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What is the expected life span of Childhood Neuroblastoma Cancer

What is the expected life span of Childhood Neuroblastoma Cancer

 

Statistics on Five-Year Survival Rates for Children with Neuroblastoma

IMG_2275Any discussion of prognosis or outlook is usually based on five-year survival rates, or the percentage of children with a specific type of cancer who live at least five years after their initial diagnosis. These numbers are based on studies performed at least five years ago, and so may not reflect improvement in treatment options for some types of cancers. Moreover, these numbers are merely averages and do not indicate the outlook or prognosis for your specific child. Your child’s oncologist will be able to give you a better understanding of your child’s unique case based on his or her type of cancer, age, general health, and response to treatment.

Staging and Prognosis Factors for Neuroblastoma

Five-year survival rates for neuroblastoma are based on a complex system that involves a detailed understanding of the stage of the disease at diagnosis and a series of “prognosis factors”. Currently, statistics on survival rates for neuroblastoma are maintained by the Children’s Oncology Group (COG), which classifies all cases of neuroblastoma into three risk groups: low risk, intermediate risk, and high risk. These risk grouping are based the disease’s stage and prognosis factors.

Staging: There are two different methodologies to determine the stage of disease, or how far the disease has spread beyond the site of the original tumor:

  • INRGSS: International Neuroblastoma Risk Group Staging System utilizes the results of imaging tests such CT, MRI, or MIBG scans and can be determined before treatment has begun.
  • INSS: International Neuroblastoma Staging System assesses staging after surgery to remove the tumor is performed.

Prognosis factors: these are certain markers that can indicate whether a specific neuroblastoma may respond better or worse to treatment, and can impact a child’s long-term outlook. Specific prognosis factors used to help assign risk for neuroblastoma are:

  • Age: children under 12-18 months tend to have a better long-term outlook than older children
  • Tumor histology: when examined under a microscope, tumors that contain more normal-looking cells tend to have a better prognosis (favorable histology v. unfavorable histology)
  • DNA ploidy: in young children, neuroblastoma cells that contain the same amount of DNA as normal cells (a DNA index of 1, or diploid) seem to respond less favorably to treatment than those that have an increased amount of DNA (a DNA index greater than 1, or hyperdiploid).
  • MYCN gene amplifications: neuroblastomas with too many copies of the MYCN oncogene (a gene that helps regulate cell growth and division) seem to grow more quickly and respond less well to treatment.
  • Chromosome changes: scientists are just now beginning to understand how the presence or lack thereof of certain chromosomes with the DNA structure of the cells can impact the prognosis for neuroblastoma.
  • Neurotrophin (nerve growth factor) receptors: Neurotrophin is a chemical that helps nerve cells mature. Neuroblastomas that have more neurotrophin receptors, especially those receptors called TrkA, are associated with a better long-term outlook.

Five-Year Survival Rates by Risk Group (COG Risk Groupings)

Low Risk: Children whose neuroblastoma is considered “low risk” have a five-year survival rate that is higher than 95%. The low risk group incorporates children who fall into the following categories:

  • All Stage 1 diagnoses
  • Stage 2A or 2B and under 1 year of age
  • Stage 2A or 2B, older than 1 year of age, with 0 extra copies of the MYCN gene
  • Stage 2A or 2B, older than 1 year of age, with extra copies of the MYCN gene and a favorable histology
  • Stage 4S with favorable histology, hyperdiploid, and no extra copies of the MYCN gene

Intermediate Risk: Children whose neuroblastoma is considered “intermediate risk” have a five-year survival rate of 90-95%. The intermediate risk group incorporates children who fall into the following categories:

  • Stage 3, under 1 year of age, no extra copies of the MYCN gene
  • Stage 3, greater than 1 year of age, no extra copies of the MYCN gene and a favorable histology
  • Stage 4, under 1 year of age, no extra copies of the MYCN gene
  • Stage 4S, no extra copies of the MYCN gene and has normal DNA ploidy and/or has an unfavorable histology

High Risk: Children whose neuroblastoma is high risk have a five-year survival rate of 40-50%.

