May is Brain Tumor Awareness Month. If you’ve been a long time reader of my blog, and maybe even if this is your first time stopping by PUGTATO, you know I’m passionate about the mission behind oncology.  There is still so much to learn about cancer.  Every cancer is different, and the era of personalized medicine is here.

Brain Tumor Facts:

1. There are over 100 types of brain tumors.
2. In the United States roughly 25,000 people will be diagnosed with a malignant brain tumor in 2016.
3. 16,000 will die.
4. 53,000 people will be diagnosed with a benign brain tumor or central nervous system tumor in 2016.
5. 4,600 brain tumors will be diagnosed in a patient 19 years old or younger.
6. Brain tumors are the leading cause of cancer related death in children under age 14.

There are no early detection or prevention measures for brain tumors.

There are no prevention measures or routine surveillance techniques for a brain tumor, and we really don’t know what causes them. Few therapeutic options exist for treatment. Treatments that are available may leave patients with long term complications that require significant psycho-social and functional support from caregivers and others.

The most common and most aggressive form of brain cancer is Glioblastoma Multiforme (GBM). It is estimated that 12,120 Americans will receive a GBM diagnosis in 2016. Glioblastoma Multiforme has roughly a 4.7% five year survival rate. (This percent varies based on the source, but generally falls at less than 10%)  There is usually no cure for Glioblastoma Multiforme, making GBM one of the most deadly diseases in the United States.

Research is absolutely critical to finding new effective treatments for brain tumors. The National Brain Tumor Society reports that, “despite the devastating prognosis and prevalence of brain tumors, over the last 30 years there have only been four (4) FDA approved drugs and one (1) FDA approved device for the treatment of brain tumors.” Even more staggering, “Between 1998 and 2014, there were 78 investigational brain tumor drugs that entered the clinical trial evaluation process. 75 failed. That is a 25:1 failure ratio in developing new brain tumor treatments over the past two decades.” Making progress in this disease state is tremendously difficult.

Between 1998 and 2014, there were 78 investigational brain tumor drugs that entered the clinical trial evaluation process. 75 failed. That is a 25:1 failure ratio in developing new brain tumor treatments over the past two decades. ~The National Brain Tumor Society

There is an enormous need for more and faster research that translates into longer lives for patients.  Brain tumor research needs more funding so experts like Mark Gilbert, Chief of the Neuro-Oncology Branch at the National Cancer Institute and his incredible team at NCI can create, discover and apply new ways to treat brain tumors that prolong survival.  I had the great opportunity to listen to two talks given by Dr. Gilbert this month.  There were actual moments when my jaw dropped. (I distinctly remember the part of the presentation on IDH-1 mutated GBM and starving brain tumor cells of glucose.  I’ll always be a genetics geek.)  It is impossible to appreciate the magnitude of the work that happens at NCI and other laboratories all over the world.  When you stop and pause for a moment, you realize researchers are creating the future. They are creating something from nothing.  I often wonder how they even think to come up with a place to start?!  It’s mind boggling.  Truly, it is inspiring. Every trial and every result is an idea or concept that did not exist before, and might save someone’s life.

Over the next couple of weeks I’ll be sharing first hand experiences from Brain Tumor Awareness Events. Below are some resources to check out if you are looking for more information about brain tumors. This list is by no means meant to be exhaustive, but can lead you in the right direction to get started learning about brain tumors.  If you like the images in this post, I encourage you to visit Accelerate Brain Cancer Cure (ABC2) on Facebook, where you can download a number of images and “donate” your Facebook cover/profile picture in honor of Brain Tumor Awareness Month.

• The National Brain Tumor Society
• The American Brain Tumor Association
• The Ben and Catherine Ivy Foundation
• ABC2
• National Cancer Institute: What you need to know about Brain Tumors
• Central Brain Tumor Registry of the United States
• The Chris Elliott Fund/End Brain Cancer Initiative 
• Voices Against Brain Cancer
• The Liz Army: A Blog about living with Brain Cancer
• Charlie Blotner’s Blog: A Plated Life
  • Both Liz and Charlie moderate the #BTSM (Brain Tumor Social Media) twitter chat, which is held the first Sunday evening of each month at 9 PM EST. You can follow them on Twitter at @TheLizArmy and @CBlotner_
• For more brain tumor related hashtags to follow on Twitter, check out the Symplur analytics here.
• Check out more brain tumor statistics from SEER (Surveillance, Epidemiology, and End Results Program) here. If you want to learn more about SEER and why its data is important head on over to a previous post.

Is a resource you have used and loved missing from my list?  Please share! I’d love to add it.

Disclaimer: All writing on PUGTATO is my own personal view.  It may not necessarily represent views of my employer, nor should anything I’ve written be considered medical advice.