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Childhood Neuroblastoma Cancer: Causes, Risk Factors, and Prevention

Author Archives: American Childhood Cancer Organization

Childhood Neuroblastoma Cancer: Causes, Risk Factors, and Prevention

Posted on May 10, 2018 by American Childhood Cancer Organization

What Causes Neuroblastoma?

neuroblastoma-stage-1Neuroblastoma is caused by the abnormal development of immature nerve cells known as neuroblasts. As a fetus develops, most neuroblasts grow and eventually become mature nerve cells either before birth or in the first few months after birth. However, in some cases, neuroblasts do not develop correctly. Instead of becoming mature nerve cells, they continue to grow and divide. In some cases, these abnormal neuroblasts simply die off; however, in some rare cases, they develop into tumors or neuroblastoma.

Because neuroblastoma begins with the abnormal development of fetal neuroblasts, it is the most common type of childhood cancer in children under the age of one. As children grow out of infancy, these abnormal neuroblasts become less likely to either develop correctly or die off and more likely to turn into neuroblastoma. The average age of diagnosis for neuroblastoma 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 found in children over the age of 10.

Unfortunately, scientists do not know why some neuroblasts develop and mature normally and others do not. Research is beginning to show a link between the development of neuroblastoma and abnormal changes to the DNA in the neuroblasts. These DNA mutations cause neuroblastoma cells to have an abnormal chromosomal structure (either too many or too few chromosomes). The abnormal chromosomal structure may cause the neuroblasts to develop into neuroblastoma; it may also impact how quickly the neuroblastoma grows and develops. In rare cases, this abnormal DNA is inherited from a parent. However, in most cases, it is the result of random gene changes that occurred at some point in the child’s development.

Can Neuroblastoma Be Prevented?

Random DNA mutations during fetal development, like the ones that scientists believe may be linked to the development of neuroblastoma, are random events that, in most cases, do not have a specific cause or trigger. Scientists do not believe that these specific DNA mutations are caused by lifestyle or environmental factors (as is the case with some types of adult cancers). Therefore, there is no way to prevent these DNA changes or the development of neuroblastoma. In fact, at this time, there are no known ways to prevent most forms of childhood cancer.

What are the Risk Factors for Neuroblastoma?

A “risk factor” is something that may impact your child’s chances of developing cancer. For example, some types of adult cancers may be linked to lifestyle choices, such as smoking, or environmental factors. However, there are no known risk factors linked to lifestyle or environment for most forms of childhood cancer, including neuroblastoma.

The two biggest risk factors for neuroblastoma are age and heredity.

  • Age: Most cases of neuroblastoma are diagnosed in children between the ages of one and two, and 90% are diagnosed before the age of 5.
  • Heredity: 1% to 2% of neuroblastoma cases seem to be the result of a gene inherited from a parent. Children with familial neuroblastoma usually have one or more family members who also had neuroblastoma as infants.

However, it is important to remember that neuroblastoma is an extremely rare disease, with only about 700 cases diagnosed each year.

Scientists also believe that having birth defects, or congenital anomalies, may also be a risk factor for neuroblastoma. Although the link is not yet clearly understood, scientists believe that genetic mutations in the DNA that cause birth defects may also increase the likelihood of abnormal cell development leading to the development of childhood cancer. Again, however, it is important to note that neuroblastoma is extremely rare and most children with a congenital abnormality will not develop neuroblastoma.

More about Childhood Neuroblastoma Cancers:

Learn More About the Different Types of Childhood Cancers:

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:

Steps to finding the right cancer clinical trial for your child

Posted on May 2, 2018 by American Childhood Cancer Organization

What is a Clinical Trial?

Clinical TrialClinical trials are a part of long-term research studies designed to develop and test potential new treatment options for cancer and other illnesses. When a team of physicians and/or scientists believes they have developed a potentially effective new treatment, they will first study the treatment in the lab, and then potentially test it on animals. If the new treatment shows promise, it may be tested in people through a multi-phase clinical trial. This is an important step in determining whether a new treatment gets government approval and can be incorporated into existing treatment protocols. Clinical trials are a critical part of the on-going fight to develop new and better treatment options for cancers, especially childhood cancers.

Is a Clinical Trial Appropriate for My Child?