  • Stage 2A or 2B, over 1 year old, with extra copies of the MYCN gene and an unfavorable histology
  • Stage 3, under a year old, with extra copies of the MYCN gene
  • Stage 3, over a year old, with extra copies of the MYCN gene
  • Stage 3 and over 18 months old, with an unfavorable histology
  • Stage 4 with extra copies of the MYCN gene
  • Stage 4 and over 18 months old
  • Stage 4, between 12 and 18 months old, with extra copies of the MYCN gene, unfavorable histology, and/or a DNA index of 1
  • Stage 4S with extra copies of the MYCN gene

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:

The Childhood Cancer STAR Act Has Been Signed!

BREAKING NEWS!
THE CHILDHOOD CANCER STAR ACT HAS BEEN SIGNED!

Yesterday, June 5th 2018, as a result of your action and the collaboration of many childhood cancer advocates across the country, the Childhood Cancer STAR (Survivorship, Treatment, Access and Research) Act became law. The President signed the bill at 5:15 PM EST this Tuesday!
Thank you for taking action to transform childhood cancer into a national child health priority. Please like and share the great news of this historical day in the fight against childhood cancer!

WE STILL NEED YOUR HELP!

TAKE ACTION

WHAT’S NEXT?

The ACCO (American Childhood Cancer Organization), with our partners at the Alliance for Childhood Cancer and all of you in the childhood cancer community, have collaborated and worked diligently for nearly three years to see this law finally passed!

 

It’s not over though! We need to continue to ask our legislators to fund the STAR Act for each of the next five years! We will continue to need your support by sharing, taking action through our advocacy platform and by reaching out to your representatives to make this a reality!

 

How to Help:

  1. Click this link to Take Action and Thank your Members of Congress – CLICK HERE
  2. Tweet your members of Congress by finding their Twitter Handle and thanking them – CLICK HERE
  3. As a member of the ACCO, share your voice! Comment or share on our Facebook Page – CLICK HERE
  4. Donate to the ACCO to help us advocate for families and children facing a diagnosis of childhood cancer today – DONATE
  5. Visit Our “Advocacy” Section on Our Website for More Information – CLICK HERE

 

CONTACT ME PERSONALLY:

We are grateful for YOU choosing to be a part of our American Childhood Cancer Organization community of supporters. We appreciate you taking time to be a voice for children with cancer…because kids can’t fight cancer alone!

 

Jamie Ennis Bloyd, MPA
Director of Government Affairs and External Relations

 

P.S.  Please reach out to me personally anytime at jbloyd@acco.org to be more involved with our advocacy efforts! Be sure to follow us on social media for updates at www.facebook.com/ americanchildhoodcancer or on Twitter @accorg.

Federal

The American Childhood Cancer Organization is a key leader in providing a voice within the halls of Congress for children and families affected by a childhood cancer diagnosis. We believe the urgent cries of children with cancer have been silenced by hospital walls for too long. Each child is special and should be valued, not treated as a faceless statistic. We believe personal stories matter – when shared with elected officials they are our most powerful weapon in the fight against childhood cancer. With the recent implementation of a new grassroots advocacy software system called Voter Voice, we’ve made it easier and faster than ever for our advocates to take action to contact elected officials at the state and federal level from home, or even the hospital. 

In the past year, ACCO gave children battling cancer as well as childhood cancer survivors a voice as a multitude of health insurance policies were debated that directly jeopardized their lives. Our advocacy emphasized the importance of maintaining the requirement for any proposal to cover essential health benefits while prohibiting annual or lifetime caps on coverage. We also spoke out against allowing states flexibility to limit or even exclude coverage for children with cancer because of pre-existing conditions. Additionally, we stood up for the one-third of all children diagnosed with cancer who depend on Medicaid to provide life-saving treatments by opposing drastic cuts in funding. 

