Children Diagnosed With Cancer: Late Effects of Cancer Treatment
When a child is diagnosed with cancer, families and parents will need to know about and cope with many problems.
What are late effects?
Today, because of advances in treatment, about 8 out of 10 children treated for cancer survive at least 5 years, and most of these children are cured. But the treatments that help these children survive their cancer can also cause health problems later on.
Most treatment side effects appear during or just after treatment and go away a short time later. But some problems may not go away or may not show up until months or years after treatment. These problems are called late effects. Because more children with cancer are now surviving into adulthood, their long-term health and these late effects have become a focus of care and research.
Just as the treatment of childhood cancer requires a very specialized approach, so does aftercare and watching for late effects. Late effects can involve more than one part of the body (or more than one organ system) and can range from mild to severe.
Careful follow-up after cancer treatment allows doctors to find and treat any late effects as early as possible. The follow-up schedule depends on many things, including the type of cancer the child had, the treatments used, and the risk of late effects from those treatments.
Who is at risk for late effects?
Each child getting cancer treatment is unique. The treatments used vary from child to child and from one type of cancer to another. Late effects will also vary, and depend mostly on the type of treatment used and the doses given. Other things that can affect a child's risk include:
The type of cancer
Where the cancer was in the body
How old the child was when treated
The child's overall health before the cancer
The child's genetic make-up (inherited risk for certain health problems)
What causes late effects?
Late effects are caused by the damage that cancer treatment causes to healthy cells in the body. Most late effects are caused by chemotherapy or radiation. Major surgery may also lead to late effects.
Cancer treatments like radiation therapy, chemotherapy, or stem cell transplants kill cells that grow quickly, such as cancer cells. But in a child, many healthy cells in organs throughout the body are growing fast, too. Treatment can damage these cells and keep them from growing and developing the way they should. Sometimes the damage from treatment isn't serious enough to cause problems that are noticed right away, but they may show up over time.
Chemotherapy (chemo) is the use of drugs to kill cancer cells. But chemo drugs can damage normal cells, too, which can cause short-term and long-term side effects. These side effects depend on the type and dose of drugs, as well as how often and how long they are given. For example, side effects are likely to be more severe with high-dose chemotherapy followed by a stem cell transplant.
Chemo drugs attack cells that are quickly growing and dividing. The drugs work because cancer cells grow and divide faster than most normal cells. But some normal cells also divide quickly, such as the cells in the bone marrow that make new blood cells, the cells lining the inside of the mouth and stomach, and the hair follicle cells. These dividing cells are the ones most damaged by chemotherapy. This may cause side effects during treatment, such as low blood cell counts, nausea, diarrhea, or hair loss. These short-term side effects usually go away over time after treatment is over.
Late effects, on the other hand, may happen many years later. A child's whole body is growing. This means that many different kinds of healthy, normal cells are dividing faster than they would be in an adult. Some types of chemotherapy can damage these cells and keep them from growing and developing the way they should.
Radiation treatment uses high-energy rays (such as x-rays) to kill cancer cells and shrink tumors. The radiation may come from outside the body (external radiation) or from radioactive materials placed directly into or next to the tumor (internal or implant radiation). Radiation is sometimes used along with other treatments, such as before or after surgery, or along with chemotherapy. In some cases it may be the main treatment.
As with chemotherapy, radiation therapy can affect normal cells as well as cancer cells. A child's risk of late effects from radiation depends on a number of factors, including:
The dose of radiation. Higher doses are often linked to greater risk.
The area of the body being treated. Some organs and parts of the body are more likely to be affected by radiation than others.
The child's age. Younger children's bodies tend to be more sensitive to the effects of radiation.
The child's genetic makeup. Some children may be at greater risk for side effects. For example, the bodies of children with the hereditary form of retinoblastoma (an eye cancer) are more sensitive to the effects of radiation.
Surgery is an important part of treatment for many cancers. As with other types of treatment, the possible long-term effects of surgery depend on a number of different factors.
The type of cancer and where it is in the body help determine the extent of the surgery needed. In some cases, surgery may be fairly minor and may leave nothing more than a scar. In other situations it may need to be more extensive and require removing part or all of an organ, or even a limb. Doctors do their best to limit the effects of surgery by striking a balance between trying to ensure all of the cancer is taken out and removing as little healthy body tissue as possible.
The child's age can also be important. Younger children, whose bodies are still growing quickly, may be more affected by some operations than older children who are already at or near their full body size.
To learn more:
National organizations and Web sites*
American Childhood Cancer Organization (formerly Candlelighters)
Toll-free number: 1-800-366-2223
Web site: www.candlelighters.org
Web site has sections just for children and teens with cancer and their siblings, as well as for adults. Provides information and parent support groups.
Children's Brain Tumor Foundation
Toll-free number: 1-866-228-HOPE (1-866-228-4673)
Web site: www.cbtf.org
Offers a support line, as well as Web-based and printed information for parents and children with cancer.
CureSearch (National Childhood Cancer Foundation and Children's Oncology Group)
Toll-free number: 1-800-458-6223
Web site: www.curesearch.org (look for "after treatment" section)
Can help you find a Children's Oncology Group member institution in your area. Special information for childhood cancer survivors is available from CureSearch at www.survivorshipguidelines.org. Information from some of the world's best pediatric cancer specialists is available on their Web site.
National Cancer Institute
Toll-free number: 1-800-4-CANCER (1-800-422-6237)
Web site: www.cancer.gov (search for "late effects of childhood cancer")
Provides accurate, up-to-date information about cancer to patients and their families, including clinical trials information for patients.
National Dissemination Center for Children with Disabilities
Toll-free number: 1-800-695-0285 (also for TTY)
Web site: www.nichcy.org
Answers questions about disabilities and provides fact sheets about specific disabilities, state resource sheets, parent guides, information about educational rights, and referrals to parent groups. Spanish materials are also available.
National Coalition for Cancer Survivorship
Toll-free number: 1-877-NCCS-YES (1-877-622-7937) to order the Cancer Survival Toolbox® or some publications.
Toll-free number: 1-888-650-9127
Web site: www.canceradvocacy.org
Provides publications on many topics, including employment and health insurance as it relates to cancer. Materials are also offered in Spanish.
Web sites for teens and children
Beyond the Cure (part of the National Children's Cancer Society for teens)
Web site: www.beyondthecure.org
Online support and education for survivors of childhood cancer and their families.
Toll-free number: 1-888-994-4673
Web site: www.fertilehope.org
Provides information on having children in the future to cancer patients whose medical treatments cause the risk of infertility.
Toll-free number: 1-888-793-9355
Web site: www.grouploop.org
An online resource for teens with cancer and their parents – a way to connect with other teens. Group Loop includes online support groups, chat rooms, educational resources, and more.
I'm too young for this
Web site: http://i2y.org
A social networking organization for young adult cancer survivors (ages 15 to 40 years old) and their caregivers that offers support to help improve quality of life for young adults affected by cancer.
Toll-free number: 1-866-444-7427
Web site: www.supersibs.org
Supports, honors, and recognizes brothers and sisters of children diagnosed with cancer so they may face the future with strength, courage, and hope.
Teens Living with Cancer
Web site: www.teenslivingwithcancer.org
An online-only resource dedicated to teens coping with a cancer diagnosis and treatment. Focuses on teen issues and provides resources to support teens, their families, and friends
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