You should learn to inspect your child’s skin and ask the doctor to inspect any unusual skin findings at each yearly physical examination.
Other cancers. It is important for children with cancer to receive regular primary medical care. Talk with your child’s doctor if you are concerned about any symptoms, especially if your child has long-lasting pain or a lump in an area that received radiation therapy.
Children who have had cancer can also enhance the quality of their future by following established guidelines for good health into and through adulthood, including not smoking, maintaining a healthy weight, eating a balanced diet, and participating in regular physical activity. Talk with the doctor about developing a plan that is best for your child’s needs. Learn more about the next steps to take in survivorship.
Follow-up care after stem cell transplantation/bone marrow transplantation
Children who have had a bone marrow or stem cell transplantation may have late effects. Late effects of childhood cancer are side effects that can sometimes occur later in life from treatment for cancer as a child. They are called late effects to distinguish them from side effects that occur during treatment or soon after treatment. Possible late effects include:
- Problems with the way the thyroid gland, kidneys, lungs, and heart work
- Problems with growth
- Problems handling infections
- Increased risk of other cancers
- Problems with fertility (ability to have a child) and hormones
- Hearing loss
Because of these possible problems, it is very important for children treated with stem cell transplantation to have certain tests and immunizations once each year. These may include the following evaluations:
- Heart tests (such as an echocardiogram and EKG)
- Lung tests (such as pulmonary function testing, or PFT)
- Blood tests that check the function of the kidneys, liver, and thyroid
- Immunoglobulin levels (such as IgG)
- Hearing tests (if needed)
- Eye examination (if the child received radiation therapy to the head or total body radiation therapy)
- Dental examination
- Blood tests to evaluate hormone levels (such as testosterone, estrogen, and growth hormones)
- If needed, an examination by an endocrinologist (a doctor who specializes in problems with glands and hormones)
- Gynecologic examination for girls
- Immunizations as directed by the health care team
The next section offers a list of questions you may want to ask. Use the menu on the side of your screen to select Questions to Ask the Doctor, or you can select another section, to continue reading this guide.