More so than adult cancers, every type of childhood cancer is considered a rare disease requiring an extremely specialized treatment approach unique to that particular type of childhood cancer. Volunteering your child for participation in a clinical trial may have important benefits for both your child and for the future of childhood cancer treatment more broadly. Your child may receive the benefit of new, more effective, and less toxic medications, while researchers have the opportunity to see how effective their new treatment is.

While some clinical trials for childhood cancer may be funded by private organizations and pharmaceutical companies, most are sponsored by the federal government through the Children’s Oncology Group. The trials are performed by specialists in pediatric oncology at major treatment centers around the United States (and globally), including for example St. Jude’s Research Hospital, Dana Farber Cancer Center, Duke Comprehensive Cancer Center, MD Anderson, and others. The Pediatric Brain Tumor Consortium also sponsors clinical trials specifically for childhood brain tumors.

How Do I Find a Clinical Trial?

If you believe your child may benefit from participating in a clinical trial, the first step is to discuss the possibility with your child’s oncology team. He or she may know of a clinical trial that would be appropriate, but if not, he or she can help guide your search, including providing information, answering your questions, and suggesting avenues of research. Do not be shy about or afraid of discussing this openly with your child’s oncology team! These specialists understand the importance of clinical trials generally, and the potential benefit for your child more specifically.

The process of identifying an appropriate clinical trial can feel like a daunting process. However, staying organized and focused while walking through a few clearly-outlined steps, while discussing these options with your child’s oncology team, can make the process more approachable:

  1. Have all relevant details about your child’s cancer readily available. These details will help you winnow out clinical trials that are not relevant and will help guide your conversations with trial coordinators. Work with your child’s oncology team to complete the National Cancer Institute’s Cancer Details Checklist, then keep this Checklist handy throughout each step of your search.
  1. Research appropriate clinical trials. Unfortunately, because clinical trials are sponsored by a wide variety of different types of organizations, there isn’t a “master database” with every single ongoing trial. However, most clinical trials for childhood cancer are sponsored by the Children’s Oncology Group, so the two best places to start your search are:

Other search options include contacting one or more of the 69 NCI-Designated Cancer Centers across the Unites States; these organizations maintain lists of the clinical trials they are conducting and may be able to help you determine which ones, if any, may be appropriate for your child. Childhood cancer advocacy groups may also be able to provide helpful information as well.

  1. Gather information on specific clinical trials relevant for your child. Look at the protocol summary for each clinical trial you believe may be relevant, and compare it to your child’s Checklist. The following questions may be helpful in determining whether to pursue one or more specific trials:
    • What is the main objective of the clinical trial?
    • Does your child fit the eligibility requirements?
    • Where is the trial being conducted?
    • How long will the clinical trial run?
  1. Contact the Trial Coordinator. Once you have found a clinical trial that may be appropriate for your child, you must contact the “trial coordinator”. Usually this point of contact is included in the protocol summary. The trial coordinator will decide whether the clinical trial is appropriate for your child, and if so, help arrange a meeting with a physician who is part of the trial team. Your child’s oncology team may also be able to help with this initial contact.

Participating in a clinical trial will directly impact your child’s health and cancer treatment plan. Therefore, it is absolutely critical that you move forward ONLY with the knowledge and approval of your child’s oncology team. Ask your child’s doctor about the potential risks and benefits of participating in the trial, especially as compared to the risks and benefits of traditional treatment. Your child’s team can help you decide if moving forward with a clinical trial is in the best interest of your child’s short- and long-term health.

  1. Make an Appointment. Once you and your child’s doctor have decided to move forward with participation in a clinical trial, it is time to make an appointment with the trial team. The trial team will make a final determination about eligibility, help you understand all the potential risks, and define the next steps in your child’s 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:

About Childhood Neuroblastoma Cancer – Detection and Diagnosis

Posted on April 10, 2018 by American Childhood Cancer Organization

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.

