GREY MATTER LIFE

It’s raining and it’s Monday. I’m moving a little slow and drinking copious amounts of coffee in an attempt to drown out the squeaky wheels in my head. Got to love it when the newly constructed joints in your skull pop around when you’re chewing breakfast. Makes for a very glamorous and irritated domestic goddess! Sort of what TMJ would be like except it’s coming from the side of my head. As the proud owner of a broken head I at least know I’ve got the goods for a freak side-show when I run away with the circus.  

While I’m sure you’d love to hear all about the joys of my Monday crunch head blues, I’m sparing you that adventure and instead taking you on another. I’m taking a baby step upon my little soap box instead.

Drum Roll Please…  

May is National Brain Tumor Awareness Month!

Do you hear the cheers and applause? Yeah, I didn’t either. 

Unless you’re a brain tumor patient, or know one, you probably don’t have a stockpile of information at your fingertips like I do. Why would you? Lucky for you, I like sharing. From my stockpile to yours, you can thank me later. You never know when you’ll need it!

A few years ago, none of this had any significance or relevance in my life. Brain tumors were someone else’s problem and a nightmare from a dream, not real life and not my life. My knowledge was naive and negligible. Boy did I have a swift kick in the ass coming and let me tell you… it still stings.

So here we are, four years after discovering the piece of shit in my head; 21 months post surgery; and a lifetime away from remembering what our life was like before this adventure.  

You probably have no use for this information today or tomorrow; may never know someone affected and may never have a need to add this small assemblage of information into your own stockpile of knowledge and resources. To be honest, I hope you’ll never need any of this. Yet, I ask you to consider the following.

Within this modest stockpile of information lies countless numbers of individuals. Individuals who have lost the battle, those who are currently fighting, those who are celebrating stability and those who are yet to learn they’re on this journey with us. Then there are the physicians, researchers and countless medical professionals who have made it their unrelenting life’s work to make a difference and make an impact.

These are the faces behind the statistics and the information. The faces of those who work to create investigational research, and improved treatment protocols. Faces of those who will and have benefited from that research and those protocols and sadly those who didn’t. Together, all these faces, including mine, hope to inspire you to stand with us as advocates in whatever capacity you are willing to take on.

None of this happens in a vacuum. Recognizing the existing need for increased depth and range of funding is also a part of this. Cultivating an understanding of what funds can, and have accomplished, and will accomplish in the future is critical.  

So welcome to National Brain Tumor Awareness Month and my modest stockpile of info!

Information taken from the North American Brain Tumor Coalition (www.nabraintumor.org) For more links and resources, go to Brain Food. 

Primary Brain Tumors

Primary brain tumors can be benign or malignant; in either case, primary brain tumors begin in the brain and can be life-threatening.

A tumor is classified as benign or malignant based on the behavior and characteristics of its cells. Classification is one major predictor of outcome. A “benign” brain tumor can be life-threatening because of its location or behavior.

Over 44,500 people in the United States and 10,000 people in Canada are diagnosed with a primary tumor in the brain or spine each year. (“brain” as used below includes both brain and spine). (1) Approximately 20,500 Americans are diagnosed with primary malignant brain tumors each year (3.) Another 24,500 Americans will be diagnosed with a primary “benign” brain tumor.

There are more than 126 different types of primary brain tumors, which complicates the development of effective treatments.

In the year 2000, primary brain tumor survivors in the US numbered almost 360,000. Of that group, 267,000 survived a benign tumor. (6)

Metastatic Brain Tumors

Metastatic brain tumors involve cancer that spreads to the brain from another part of the body, and are more common than primary brain tumors. All metastatic tumors are, by definition, malignant.

The incidence of metastatic brain tumors is not fully documented, but it is estimated that at least 140,000 people are diagnosed every year. (2) Metastatic brain tumors occur in roughly 25% of all cancers that metastasize. (2) Approximately 10% to 30% of people with cancer will have brain tumor metastases, particularly those with lung or breast cancer. (2)

Brain Tumors in Children and Young Adults

Brain tumors are the second most common cancer of childhood, and comprise approximately 25% of all pediatric cancers. (7) Over 3,400 children are diagnosed in the U.S. each year; of that, about 2,600 will be under the age of 15. (1) Brain tumors are the leading cause of solid tumor cancer death in children; they are the third leading cause of cancer death in young adults ages 20-39. (7)

The types of brain tumors found in children are different from those in adults. Further complicating treatment is the fact that children’s developing brains are more susceptible to damage from toxic treatments. Although more than 70% of children now survive their tumors, they are often left with long-term side-effects, including:

* Learning problems due to cognitive, neurological, and psychological changes.
* Vision and/or hearing impairments that can contribute to problems in school.
* Increased risk for second cancers due to the late-effects of treatment.

Treatments

1. At present, standard treatments for brain tumors include surgery, radiation therapy, and chemotherapy (seperately or in combination).
2. Only two new treatments for brain tumors have been approved in the past 25 years. (4)
3. Treatment for metastatic tumors can include surgery and/or radiation therapy.
4. Clinical trials determine if promising new approaches to treatment are effective in patients.
5. Enhancing the quality of life of people with brain tumors requires access to quality speciality care, clinical trials, follow-up care, and rehabilitative services.

Mortality Rates

Mortality rates remain unchanged in the last decade. (5) For additional statistics, please refer to the Central Brain Tumor Registry of the United States at http://cbtrus.org/.

The importance of Brain Tumor Research and Data

Improving the outlook for adults and children with brain tumors requires research into their causes and better treatments for brain tumors. As stated before, only two new treatments for brain tumors have been approved in the past 25 years.

Complete and accurate data on all primary brain tumors is needed to provide the foundation for research leading to improved diagnosis, treatment, and investigations of its causes.

References

(1) CBTRUS (2005) Statistical Report: Primary Brain Tumors in the United States, 1998-2002. Published by the Central Brain Tumor Registry of the United States, p. 9

(2) Medline Plus, Medical Encyclopedia: Metastatic brain tumor, Update Date 9/11/06. http://www.nlm.gov/medlineplus/print/ency/article/000769.htm

(3) SEER Cancer Stat Fact Sheets—Cancer of the Brain and Other Nervous System, 2007. http://seer.cancer.gov/statfacts/html/brain_print.html

(4) Nitrosoureas 1970’s, Gliadel Wafer 1996, Temozolamide 1999 & 2005

(5) National Cancer Institute. A Snapshot of Brain and Central Nervous System Cancers. Last updated September 2006. http://planning.cancer.gov/disease/Brain-Snapshot.pdf

(6) CBTRUS (2005) Statistical Report: Primary Brain Tumors in the United States, 1998-2002. Published by the Central Brain Tumor Registry of the United States, p. 10

(7) CA A Cancer Journal for Clinicians, 2007, Cancer Statistics, 2007, Volume 57, Number 1, January/February 2007, p. 59