In the past year we’ve also empowered advocates to be a part of the passing the RACE for Children Act – a revolutionary piece of drug development policy that will promote access to the latest cancer drugs being developed for adults that have a common molecular pathway in pediatric cancer types. This will help ensure children have access to new cancer treatments too. Currently stakeholders are participating in public meetings to determine the list of molecular targets to be included by the Federal Drug Administration as a result of the Race for Children Act. 

We are very excited that on June 5, 2018 – after three years and thousands of you took action – the Childhood Cancer STAR (Survivorship, Treatment, Access, Research) Act was signed into law! The most comprehensive childhood cancer legislation ever to be considered by Congress, this bill will increase overall pediatric cancer research funding at the National Institute for Health as well as expand research about the complicated issues of long-term survivorship; improve data collection for better outcomes utilizing shared information; and ensure childhood cancer has improved representation on the National Cancer Advisory Board.

Now the STAR Act needs to be fully funded each year for the next five years. Visit our Take Action center to stay up to date on our progress and take further action to keep the STAR Act moving.

Finally, we are proud to serve as a key member of the Alliance for Childhood Cancer, a collaboration of over 30 national advocacy groups uniting together towards one key purpose, ending the devastation of childhood cancer. As part of the Alliance, ACCO serves as a part of the Policy Workgroup to guide overall decision-making for legislation, policy, and initiatives the collective organizations will support. In addition to legislation, as a part of this collaborative the ACCO joins other members in advocating for increased funding for childhood cancer research in the National Institute of Health and the National Cancer Institute.

 

 

Neuroblastoma Childhood Cancer: Signs and Symptoms

Neuroblastoma

Neuroblastoma is the most common form of cancer in children under the age of one, and accounts for about 6% of all types of childhood cancers. It develops in neuroblasts, or immature nerve cells, that should eventually mature into nerve cells. In most cases, neuroblastoma is detected after a parent or guardian notices unusual symptoms, which often relate to the origin site of the neuroblastoma. About 33% of neuroblastomas begin in the nerve clusters near the adrenal glands. About 25% start in the sympathetic ganglia (a type of nerve cell cluster) in or near the abdomen. About 42% of neuroblastomas begin in sympathetic ganglia near the spine. However, in a majority of cases (about 66%), the cancerous cells have spread to the lymph nodes and/or bones at the time of diagnosis.

Common Symptoms of Neuroblastoma

Because neuroblastoma occurs most frequently in newborns and very young children, a neuroblastoma diagnosis is usually made after a parent, guardian, or caretaker notices one or more unusual symptoms and takes the child to a pediatrician. The most common symptoms of neuroblastoma include:

  • Enlarged belly
  • Swelling in the legs or in the face, neck, and/or upper chest
  • Lump or swelling in the abdomen or neck, usually without pain
  • Bluish lumps or bumps in the skin
  • Weight loss
  • Not eating or complaining about feeling full
  • Issues with urinating or bowel movements
  • Issues breathing or swallowing
  • Bone pain
  • Drooping eyelid and small-looking pupil in one eye
  • Bulging eyes and/or bruising around the eyes
  • Issues with being unable to feel or move parts of the body

neuroblastoma symptomsIn many cases, symptoms of neuroblastoma are caused by a tumor, or mass of cancerous cells, that becomes visible through the skin or begins to press on other organs of the body. The location of the primary tumor will impact the specific symptoms the child is experiencing. For instance:

  • Tumor in the abdomen or pelvis: If the tumor is located in the abdomen or pelvis, a loved one may notice a large lump or swelling in that area. Usually the swelling is not painful. However, it can cause the child to eat less; he or she may complain of feeling full or experience belly discomfort. These symptoms can, over time, lead to weight loss. If the tumor begins to press against blood or lymph vessels, it can lead to swelling in the legs and, for boys, the scrotum. It can also impact the bladder or intestines, causing issues with urination or bowel movements.
  • Tumors in the chest or neck: Tumors located in the neck may look or feel like a hard, painless lump. When located in the chest, the tumor may begin to press on the superior vena cava, a large vein through which blood exits the head and neck. This pressure may lead to swelling in the face and upper body, sometimes accompanied by a bluish-red skin color. It may lead to headaches, dizziness, or even a change in consciousness. If the tumor begins to press on the throat or windpipe, it can cause coughing or trouble swallowing or even breathing. A tumor that presses on specific nerves in the neck or chest will lead to symptoms in the areas that nerve controls, such as the eyes or the limbs.