More about Childhood Neuroblastoma Cancers:

Learn More About the Different Types of Childhood Cancers:

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:

What is the expected life span of Childhood Brain and spinal cord cancer tumors

Posted on March 25, 2018 by American Childhood Cancer Organization

Brain and Spinal Cord Tumors in Children: Some Introductory Basics

i-2j4LjZrOn average in the United States each year, there are more than 4,000 new diagnoses of childhood brain and spinal cord tumors, making this the second most common type of childhood cancer after leukemia. And on average, the five-year survival rate (meaning the number of children who survive more than five years after the end of treatment) across all types of brain and spinal cord tumors (including both malignant and benign) is very good: 3 out of 4 children diagnosed with a brain tumor will survive longer than five years.

In reality, however, discussing “brain and spinal cord tumors” in a general sense is very nearly impossible. There are a wide variety of different types of brain and spinal cord tumors, each of which is very rare, requires a unique treatment approach, and has its own set of key statistics based on a fairly limited set of data (due to the rarity of each type of tumor). Therefore, while understanding the basics of brain and spinal cord tumors is important, your child’s oncology team will be able to discuss your child’s specific diagnosis, treatment approach, and long-term prognosis based on the details of his or her unique case.

Some of the most common types of brain and spinal cord tumors in children include:

  • Gliomas: About 50% of all brain and spinal cord tumors in children fall into this broad category, which covers any tumor that begins in the glial cells. The most common gliomas include glioblastoma and other types of astrocytomas, brain stem gliomas (10-20% of all brain tumors) including diffuse intrinsic pontine gliomas (DIPGs), ependymomas (about 5% of all brain and spinal cord tumors in children), and oligodendrocytes (about 1% of all brain and spinal cord tumors).
  • Medulloblastomas: Medulloblastoma is the most common and most easily treated tumor within a broad classification known as primitive neuroectodermal tumors (PNETs). PNETs develop from immature neuroectodermal cells in the central nervous system and account for about 20% of all brain and spinal cord tumors in children. Other types of tumors within this classification include pineoblastomas, medulloepitheliomas, ependymoblastomas, and neuroblastomas that develop in the brain or spinal column.

Other, rarer forms of brain and spinal cord tumors in children include:

  • Choroid plexus tumors
  • Craniopharyngiomas
  • Mixed glial and neuronal tumors
  • Germ cell tumors
  • Spinal cord tumors

About Brain and Spinal Cord Tumors: Key Prognosis Statistics

Due to the rarity with which each specific type of brain or spinal cord tumor is diagnosed, we simply do not have enough information to compile accurate statistics on five-year survival rates for every single type of brain or spinal cord tumor. Moreover, thanks to the speed at which medical science is advancing, treatment options for many different types of brain and spinal cord tumors have improved dramatically over the past few decades, making older statistics no longer relevant. So while we can provide general information on the most common types of brain tumors, based on information from the Central Brain Tumor Registry of the United States (covering children treated between 1995 and 2010), it is important to note that these statistics are general and can vary widely. Therefore, these statistics do not accurately represent the chances of long-term survival for any one specific child.

The percentages listed below refer to the 5-Year Survival Rate (the percentage of children who survive five years or more after treatment):

  • Philocytic astrocytoma: 95%
  • Oligodendroglioma: 90% – 95%
  • Fibrillary (diffuse) astrocytoma: 80% – 85%
  • Ependymoma (including anaplastic ependymoma: 75%
  • PNETs (including medullablastoma and pineoblastoma): 60% – 65%
  • Anaplastic astrocytoma: 30%
  • Glioblastoma: 20%

More about Childhood Brain Tumor Cancers:

More about Childhood Spinal Cord Tumor Cancers:

Learn More About the Different Types of Childhood Cancers:

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 ACCO, or to order resources for you or your child, please visit our website at www.acco.org.

 

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

Posted on March 23, 2018 by American Childhood Cancer Organization

Treating Brain and Spinal Cord Tumors

life after brain cancerThe 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

More about Childhood Brain Tumor Cancers:

More about Childhood Spinal Cord Tumor Cancers:

Learn More About the Different Types of Childhood Cancers:

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:

Action Days 2018

Posted on March 8, 2018 by American Childhood Cancer Organization

2017_0502St.Baldrick___sFoundation_0315WASHINGTON, D.C. – APRIL 23rd – 24th, 2018

CLICK HERE or the button below to REGISTER:

REGISTER TODAY»

You’re invited to join the American Childhood Cancer Organization and the Alliance for Childhood Cancer for the 7th Annual Childhood Cancer Action Days. This two-day event in Washington brings our community together to advocate for important childhood cancer issues currently before Congress.

