What is neuroblastoma?

Neuroblastoma is a children’s cancer diagnosed in approximately 500 to 1,000 children per year in the USA. Neuroblastoma is a complex tumor of the sympathetic nervous system, a condition that has been known for 35 years. Its frequency is second only to brain tumors and it is seldom seen in children over 14 years old.

The median age for tumor discovery is two years, and it occurs somewhat more in boys than girls. Like most cancers, its cause is unknown. It is extremely difficult to diagnose in small children, and once diagnosed, its progression is often rapid, and very painful. Although neuroblastoma accounts for only 8% of all cancers, it is responsible for over 15% of the deaths.

The disease is diagnosed from stage I (a localized tumor confined to one organ or area of organ) to stage IV (solid tumors that have spread to several organs or parts of the body). Depending on the stage of the disease, treatment may be limited to tumor removal surgery, or may be as extensive as tumor removal surgery combined with chemotherapy, radiation, and bone marrow transplants.

In most cases, children with neuroblastoma are not diagnosed until Stage IV, when, until recently, long-term survival rates stood at a dismal 20% or less. However, encouraging developments in treatment and research are helping children to be diagnosed earlier, and to have increased chances of survival.

Diagnosis of Neuroblastoma

The two most important factors in the prognosis for a child with neuroblastoma are the stage of the disease and the age of the child at the time of diagnosis. For all stages, infants less than one year old have a much better chance for remission and survival than older children. Early diagnosis is one of our best weapons in the war against neuroblastoma.

Often, neuroblastoma is first discovered when parents or a physician feel a mass or tumor somewhere in the child's body. Sometimes the child shows no outward symptoms, and sometimes symptoms resemble those of many more common childhood illnesses, such as bruising, mild flu symptoms, diarrhea, and loss of appetite.

More acute symptoms can include bone pain, hypertension, anemia, skin nodules, a pronounced limp, or a refusal to walk.

Pediatricans can order a simple, non-invasive 24 hour urine test, which is nearly 100% accurate in detecting neuroblastoma cancer. Also, ultrasound, CT scans, and MRI scans can effectively detect neuroblastoma-related tumors.

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How you can help

Everyone has something to offer in the fight for our children. Here are three simple things you can do to help in our battle against neuroblastoma.

1. Write your representatives in congress. Here you’ll find a link to a legislative database, as well as a sample letter you can use to easily write your representative and senators.

2. Make a donation. You can make a general donation to the cause, or a special donation in honor of a person or event.

3. Volunteer. Volunteer your time and skills to our organization to help us be an effective advocate for children with neuroblastoma and their families. For more information about volunteering, contact us.

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