Symptoms caused by neuroblastoma that has spread

In about two-third of all neuroblastoma cases, the neuroblastoma has spread beyond its point of origin into other areas of the body, usually the lymph nodes and/or the bones. As the cancer spreads, it begins to cause symptoms in other ways. For instance, if it has spread to the lymph nodes, the cancerous cells may cause the lymph nodes to swell. While in the vast majority of cases, swollen lymph nodes are caused by a common infection, they should be checked by a physician.

Neuroblastoma can also spread to the bones, which can be extremely painful. It may cause the child to complain of bone pain (if old enough to talk), or cause the child to limp or refuse to walk. If it spreads to the bones in the spinal cord, it can lead to weakness, numbness, or even paralysis in the arms and/or legs. If it spreads to the bones around the eyes, it can lead to bruising or bulging eyes. If it spreads to the bones of the skull, it can cause bumps under the scalp.

One particular type of neuroblastoma, found only in the first few months of life, is known as Stage 4S neuroblastoma because the tumor has spread to the liver, the skin, and/or the bone marrow. This leads to very specific symptoms such as blue or purple bumps on the skin, an enlarged liver felt as a mass on the right side of the abdomen, and difficulty breathing if the tumor has grown large enough to press on the lungs. However, despite the fact that it is widespread, Stage 4S neuroblastoma is very treatable, and sometimes even shrinks or disappears on its own.

Paraneoplastic Syndromes

Paraneoplastic syndromes are problems stemming from hormones released by the neuroblastoma. These unusual hormones can impact the normal functioning of nearby tissues or organs, even if the tumor itself has not spread into those areas. This can lead to a range of additional symptoms, including:

  • Fever
  • High blood pressure (irritability)
  • Rapid heartbeat
  • Constant watery diarrhea
  • Reddening or flushing of the skin
  • Sweating

And most unusually, neuroblastoma can cause a set of symptoms called opsoclonus-myoclonus-ataxia syndrome or “dancing eyes, dancing feet.” A child with this syndrome will have irregular and rapid eye movements and twitch-like muscle spasms, and will lack coordination when standing or walking. Although researchers do not understand why, neuroblastomas in children who exhibit these unusual symptoms seem to be less life-threatening that other forms of neuroblastoma.

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:

Gold Ribbon Hero Katrina Bugge

Katrina’s journey:
Katrina was diagnosed with Stage 5 Wilm’s Tumor on November 24, 2002 at the age of 4. We will never forget that date, where we were, what we did, and what brought us to the Minneapolis Children’s hospital.
Katrina’s little sister, Mariah, was 8 months old when we brought Mariah to a Pediatric Urologist for reoccurring UTI infections. During Mariah’s visit the doctor asked many questions about our family medical history. We shared with the doctor that Katrina had had 1 kidney infection in April, was currently doing the potty dance and on occasion would have an accident. Towards the end of the appointment the doctor decided to do an ultrasound on Mariah’s kidneys. He thought that it would be a good idea for us to have an ultrasound done on Katrina’s kidney too as 1 kidney infection can cause damage. We told him that Katrina was in the waiting room with her grandma. He checked his schedule and said that he had time for both girls. I went to the waiting room to get Katrina. Mariah’s kidneys looked perfect. The ultrasound tech told us that she could not see Katrina’s kidneys very well so we needed to check in at the hospital where the more advanced ultrasound machines are. After that ultrasound, we heard the words no parent wants to hear, your daughter has cancer. Katrina was immediately admitted to the hospital. The following days were a blur.