Your Voice Matters:
A strong showing of advocates at Action Days 2018 is more crucial than ever. We will be at a critical point in the legislative process on several key issues for children with cancer. Sharing your story in Washington this spring will ensure the voice of children with cancer is heard loud and clear!

Details:

  • Monday, April 23rd: Issues and Advocacy Training at the Washington Marriott at Metro Center Hotel (775 12th St NW, Washington, DC 20005)
  • Tuesday, April 24th: Kick-off breakfast and pre-scheduled meetings with Members of Congress and their staff on Capitol Hill
  • Registration is now open! A registration fee of $50 per family will help cover expenses, including breakfast and lunch on training day for all attendees. A limited number of scholarships will be available (see registration page). Transportation to/from Childhood Cancer Action Days is the responsibility of those attending.

Hotel Reservations:
The Alliance has a room block ($209/night) at the Washington Marriott at Metro Center Hotel for the nights of Sunday, April 22, Monday, April 23rd and Tuesday, April 24th. You may make reservations by calling 1-800-393-2510 and mentioning “Childhood Cancer Action Days”; or by using the online booking link. We recommend you reserve your room early as the room block may reach capacity!

RESERVATIONS MUST BE MADE BY MARCH 23RD – CLICK HERE

Questions? Please contact alliance@asco.org.

About the Alliance for Childhood Cancer:
Founded in 2001, the Alliance for Childhood Cancer is a forum of over thirty national patient advocacy groups, and medical and scientific organizations. These organizations meet regularly in Washington, DC to share ideas and concerns and work collaboratively to advance policies leading to improved research, public education, and diagnosis, treatment, supportive care and survivorship for children and adolescents with cancer. Read More…

On behalf of the American Childhood Cancer Organization and the Alliance for Childhood Cancer, we look forward to seeing you in Washington, DC in April.

International Childhood Cancer Day 2018

Posted on February 15, 2018 by American Childhood Cancer Organization

Advancing Cures, Transforming Care, Instilling Hope

Hope Hands ICCD 2018_ FB Image LR copyFOR IMMEDIATE RELEASE – February 15, 2018 – Beltsville, MD – (ICCD) is celebrated around the world each year on February 15th. Originally commemorated in 2002, ICCD is day founded by Childhood Cancer International (CCI), a global network of 188-member organizations in 96 countries. Childhood Cancer International, along with the American Childhood Cancer Organization (ACCO), is committed to working collaboratively towards advancing cures, transforming care, and instilling hope for all children and adolescents diagnosed with cancer in the world, wherever they may live.

Sadly, childhood cancer continues to be the leading cause of non-communicable related death in children throughout the world. Globally, more than 300,000 children are diagnosed with cancer each year, including nearly 16,000 in the United States. Approximately 80 percent of our world’s children with cancer live in low-middle-income countries (LMICs) where more than 80 percent of these children die of their disease. In developed countries like the United States, Canada, the United Kingdom, Japan and others, more than 80 percent of children survive cancer with hope to live productive and meaningful lives.

The global coalition believes all children deserve hope for a cure – no matter where they live – not more excuses. We can no longer sweep this issue “under the rug.” Children are the future of our country and our world. Their vitality is the heartbeat of the world, a shared passion that can unite us because our future as a global community depends on it. Ruth Hoffman, CEO of ACCO as well as President of CCI says, “ACCO is so proud to provide the U.S. based voice in advocating for all children, no matter where they live.”

In the United States events will be taking place across the country commemorating the day, including an event in Kentucky in which Governor Matt Bevin will be speaking at a rally celebrating first time state level funding for childhood cancer research. Specially designed t-shirts including over 7,000 names of children diagnosed with cancer have also been sold across the country in their honor and memory.

The American Childhood Cancer Organization was founded in Washington, D.C. in 1970 by parents of children and adolescents diagnosed with cancer and is dedicated to shaping policy, supporting research, raising awareness, and providing educational resources and innovative programs to children with cancer, survivors, and their families. For more information please visit acco.org.

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Causes, Risk Factors, and Prevention of Childhood Brain and Spinal Cord Tumors

Posted on February 10, 2018 by American Childhood Cancer Organization

What causes brain and spinal cord tumors in children?

06172016 (3)Generally speaking, “cancer” is a broad name for a condition in which cells in a particular part of the body begin to malfunction. They begin to grow, divide, and replicate more quickly than normal cells, and/or they do not die as normal when they are worn out or damaged. When these abnormal, or “cancerous”, cells originate in the brain or the spinal cord, they usually form a clump or a mass known as a tumor. As the cancerous cells continue to replicate, the tumor grows until it begins to cause damage to the brain and/or the spinal cord.

Scientists are still trying to learn exactly why some cells grow, function, and die normally, while others grow abnormally and develop into a brain or spinal cord tumor. Brain and spinal cord tumors are most likely caused by mutations (random changes) in the DNA within each cell (our DNA provides instructions governing the function of each cell in our body, and ultimately how our body looks and functions as a whole). Specifically, scientists believe that mutations to two specific types of genes may be the ultimate cause of brain and spinal cord tumors in children: oncogenes control when cells grow and divide and tumor suppressor genes slow down cell division and instruct cells to die at the proper time. Whether inherited from parents or spontaneous and random, mutations to these particular genes may cause cells to malfunction and ultimately become cancerous.

Ultimately, however, scientists do not know why these mutations occur, especially in children. While lifestyle choices such as smoking can cause genetic mutations (and thus cancer) in adults, there are no known lifestyle risks associated with childhood brain and spinal cord tumors in children. Unfortunately, the genetic mutations at the root of the tumor growth are simply random changes that cannot be predicted or prevented.

Are there risk factors for brain and spinal cord tumors in children?

A “risk factor” is anything that increases an individual’s chances of developing a disease like a brain or spinal cord tumor. As noted above, most cases of brain and spinal cord tumors in children appear to be caused by random genetic mutations without a known cause. There are very few known risk factors associated with this type of childhood cancer. The only two well-established risk factors are radiation exposure and certain rare inherited genetic conditions.

  • Radiation exposure: exposure to large amounts of radiation is known to cause some types of cancer, including brain and spinal cord tumors in children. Now that this danger is known, the medical community takes active steps to avoid exposing the brain and central nervous system of children to radiation unless absolutely necessary. In some cases, radiation may be required as part of treatment for another type of cancer; in these cases, the benefits of treating one type of cancer must be weighed against the potential risk of developing a brain or spinal cord tumor in the future.
  • Inherited genetic conditions: in less than 5% of cases of childhood brain and spinal cord tumors, children have an inherited genetic condition that may increase their risk of developing a tumor. These genetic syndromes themselves are exceedingly rare, and may include:
  • Neurofibromatosis type 1 (von Recklinghausen disease)
  • Neurofibromatosis type 2
  • Tuberous sclerosis
  • Von Hippel-Lindau disease
  • Li-Fraumeni syndrome
  • Gorlin syndrome (basal cell nevus syndrome)
  • Turcot syndrome
  • Cowden syndrome
  • Hereditary retinoblastoma
  • Rubinstein-Taybi syndrome

Can the development of brain and spinal cord tumors in children be prevented?

Can the development of brain and/or spinal cord tumors in children be prevented? This is a question many parents will ask themselves upon receiving the terrible diagnosis that their child has a brain or spinal cord tumor. The answer is always “no”. There is no known way to prevent or protect against brain or spinal cord tumors, and absolutely nothing that parents or guardians could have done to prevent this disease.

More about Childhood Brain Tumor Cancers:

Learn More About the Different Types of Childhood Cancers:

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 ACCO, or to order resources for you or your child, please visit our website at www.acco.org.

 

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:

Childhood Brain and Spinal Cord Cancer Tumors – Detection and Diagnosis

Posted on February 5, 2018 by American Childhood Cancer Organization

Childhood Brain and Spinal Cord Tumors: A Brief Introduction

child Brain TumorsWhen grouped together in a single classification, cancers in the brain and spinal cord are the second most common form of cancer in children after childhood leukemia, with more than 4,000 new diagnoses every year. However, it is important to recognize that this is a very broad classification: in fact, there are many different types of brain and spinal cord cancers, each of which can cause different symptoms and each of which may require a unique treatment approach. It is also important to note at the outset of any discussion about cancers of the brain and spinal cord that, unlike in other areas of the body, oncologists do not differentiate between benign (non-cancerous) and malignant (cancerous) tumors in the central nervous system. Both types of tumors can be life-threatening if not treated. For this reason, oncologists usually refer to “brain tumors” instead of “brain cancers”.

Childhood Brain and Spinal Cord Tumors: Detection Through Common Signs and Symptoms

As with all childhood cancers, there is no “early detection” screening process for tumors of the central nervous system. Diagnosis usually comes after parents begin to observe unusual medical symptoms. Most symptoms of brain and spinal cord tumors are caused by the tumor raising the pressure inside the brain (known as intracranial pressure). The increase in intracranial pressure can lead to symptoms such as:

  • Headaches
  • Nausea and vomiting
  • Crossed eyes and/or blurred vision
  • Balance problems
  • Behavioral changes
  • Seizures
  • Drowsiness, potentially leading to coma

Of course, most of these symptoms are extremely common and are only rarely caused by a tumor. However, if symptoms continue over time or worsen, or in the case of seizures begin very suddenly, your pediatrician may recommend testing to properly diagnose the cause of the medical issue as quickly as possible.

Because the central nervous system controls the function of the entire body, the location of the tumor within the brain or spinal column may cause different types of symptoms:

  • Tumors in the cerebrum (large, outer part of the brain) can cause symptoms relating to the specific function controlled by the area of the cerebrum affected by the growth of the tumor, such as:
    • Tumors in the area of the cerebrum responsible for movement can lead to weakness or numbness in a specific part of the body, usually only on one side
    • Tumors in the area of the cerebrum responsible for language can cause speech or comprehension problems
    • Tumors at the front of the cerebrum can lead to issues with thinking, personality, and language skills
    • Tumors at the back of the cerebrum or near cranial nerves can cause issues with vision
  • Tumors in the cerebellum can cause symptoms relating to walking or other normal body functions
  • Tumors in the basal ganglia can cause unusual or abnormal body positions or movements
  • Tumors in cranial nerves (not those in the cerebrum) may cause loss of hearing, balance issues, weakness of facial muscles, or potentially trouble with swallowing
  • Tumors in the spinal cord may cause numbness, weakness, lack of coordination, and even bladder and/or bowel concerns

Childhood Brain and Spinal Cord Tumors: Diagnosis

In most cases, the first step in diagnosing a brain or spinal column is an imaging test, most likely an MRI (magnetic resonance imaging). An MRI is able to create detailed images of the brain using a combination of radio waves and strong magnets; moreover, it does not involve the use of radiation, which can be extremely damaging to the brain tissue of young children. While not painful or physically invasive, an MRI can be a difficult test for some children. It can take a long time and often requires the patient to stay still in a confining tube for an extended period. Some children may require sedation or medication to help them relax in order to make this test less stressful.

Should the MRI or other imaging scan reveal a tumor, the next step is, when possible, to conduct a biopsy, in which some or all of the tumorous tissue is removed from the body and examined under a microscope. A biopsy may be done simultaneously with surgery to remove the entire tumor, or it may be done as a stand-alone procedure in order to determine next steps in treatment. In some cases, usually due to the location of the tumor in a sensitive or dangerous area of the brain or spinal cord, a physical biopsy may not be possible and diagnosis must be made on the basis of imaging alone.

Specific types of biopsies include:

  • Stereotactic needle biopsy: Guided by MRI or CT scans, the surgeon drills a very small hole into the skull precisely over the location of the tumor. A very small, hollow needle then withdraws a small part of the tumor. This approach is usually used to biopsy tumors in areas where surgery may be difficult or dangerous, but a sample of tissue is still required for precise diagnosis.
  • Craniotomy: If the surgical team believes that they can safely remove all or most of the tumor, a biopsy will be performed as the tumor is removed. Small samples of the tumor are examined immediately during the surgery to determine whether further surgery is required.
  • Lumbar puncture (spinal tap): This test is used to determine whether there are cancerous cells in the cerebrospinal fluid, or the fluid that surrounds the brain and spinal cord. The test involves removing some of the fluid through a small needle inserted between the bones of the spine.
  • Bone marrow aspiration and biopsy: This test may need to be done if it is believed the tumor has spread beyond the nervous system. During the aspiration, a small amount of liquid bone marrow is removed from a large bone, usually the hip bone, using a small, hollow needle. A biopsy involves removing a small piece of bone along with some of the marrow.

