A Lion in the House - Childhood Cancer Frequently Asked Questions
1. How many children in the Austin area are diagnosed with cancer each year?
About 60 children are diagnosed with cancer per year in the Central Texas area (Travis + 45 surrounding counties).
2. How many are now in treatment?
About 120
3. What percentage of children survive cancer today?
About 79% overall. Five-year survival rates vary considerably, depending on the type of cancer the child has. For all sites, the 5-year survival rate is 79%; neuroblastoma (Sympathetic Nervous System Tumors), 66%; brain and other nervous system, 73%; bone and joint, 73%; leukemia, 79%; Wilms tumor (kidney), 92%; and Hodgkin's lymphoma, 96%.
4. How many children in our area have completed treatment?
About 300.
5. Are there clusters of cancer diagnoses among children in our region?
No-None have been identified.
6. What are the types of cancer most prevalent among children?
#1 |
Acute Leukemias |
23% |
#2 |
Brain Tumors |
18% |
#3 |
Lymphomas |
15% |
7. In what ways is childhood cancer different to deal with than adult cancers?
There are several differences:
|
Adults |
Pediatric |
Incidence |
Very common-99% of all cases |
Very rare-1% of all cases |
Sites |
Lungs, breast, colon, skin |
Blood, brain, muscles, bone |
Cause |
Environmental exposures, Life style factors, e.g. smoking |
Not known |
Prevention |
80% preventable |
Minimal |
Early Detection |
Screenings, e.g pap smears |
Minimal |
Prognosis |
Less than 60% survival |
Greater than 75% survival |
8. Are there strategies to help prevent childhood cancer as there are for some adult cancers?
Parents should see that their children have regular medical checkups and should be alert to any unusual signs or symptoms that persist.
9. What are some of the symptoms of childhood cancer?
Cancers in children often are difficult to recognize. Parents should see that their children have regular medical checkups and should be alert to any unusual signs or symptoms that persist. These include an unusual mass or swelling; unexplained paleness and loss of energy; sudden tendency to bruise; a persistent, localized pain or limping; prolonged, unexplained fever or illness; frequent headaches, often with vomiting; sudden eye or vision changes; and excessive, rapid weight loss.
10. What are the most common cancer treatments for children and adolescents?
The types of treatment used most often to treat childhood cancer are surgery, chemotherapy, radiation therapy, immunotherapy, and bone marrow or peripheral blood stem cell transplantation. Doctors use these treatments to destroy cancer cells. Depending on the type of cancer, children may have one kind of treatment or a combination of treatments. Most children receive a combination of treatments, called combination therapy.
11. What are the risks of each treatment?
Treatments for cancer often cause unwanted or unpleasant side effects such as nausea, hair loss, and diarrhea. Side effects occur because cancer treatment used to kill cancer cells can hurt some normal cells, too. When a child begins treatment, the following is helpful to know:
- The kinds of side effects and how bad they will be depend on the kind of drug, the dosage, and the way the child's body reacts.
- The doctor plans treatment so that the child has as few side effects as possible.
- The doctor and treatment team have ways to lessen the child's side effects. Talk with them about things that can be done before, during, and after treatment to make the child comfortable.
- Lowering the treatment dosage slightly to eliminate unpleasant side effects usually will not make the treatment less able to destroy cancer cells or hurt the child's chances of recovery.
- Most side effects go away soon after treatment ends.
12. Are there alternative treatments or supplements in addition to these treatments or in place of these treatments?
Complementary and alternative medicine (CAM) includes a broad range of healing philosophies, approaches, and therapies. A therapy is generally called complementary when it is used in addition to conventional treatments; it is often called alternative when it is used instead of conventional treatment. (Conventional treatments are those that are widely accepted and practiced by the mainstream medical community.)
It is important that the same scientific evaluation used to assess conventional treatments be used to evaluate complementary and alternative therapies. Conventional cancer treatments have generally been studied for safety and effectiveness through clinical trials, which are research studies involving people. Some complementary and alternative therapies have not been studied in clinical trials.
13. What types of specialists care for children and adolescents with cancer?
Children with cancer and their families have special needs that can be best met by children's cancer centers. Treatment of childhood cancer in specialized centers takes advantage of a team of specialists who know the differences between adult and childhood cancers, as well as the unique needs of children with cancers. This team usually includes pediatric oncologists, surgeons, radiation oncologists, pediatric oncology nurses and nurse practitioners.
The treatment of childhood cancer also involves many professionals other than nurses and doctors. Children's cancer centers have psychologists, social workers, child life specialists, nutritionists, rehabilitation and physical therapists, and educators who can support and educate the entire family.