Katrina underwent 27 weeks of chemotherapy, 3 surgeries and radiation. She handled the treatments well until the last couple of weeks. Her weight become dangerously low so they gave her medication to increase her appetite. Wow, did she eat. She was back to her average weight within 2 weeks. The last 4 chemo treatments were very hard on Katrina’s body. She began to lose muscle tone on her left side. Her eye lid was droopy, she didn’t have much strength in her arms and legs and she got “club foot”. The doctors decided not to administer the last round of chemo. Her surgery went as expected. Following the surgery was radiation. Then we heard the words, “Katrina is in remission”.
Our doctor told us that Mariah saved her sisters life. They will always share a special bond!

Why Katrina is a Gold Ribbon Hero:
She was the strongest and bravest little girl we knew. Many times, Katrina would comfort us when she saw tears in our eyes. She would say, “Mommy and daddy I am going to be okay. The bug in my tummy is going to be gone soon.” Even on the toughest days, her smile would brighten the entire room.
As parents, it was so hard to understand why our daughter had cancer. Why did God choose Katrina? For many years we asked ourselves why was my daughter diagnosed with cancer, we are now able to answer that question with confidence. She was diagnosed with cancer to be the role model of hope for the children and families faced with cancer.

Today Katrina is a 15-year childhood cancer survivor. Katrina never let cancer define her; however, it is a very important part of her life. Every day she sees the scar on her stomach and is reminded of how fortunate she is to enjoy the new adventure each day brings.

Two years ago, Katrina created a personal platform, “Inspire a Golden Journey”, to inspire hope in children and families faced with childhood cancer. Katrina would like the children to realize that even though they may have little control of their disease, they cannot let it define them, and for them to create their own personal golden journey just as she has.

This year Katrina goal was to give back to the community that supported her during her journey with cancer. Katrina raised over $8,000 for the Infusion Center to purchase new chemotherapy chairs. The new chairs will replace the chairs that she sat in when she received chemotherapy. The chairs have heated seats to help control their body temperature, back massage to help relax back muscles, full back recline for patients to sleep if fatigued, trays for food or personal devices along with other features. Her other accomplishments include Painting the Community Gold for Childhood Cancer Awareness month, spoke at a National Lions Convention about her personal experience with pediatric cancer and made 50 activity kits for children in the hospital undergoing chemotherapy.

Katrina is making a difference of the lives of those faced with cancer. This is why we feel Katrina is a Gold Ribbon Hero.

Date of Diagnosis:
11/24/2002

Status:
Survivor

Cancer Type:
Kidney Cancer Stage IV

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Gold Ribbon Hero: Regan Schott

Regan’s journey:

Regan was diagnosed at 7 months old with stage 4 MRT… she fought hard without any complaining or fussing for 6 months before being given the terminal diagnosis. She was always a ball of energy and smiles. If you didn’t know she had cancer you’d never have been able to tell from her actions. She always had bright eyes for the doctors and nurses while making them laugh. She was strong all the way until the last days and even at the end she managed to find a way to smile. She will always be my hero and my personal angel.

Why Regan is a Gold Ribbon Hero:
She’s a gold ribbon hero because she didn’t once complain about treatment, or being stuck in hospitals. She always went with the flow and seemed to make the best out of all of her situations. While her journey was short, it was hard and she took it like a champ. Even proving doctors wrong on a few occasions and always giving the nurses a reason to smile.

Nominee’s Fundraising Page:
https://www.youcaring.com/darylschottandfamily-790434

Other social media pages:
www.reganstrong.blogspot.com

Date of Diagnosis:
04/01/2017

Status:
In Memory

Cancer Type:
Malignant Rhabdoid Tumor (MRT) Stage IV

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Childhood Neuroblastoma Cancer: Causes, Risk Factors, and Prevention

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 causes 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.

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

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

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: