Montana's Hope

Understanding Neuroblastoma

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

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

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

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

http://www.neuroblastomacancer.org/scripts/content.cgi?template=default&args=main,home

http://http://www.cancerindex.org/ccw/guide2n.htm 

The two most important factors in the prognosis for a child with neuroblastoma are the stage of the disease and the age of the child at the time of diagnosis. For all stages, infants less than one year old have a much better chance for remission and survival than older children. Early diagnosis is one of our best weapons in the war against neuroblastoma.  Often, neuroblastoma is first discovered when parents or a physician feel a mass or tumor somewhere in the child's body. Sometimes the child shows no outward symptoms, and sometimes symptoms resemble those of many more common childhood illnesses, such as bruising, mild flu symptoms, diarrhea, and loss of appetite.

More acute symptoms can include bone pain, hypertension, anemia, skin nodules, a pronounced limp, or a refusal to walk.  Pediatricans can order a simple, non-invasive 24 hour urine test, which is nearly 100% accurate in detecting neuroblastoma cancer. Also, ultrasound, CT scans, and MRI scans can effectively detect neuroblastoma-related tumors.

*Thank you to the NCCS for information. As with any illness please contact your healthcare professional if you have a sick child.

Research on Neuroblastoma is being conducted all over the world.  More advanced medications, treatment, and detection.  If you would like to help in the battle with Neuroblastoma please visit our additional links page.  You can also email us for additional information as well at montanashope@hotmail.com   Please know that we are not physicians we are a family who is fighting back against neuroblastoma, education of neuroblastoma and sharing each and everything that we can to help!  We want to assist as much as possible with this process.  As always thank you for visiting Montana's Hope.  If you have a sick child please seek medical assistance ASAP.  We love hearing from our visitor's so please jump over and sign our guestbook! 

The information listed below has been gathered from various web site's regarding Neuroblastoma!  As always if you have a sick child or believe that your child may be suffering from any type of childhood sickness please seek medical attention from your physician! New changes with treatment are being discovered almost on a daily basis.  We have tried to keep this up to date as much as possible!  If you have additional information that you would like to share with us so that we can add please email us at montanashope@hotmail.com

Treatment

With the sometimes overwhelming amount of information there is on the Internet about various forms of therapy, it can be difficult to determine where to begin your search. Here are some tips that you might find helpful in researching treatment options for your child.

First of all, it would be very beneficial for you to have a good understanding of the type of cancer with which your child has been diagnosed. Knowing your enemy as intimately as possible always provides you with access to more ammunition in the fight. If you are seeking out medical opinions from physicians and researchers that specialize in neuroblastoma, it is a good idea to have a copy of your child's medical reports and any relevant information you might need. Keep a record of details, beginning at diagnosis, and include information such as the following:

• Date of diagnosis and age of your child
• Disease stage
• Location of primary tumour and metastases
• Histology (ask your child's oncologist if you are unsure; can include N-myc amplification, hyperploidy, VMA/HVA ratio, NSE, serum ferritin, lactate, dehydrogenase, GD2, CD44 antigen, TRK-A protooncogene, 1p deletion)
• Treatments used to date
• Description of how your child tolerated therapy
• Any short or long term side effects experienced
• How soon after completion of therapy did relapse occur
• Options presented by your child's oncologist

Once you have gathered together your information, you will be in a much better position to research possible treatment options.

At the clinical trials sites listed above under "Treatment", you will find lists of active clinical trials for neuroblastoma. Clinical trials are available in three phases (see the ped-onc treatment page for a description of clinical trial phases). Keep in mind that your child will have to meet certain criteria to be accepted into these studies. This is done for the protection of your child. Phase III studies show the most promise. However, Phase I and II studies are also worth considering, as they have demonstrated themselves to be potentially beneficial. If your child has recently relapsed, consider enrolling him/her into a Phase III study. If this does not provide a remission or at least stable disease, you may wish to consider a Phase II or Phase I study. The decision, at this point, is largely a personal one. Only you, together with the expert opinion of your child's oncologist, can make that determination.

Another avenue available is to contact an oncologist that specializes in neuroblastoma treatment and research. Again, it would be to your advantage to have as much medical information on your child as possible handy when making contact with one of these physicians. Provide them with a synopsis of your child's medical history, and ask them if they have any current treatments and/or suggestions as to what your next step should be. It might be a good idea to give them contact information for your child's present oncologist. Ask them if they would call your child's doctor to discuss his/her case.

Finally, it would be to your advantage if you are able to connect with other parents fighting the same battle. Experience has shown me that most parents are very knowledgeable about their child's cancer, and are very willing to help others in the same situation. Other parents can prove to be one of your greatest resources.

Below is a list of information regarding side effect's.  Please know that this is gathered information from not only going through the process but also information gathered from website's regarding neuroblastoma side effects.  If you have a child in treatment rely on your parental feelings, if you feel that you need to call a physician please do this ASAP.  You are the parent and know better than anyone if something is wrong!  Thank you for visiting as always.  Feel free to email us any information you would like to share at montanashope@hotmail.com

Immediate Side Effect's