Since the 1960s, most children with cancer have been treated at specialized centers designed for children. Approximately, 94% of children with cancer in the United States are treated at a children's cancer center that is a member of the Children's Oncology Group (COG). All of these centers are associated with a university and most with a children's hospital.
These centers are able to offer children the most up-to-date-treatment through participation in clinical trials, or studies of promising new therapies.
14. What can the average citizen do to help families who are living daily with childhood cancer? Where can a volunteer go to get connected with services that help families?
15. Are there family support groups available?
Yes, Any Baby Can / Candlelighters and Children’s Hospital of Austin offer support groups for parents, patients, siblings and bereaved families. There is also a group called Hungry Bunch for teens through Child Life at Children’s Hospital of Austin.
16. Is counseling available for families dealing with childhood cancer?
- Any Baby Can provides counseling for families participating in the Candlelighters program
- CancerCare, a national organization, offers telephone counseling
1-800-813-HOPE
- Wonders & Worries offers a young adult support group
329-5757
- CanCare provides mentor relationships
324-0233
- Children’s Brain Tumor Foundation offers telephone support
1-866-228-2673
- Some private therapists and counselors in the community also offer grief & loss counseling, adjustment counseling, and counseling for individuals with critical illness.
17. How can programs be found and accessed?
Contact Any Baby Can / Candlelighters, Leukemia & Lymphoma Society, and/or American Cancer Society for additional referrals for counseling and support.
18. Are there camps in Austin for kids with cancer? How can I find out more about them?
19. Are there places in Austin for kids to get wigs if they lose their hair? How can someone who wants to donate human hair for these wigs do so?
20. Are there resources to help children learn to talk about their cancer? Is there help for teachers and students in preparing for a child’s re-entry into school after treatment? Are there books for children that can help build understanding of the cancer experience?
21. What kind of care can a child receive if they don’t have insurance?
- Insurance issues can be very complicated in the childhood cancer world. For advocacy and information, contact a Children’s Hospital of Austin Social Worker or Candlelighters Social Worker to discuss options. You might also contact the Patient Assistance Program or CARDON at Children’s Hospital of Austin for more information.
- To see if you qualify for health insurance in Texas, you can call Insure-A-Kid at 324-CHIP or call Texas Department of Insurance at 1-800-252-3439.
- For advocacy and insurance issues, contact Patient Advocate Foundation at 1-800-532-5274. A caseworker will be able to discuss your specific issues directly.
22. How open should I be about my child’s prognosis? Should I show total honesty or “sugarcoat” some of the diagnosis?
Your first question may be, "Should I tell my child about the cancer?" You may want to protect your child, but children usually know when something is wrong. Your child may not be feeling well, may be seeing the doctor often, and may have already had some tests. Your child may notice that you are afraid. No matter how hard you try to keep information about the illness and treatment from your child, others - such as family, friends, and clinic or hospital staff - may inadvertently say things that let your child know about the cancer. In addition, it will upset your child to find out that you were not telling the truth; your child depends on you for honest answers.
Telling your child about his or her cancer is a personal matter, and family, cultural, or religious beliefs will come into play. It is important to be open and honest with your child because children who are not told about their illness often imagine things that are not true. For example, a child may think he or she has cancer as punishment for doing something wrong. Health professionals generally agree that telling children the truth about their illness leads to less stress and guilt. Children who know the truth are also more likely to cooperate with treatment. Finally, talking about cancer often helps to bring the family closer together and makes dealing with the cancer a little easier for everyone.
23. If survival is not an option, how do we talk about death in a way that is comforting and not frightening?
This can be a difficult and uncomfortable topic for parents. See earlier advice from question number 22 in order to think about age appropriate information to share with a child.
Seek professional support if you are not sure how to address death. Contacting a Social Worker at Hospice Austin, Any Baby Can / Candlelighters or Children’s Hospital of Austin might be helpful. Contact Candlelighters for a list of books to assist in talking about death.
If religion and/or spirituality is important to a family or child, seek advice/support from a religious/spiritual advisor to aid in a discussion about death.
The Dougy Center and the Children’s Grief Education Association are excellent resources for family members experiencing loss.
| Local Hotlines |
| First Call for Help – United Way |
211 |
| MHMR Crisis Calls |
472-4357 |
| Psychiatric Emergency Services |
454-3521 |
| Suicide Hotline |
1-800-SUICIDE
1-800-784-2433 |
This document was created by the caring professionals of The Children’s Hospital of Austin and Any Baby Can/Candlelighters with additional content from the National Cancer Institute and American Cancer Society.
