Long-Term and Late Effects of Treatment
Some side effects of cancer treatment, such as fatigue, can linger for months or years after therapy. These are called long-term effects. Some medical conditions like heart disease and other cancers may not appear until years after treatment ends. These are called late effects. Long-term and late effects can affect your child's physical, mental and cognitive (brain function/learning skills) health.
Treatment for childhood blood cancer may consist of chemotherapy and other drug therapies and may include radiation therapy or allogeneic stem cell transplantation. There are risks for long-term and late effects common to all these treatments, and these may include problems with learning, fatigue, bone or joint pain and an increased risk for developing a secondary cancer.
Some long-term and late effects become evident with maturation (puberty), growth and the normal aging process. Early intervention and healthy lifestyle practices (not smoking, good nutrition, exercise, regular screenings and follow-up) can help lessen any future late effect's occurrence or severity.
Talk with your child's treatment team about possible long-term and late effects. His or her risk for developing long-term or late effects can be influenced by:
- treatment type and duration
- age at the time of treatment
- overall health
Long-term and late effects can affect your child in a number of ways. The range and severity of potential long-term and late effects vary. Some children will have no significant long-term or late effects or very mild effects, and others may have serious complications.
Chemotherapy and Other Drug Therapies
Children treated with chemotherapy, drug therapy or other therapies may be at increased risk for:
- growth delays
- thyroid dysfunction
- infertility, including premature ovarian failure and premature menopause in girls and low testosterone levels and sperm counts in boys
- hearing loss
- bone or joint pain
- secondary cancers, such as acute myeloid leukemia, myelodysplastic syndromes, brain tumors, breast cancer, osteosarcoma (bone cancer)
- heart conditions/damage (chronic heart failure, heart muscle injury)
- lung damage (scarring, inflammation, acute respiratory distress syndrome, lung failure)
- osteoporosis (low bone density)
- peripheral neuropathy
- avascular necrosis of the hip (which could require hip replacement)
Radiation therapy uses ionizing radiation to kill cancer cells. For this reason, some children who have had radiation therapy to the head and neck can develop:
- growth hormone deficiency
- hypothyroidism or hyperthyroidism
- hearing loss
- vision problems such as cataracts or glaucoma
- dental abnormalities
- brain or thyroid cancer
- osteoporosis (low bone density)
Some children who receive radiation to the brain may not reach puberty at the appropriate age. A small percentage experience premature puberty, while in other children puberty is significantly delayed.
Radiation therapy to the chest can cause:
- lung damage (scarring, inflammation, breathing difficulties)
- heart damage (scarring, inflammation, coronary heart disease)
- osteosarcoma (bone cancer)
- breast cancer
- thyroid cancer
- hypothyroidism or hyperthyroidism
Girls (as well as women under age 30) who had radiation to the breast area are at risk for developing breast cancer 15 to 20 years after treatment. Male survivors of childhood cancer are at risk for developing second cancers, but they don't have as high a risk for developing breast cancer as female childhood cancer survivors do.
In boys, radiation therapy to the testes (as is sometimes done in patients with acute lymphoblastic leukemia) or stomach radiation (for advanced Hodgkin lymphoma) may cause fertility problems. In girls, stomach radiation may cause fertility problems including premature ovarian failure or premature menopause. The effect of radiation on the ovaries and testes depends upon age, dosage and location.
Total body irradiation for individuals undergoing a hematopoietic stem cell transplant can potentially cause ovary or testes failure, leading to fertility issues. High-dose radiation to the spleen can increase the risk of developing repeated bacterial infections.
Most childhood survivors of cancer are psychologically healthy. However, some studies have indicated that a small number of childhood leukemia survivors were more likely than healthy peers to report changes in mood, feelings or behavior, including depression and posttraumatic stress disorder.
Learning disabilities can begin during treatment or appear months or years afterward. Areas that can be affected include:
- spatial relationships
- problem solving
- attention span
- information processing
- planning and organizing
- concentration skills
- fine motor coordination, which can cause poor handwriting
Returning to School
Consider educating family members, friends, school personnel and healthcare providers about your child's possible long-term and late effects of treatment. In particular, talk with teachers about your child's needs before he or she returns to school. School personnel may not be aware of the potential for long-term and late effects of treatment.
Work with your child's teachers and healthcare providers to develop a program tailored to his or her needs that features:
- Baseline testing. Baseline testing before treatment, if possible, and continued comparative testing during and after treatment can help identify whether neurocognitive problems or associated learning disabilities have developed.
- Special accommodations. School personnel can take steps to assist your child's return to school, such as allowing him or her more time to complete class work or take exams. Children adversely affected by cancer treatment may qualify for aid under three different federal laws: the Americans with Disabilities Act, the Individuals with Disabilities Education Act and the Rehabilitation Act.
- Long-term planning. Plans can be developed to help a child through certain situations such as transitioning from middle school to high school or going on from high school to secondary education and adult life.
More to Explore
- Returning to school
- The Trish Greene Back to School Program
- Download or order The Leukemia & Lymphoma Society's (LLS's) free booklet Learning & Living with Cancer: Advocating for Your Child's Educational Needs
Researchers are working to improve their understanding of long-term and late effects and to create guidelines for follow-up care. They're also trying to identify biomarkers - high levels of certain substances like antibodies and hormones - that may increase susceptibility to certain effects. By identifying biomarkers, researchers can develop tests to predict effects a patient may be at risk for and allow them to plan treatment accordingly.
What's more, experts are studying how to better understand and treat long-term and late effects in clinical trials. In addition to studying ways to lessen negative impacts of existing therapies, they're seeking to understand how factors like aging and social and economic status influence long-term and late effects. LLS is currently funding an initiative at Children's Hospital of Philadelphia to discover and eliminate the causes of cancer treatment's late effects.
Be Your Child's Advocate
Parents may need to educate other family members, friends, school personnel and healthcare providers about long-term and late effects. Here are some ideas for steps parents can take:
- Talk to your child's doctors and discuss the potential for long-term and late effects, as well as an ongoing plan to evaluate potential effects of treatment.
- Keep a record of physical and emotional symptoms that your child experiences and discuss them with your child's treatment team.
- Make sure that your child's oncology team, primary care providers and specialists - for example, cardiologists, allergists and endocrinologists - are in communication.
- Keep all medical records, including dates and locations of treatment, specific drug and supportive therapies (such as blood transfusions) and doses and specific sites and amounts of radiation therapy, if applicable. Keep copies of blood, marrow and imaging test (MRI, CT scan, X-ray) results.
- Ask your child's doctor for a written summary of the cancer treatment that your child received, including names of all drugs used, whether radiation was used, what type of surgical procedures were performed and whether your child experienced any unusual or especially severe acute complications of cancer therapy.
- Help your child develop and maintain a healthy lifestyle after treatment ends, including appropriate exercise, sun protection, good nutrition and not smoking. Enlist the help of health professionals as needed.
- Keep medical follow-up appointments with the oncology team even if your child is feeling well.