Newly Diagnosed

Newly Diagnosed

With Love to Fellow Brain Tumor Families

Learning that your son or daughter has a brain tumor is one of the most devastating things you will ever hear in your life.  The news knocks the wind out of you. Literally.  Life transitions rapidly from worrying about work, soccer schedules, and what's for supper, to wondering where you go next.  While the steps getting to this final diagnosis were likely painful, it does not compare to the pain of the diagnosis itself.  News of a brain tumor diagnosis is debilitating.  You become focused on savoring every moment with your brain tumor child, while simultaneously trying to spare a few moments for your healthy children.

At this point in life, you are resigned to the fact that whichever medical professionals you were referred to through the natural chain of events, is who your medical team is going to be for fighting this brain tumor.  Your energy to research other options is not there.  You do not have the energy or desire to research what it means for your child to have a brain tumor.  You do not have the energy to find out who is widely considered to be among the best in the area of pediatric brain tumor treatment.  Your energy is at an all-time low for anything, other than hugging and loving your afflicted child. 

The steps that you take after learning that your child has a brain tumor are critical.  You must fight through the debilitation caused by the new diagnosis and educate yourself on what your options are.

The Bare Essentials

The Bare Essentials
The Bare Essentials

The Treatment Process

The Treatment Process
The Treatment Process

Your Child's Brain Tumor Treatment

Your Child's Brain Tumor Treatment
Your Child's Brain Tumor Treatment

If your child has a brain tumor, it is important to assemble a dream team of medical professionals.  Your child deserves this.  Due to pediatric brain tumors being rare, doctors that are at the highest level of treatment generally treat only brain tumors.  While it is important to have experienced doctors, even more important is that your doctors work together as a team.  Good pediatric brain tumor care starts with a team of doctors who work together on your child's case.

Your child's dream team should include the following:

Pediatric Neurologist (preferably Onco-Neurologist)

Pediatric Neurosurgeon (preferably Onco-Neurosurgery)

Pediatric Neuro-Oncologist 

Pediatric Neuro-Pathologist

Pediatric Neuro-Radiologist

Pediatric Neuropsychologist

If necessary:

Pediatric endocrinologist

Pediatric ophthalmologist

A Good Place to Start

A Good Place to Start
A Good Place to Start

There's a good chance that you are currently at a medical facility that does not offer the team of sub-specialists as outlined above.  At a minimum, a good place to start is with the world-renowned Pediatric Brain Tumor Consortium.  This is a professional association of the leading institutions in America in pediatric brain tumor treatment.  It is possible that your hospitalist, general family doctor, or pediatrician hasn't even heard of this association.  However, a second opinion from one of these institutions will put your child in the best position possible to defeat this disease.

Very Important: What You Need to Know

Very Important: What You Need to Know
Very Important: What You Need to Know

Not all NFL quarterbacks are created equally.  Given the choice, would you rather have Tom Brady leading your team, or the guy from the team that finished under .500 last year?  If your child has a brain tumor, you need a good quarterback.  Often times the quarterback of your child's care is the neurosurgeon.  Like NFL quarterbacks, not all neurosurgeons are created equally. Experience and specialization are extremely important considerations.

An experienced neurosurgeon can be the difference between needing a second surgery, or just one.  It can be the difference between continuous seizures, or living seizure free.  And, in some cases, it can be the difference between life or death.  As corroboration, we note with great particularity that expert pediatric neurosurgeons specializing in brain tumor care have even went so far to say that "there is acceptable morbidity" to consider going in a second time. That is, if your child had an unsuccessful surgery the first time, that you should consider having a more experienced neurosurgeon operate a second time--despite the risks associated with that surgery.  It has been statistically proven that such second surgeries performed by industry leaders in pediatric brain tumor removals "achieve a high incidence of GTR (gross total resection) or NTR (near total resection)."  Pediatric neurosurgeons performing at the highest societal level give quite clear advice: "we suggest that referral to a pediatric neurosurgeon experienced in brain tumor surgery should be considered for pediatric patients with residual tumor after initial resection." Pediatr Neurosurg 2001;35:225-229 (Morbidity of Second Look Surgery in Pediatric Central Nervous System Tumors).

To maximize your child's opportunity, and reduce the likelihood of a second surgery, we would recommend that you consult with a highly skilled and experienced pediatric neurosurgeon.  While there are certainly other options available, the Pediatric Brain Tumor Consortium institutions will likely be your best opportunity to find the experience that you can trust with your child's life when it comes to a life threatening brain tumor surgery.  

An experienced neurosurgeon will not only be more comfortable with the deep anatomical parts of your child's brain, but given their experience, they are better at being able to determine normal tissue from abnormal tissue.  When a brain tumor is removed, it is performed under a microscope.  The neurosurgeon looks at the brain tissue under the microscope.  The more brain tumors a neurosurgeon has seen, the easier it is for them to recognize abnormal brain from normal brain.  This experience is not only a matter of life or death, but it can be the difference between getting more tumor out rather than less, or in some cases the difference between leaving important life sustaining tissue behind.

In addition to a good pediatric neurosurgeon, one of the other leaders in your child's care should be a pediatric neuro-oncologist.  A pediatric neuro-oncologist is an oncologist that specializes in child brain cancer.  These professionals are most familiar with existing clinical trials, best practices in terms of chemotherapy treatments, and are often the most knowledgeable in all areas of brain tumor care, including surgery and radiology.  You will likely need to work with a Pediatric Brain Tumor Consortium facility to receive the benefit of a pediatric neuro-oncologist.  According to sources, there are fewer than 40 pediatric neuro-oncologists in the United States--highlighting the extreme rarity of child brain tumors.

Seek Second Opinions

Seek Second Opinions
Seek Second Opinions

Technology Matters

Technology Matters
Technology Matters

Editor’s  Note:  This material is not medical advice.  The information contained herein is not intended to be relied upon as an official advisory opinion of any kind. This information has been provided as supplemental support for a family undergoing a new pediatric brain tumor diagnosis.  If you are a new parent, and would like to visit with other parents that have been impacted by the disease, please do not hesitate to reach out to Team Jack. Please e-mail: andy@TeamJackFoundation.Org.

Medical review: This article is pending peer review by experienced pediatric brain tumor practitioners.