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About Childhood Neuroblastoma Cancer – Detection and Diagnosis

About Childhood Neuroblastoma Cancer – Detection and Diagnosis

About Neuroblastoma

Neuroblastoma CancerNeuroblastoma is a type of childhood cancer that develops in immature nerve cells within the sympathetic nervous system. Part of the autonomic nervous system (which controls bodily functions we do not consciously control, such as breathing and heart rate), the sympathetic nervous system is made up of nerve fibers that run parallel to the spinal cord, ganglia (clusters of nerve cells) found along the nerve fibers, and nerve-like cells located in the adrenal glands. Neuroblastoma begins to grow in the very early forms of nerve cells as they develop in the embryo or fetus.

Neuroblastoma accounts for approximately 6% of all childhood cancers, with about 700 new cases of neuroblastoma diagnosed every year. It is the most common type of cancer in children under one year of age. The average age of diagnosis is between 1 and 2 years of age, while 90% of all cases of neuroblastoma are diagnosed by the age of 5. Neuroblastoma is rarely diagnosed in children over the age of 10.

About 33% of all neuroblastomas begin in the adrenal glands, while about 25% start in the sympathetic nerve ganglia located in or near the abdomen. Most other neuroblastomas begin in sympathetic ganglia located near the spine. The origin site of the neuroblastoma can lead to different types of symptoms; for instance, tumors within the ganglia are often felt as a bump or swelling in the abdomen or spine, while neuroblastoma in the adrenal glands can alter hormonal signals within the nervous system, leading to symptoms in other areas of the body unrelated to the cancer. In about 66% of cases, the neuroblastoma has spread to the lymph nodes and/or the bones at the time of diagnoses.

About Neuroblastoma: Detection and Diagnosis

Neuroblastoma is usually diagnosed after a parent or guardian notices one or more unusual symptoms in their child. The most common symptom of neuroblastoma is an unusual swelling in the abdomen, sometimes accompanied by a lack of appetite. The first step in diagnosis is a routine medical exam by a pediatrician; if neuroblastoma is suspected, your pediatrician will refer you to a pediatric oncologist (a specialist in childhood cancer), who will schedule a series of tests to determine whether your child’s symptoms are indeed caused by neuroblastoma.

The most common diagnostic tools for neuroblastoma include:

  • Lab tests: Samples of your child’s urine and blood will be tested for markers of neuroblastoma. Because neuroblastoma alters the types of hormones the body creates, these hormones can be detected in the urine. A urine test can also help determine kidney function. Blood tests are used to check blood cell counts, kidney and liver function, and the salt balance in the body.
  • Imaging tests: Imaging tests are used to help the oncologist look inside the body to determine if a tumor is present, how far the cancer has spread, and whether treatment has been effective. Imaging tests can include ultrasound, x-ray, CT scan, MRI scan, MIBG scan, and/or a PET scan. Unfortunately, some of these tests require children to stay very still for long periods of time, and/or require staying still in a small, confined space. Because most children with neuroblastoma are so young, these tests can be extremely difficult. Your oncologist may recommend sedation and/or a calming medication to make the tests easier for the child and to ensure more accurate results.
  • Biopsies: Definitive diagnosis of neuroblastoma usually requires a biopsy, which involves removing some of the tumor and examining it under a microscope and/or conducting additional lab testing. Depending on the location of the tumor, the biopsy may be incisional (open) or needle (closed). An incisional biopsy involves removing a piece of the tumor through one or more incisions in the skin. During a needle biopsy, a thin, hollow needle is placed through the skin and into the tumor in order to pull out a sample of the tumor. For young children, biopsies are almost always conducted under general anesthesia.

These diagnostic tools will also be used to stage the neuroblastoma and determine its “risk groupings”. The staging and risk grouping, along with your child’s age and medical history, will help determine the appropriate course of treatment.

About American Childhood Cancer Organization

American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

 

For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at www.acco.org , call 855.858.2226 or visit:

After Treatment – Living as a survivor of Childhood Brain and spinal cord cancer

Treating Brain and Spinal Cord Tumors

The brain and central nervous system control every aspect of our body, from its most basic functions such as breathing to significantly more complex functions such as movement and balance. The brain even controls personality and social interactions. So tumors located in the brain or spinal cord, whether they are benign or malignant, can significant impact how our body functions depending on where they grow and how much damage they inflict on healthy brain tissue. Survivorship issues for children with brain or spinal cord tumors often involves coping with symptoms stemming from the tumor itself, as well as from the treatment required to eliminate the tumor.

When discussing both short- and long-term side effects, it is important to understand the types of treatment options currently used to treat tumors in this very sensitive organ. The goal of any treatment plan is to remove the tumor from the body and if possible to prevent it from recurring, as well as to relieve any symptoms caused by the position and the growth of the tumor. In almost all cases, treatment for brain and spinal cord tumors will involve one or more of the following:

  • Surgery: whenever possible, surgery will be used to remove all or as much of the tumor as possible, while minimizing damage to healthy brain tissue
  • Radiation therapy: radiation may be used after surgery to kill any cancerous cells remaining after surgery, or as the main type of treatment if surgery is not appropriate
  • Chemotherapy: drug-based therapies are generally used to target aggressive, fast-growing tumors, to treat children under the age of 3, or for the treatment of certain cancers that have been proven to respond well to chemotherapy

In most cases, especially involving malignant tumors, treatment will involve some combination of all three. The goal is to develop a treatment plan that is unique to your child and to give them the best chance of long-term survival while minimizing the risk of both short- and long-term side effects.

Living as a Survivor of Childhood Brain or Spinal Cord Cancer: Physical Side Effects

Some side effects may result from the growth of the tumor itself within the brain or spinal cord, while other side effects may stem from inescapable damage to the brain during treatment. A child’s brain is growing and developing much more quickly and actively than an adult’s; on the one hand, this can mean that a child’s brain may be able to compensate for damaged tissue, but on the other hand, a child’s brain is also more sensitive to radiation and other forms of treatment so may be more easily damaged.

Some of the most common physical side effects of a brain tumor include:

  • Problems with physical coordination, muscle strength, and balance
  • Issues with speech and communication
  • Vision and/or hearing concerns
  • General intelligence, memory, and learning skills
  • Delayed growth and/or sexual maturation

Once treatment is complete, your child’s oncology team will work together to assess any possible damage to the brain and/or spinal cord and may recommend specific follow-up treatment(s) to cope with these or other side effects. Coping with physical side effects will often involve a range of different specialists, including physical and occupational therapists, ophthalmologists, audiologists, psychologists, and learning specialists.

A key part of successfully treating both short- and long-term side effects is maintaining excellent records of your child’s cancer treatment. These records will help new doctors, both in childhood and into adulthood, understand the entirety of your child’s medical history and make it easier for them to develop a comprehensive treatment plan for future medical concerns. Key pieces of information to compile include:

  • Pathology reports from all biopsies and surgeries
  • Results of all imaging tests (stored digitally)
  • Operative reports summarizing all surgeries
  • Discharge summaries for all hospital stays
  • A comprehensive list of the final doses of all chemotherapy and other drugs
  • Summaries of the doses and fields of all radiation therapies

About American Childhood Cancer Organization

American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at www.acco.org , call 855.858.2226 or visit: