Rare Tumors Patient & Family Handbook

WHAT NEW METHODS OF TREATMENT ARE AVAILABLE?

These childhood cancers are so rare, with so few children affected, that it is difficult to study them. The Children’s Oncology Group (COG) includes institutions that care for virtually all children with cancer in North America. COG has established a Rare Tumor Committee to focus on these cancers and increase knowledge of the diseases and their treatments. Most of the advances in the treatment of childhood cancer have been made through a process known as clinical trials. In clinical trials, the best known (standard) treatment for a particular cancer is compared with a new (experimental) treatment that is believed to be at least as good as and possibly better than the standard treatment. Participation in clinical trials is voluntary. Because they involve research into new treatment plans, all risks cannot be known ahead of time, and unknown side effects may occur. However, children who participate in clinical trials can be among the first to benefit from new treatment approaches. Before making a decision about your child’s participation in a clinical trial, you should discuss all the risks and benefits with your child’s treatment team. More information about clinical trials is available in the free booklet Taking Part in Cancer Treatment Research Studies from the National Cancer Institute. To obtain the booklet, as well as a great deal of useful information about childhood cancer, call 800.4CANCER (800.422.6237). The booklet can also be downloaded from the Patient Education Publications section of the National Cancer Institute website at www.cancer.gov.

WHAT ARE THE POTENTIAL LATE EFFECTS OF TREATMENT FOR RARE TUMORS?

Like all patients who have been treated with chemotherapy or radiation, survivors of rare tumors may be at risk for developing problems or side effects months or years after treatment. Children who received radiation to the chest area as part of their cancer treatment are at risk for breast and cardiac complications. Other problems may include delayed development of puberty in males, decreased fertility (ability to have children), thyroid or lung problems, increased risk of developing a second primary cancer, delayed growth and development, or bone health issues. To help patients monitor their overall health after treatment is completed, it is important that cancer survivors seek appropriate cancer-related follow-up care. All survivors of childhood cancer should have access to cancer-related (treatment- related) follow-up care, services, and healthcare professionals knowledgeable about late effects of childhood cancer treatment. There are many survivor clinics located at cancer centers throughout the country that offer access to experts who can address a wide range of follow-up concerns. To obtain more information on specific long-term side effects of cancer treatment, go to www.CureSearch.org.

HOW CAN I WORK WITH MY CHILD’S HEALTHCARE TEAM?

Because you know your child better than anyone else, the healthcare team will need your help in managing your child’s disease. It is important to communicate openly. Be sure to question your child’s doctor or nurse whenever there is anything you are unsure about. It helps to write down your questions when you think of them. Here are some examples of questions to ask: What kind of cancer does my child have? Has the cancer spread beyond the primary site?