More about Childhood Brain Tumor Cancers:

More about Childhood Spinal Cord Tumor Cancers:

Learn More About the Different Types of Childhood Cancers:

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:

Treatment for Childhood Leukemia

Posted on December 20, 2017 by American Childhood Cancer Organization

What is the Treatment for Childhood Leukemia?

The majority of children diagnosed with childhood leukemia will be treated with chemotherapy. Chemotherapy (often simply called “chemo” for short) involves targeting cancerous cells with specific drugs. The specific type of drugs, their dosages, and the duration of the treatment will be unique to each patient, depending on the type and classification of leukemia, the cancer’s classification of risk, and the specific needs of each child. Surgery and radiation are not commonly utilized in the treatment of childhood leukemia, although they may be required to address specific health issues in certain cases. Because chemotherapy can have significant short- and long-term health effects on childhood leukemia survivors, researchers are continuing to investigate new and less toxic treatments such as immunotherapy and targeted chemotherapy; however, these treatments are still in the research phase.

Because AML and ALL are the two most common types of childhood leukemia, this discussion will focus specifically on their treatment.

Chemotherapy for ALL

pediatric ChemotherapyTreatment for children with Acute lymphocytic leukemia (ALL) usually involves smaller dosages of chemotherapy but spread over a period of two-to-three years (boys often receive treatment for longer than girls, due to a higher risk of recurrence). For most children with ALL, chemotherapy will involve three distinct phases:

  • Induction: The goal of induction is to kill 99% of existing cancer cells and achieve “remission”, in which no cancer cells are found in the bone marrow and blood counts return to normal (this is not, however, the same as a “cure”). Induction usually lasts about one month and is extremely intense, requiring prolonged hospital stays and frequent visits to the doctor. Induction almost always includes intrathecal chemotherapy, in which the chemotherapy is targeted at the cerebrospinal fluid to kill any cancer cells that may have spread to the brain and/or spinal column.
  • Consolidation (intensification): This phase usually lasts for 1-2 months and is designed to reduce the number of cancer cells remaining in the body, as well as fight the potential for drug resistance among those cancer cells. This phase is also highly intense (often more so than induction).
  • Maintenance: About 95% of children with ALL will achieve remission after induction and consolidation. For these children, an additional 2 years of so-called maintenance chemotherapy will help prevent the disease from recurring. Maintenance is much less intensive, and usually involves the administration of chemotherapy for brief periods every 4-8 weeks. The early part of maintenance may involve 1-2 months of intensified treatments called re-induction or delayed intensification.

Chemotherapy for AML

Chemotherapy for AML is more intensive, involving higher dosages of treatment drugs but over a shorter duration. Chemotherapy for AML includes an induction phase and a consolidation (intensification) phase, but usually lacks a maintenance phase.

  • Induction: Induction for AML usually involves the administration of drugs for several days in a row, with treatments scheduled every 10-14 days. Less time between treatments is generally more effective but can lead to more severe side effects. Each treatment plan will depend on the child’s unique disease progression and their reaction to the chemotherapy. Treatment will continue until the bone marrow is clear of leukemia cells, usually after 2-3 treatment cycles. As with ALL, treatment usually involves intrathecal chemotherapy as well.
  • Consolidation (intensification): Between 85-90% of children with AML will achieve remission after the induction phase. Consolidation usually involves several more months of intensive chemotherapy, as well as intrathecal chemotherapy. In some cases, a stem cell transplant from a sibling may be appropriate as well, especially for children with high risk AML.

Although the duration of treatment is shorter for AML, it requires extensive supportive care and attention to ancillary issues such as nutrition, medication, and blood transfusions to cope with the more severe side effects, including (but not limited to) damage to the bone marrow responsible for creating new blood cells.

More about Childhood Leukemia Cancers:

Learn More About the Different Types of Childhood Cancers:

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: