Brain Tumor Grades and Types

When I was first told that I had a brain tumor, “I was stunned. I was shocked. I wasn’t even sure what a brain tumor was other than bad, very bad.”*

I also had no idea of the different “grades” or “types.”

So when I saw this handy and nicely explanatory web page from the “Accelerate Brain Cancer Cure website- http://abc2.org/guidance/brain-cancer-facts/tumor-grades-and-types - that explained brain tumor “grades” and “types”, I wanted to share it with all of you.

TYPES

There are two types of brain tumors: benign and malignant.  According to the site, “Benign brain tumors do not contain cancer cells.” That’s the good news. The bad news is that “benign” brain tumors can be remarkably harmful and dangerous. For more info on the terrors of “benign” brain tumors please visit the wonderful “It’s Just Benign” website - http://www.itsjustbenign.org/ - which is an incredibly sarcastic/sardonic name for a website.

The ABC² website states that” Malignant brain tumors (also called brain cancer) contain cancer cells.” At all levels that’s bad.

GRADES

Here’s what the site says about brain tumor grades:

“Doctors group brain tumors by grade. The grade of a tumor refers to the way the cells look under a microscope:

• Grade I: The tissue is benign. The cells look nearly like normal brain cells, and they grow slowly.
• Grade II: The tissue is malignant. The cells look less like normal cells than do the cells in a Grade I tumor.
• Grade III: The malignant tissue has cells that look very different from normal cells. The abnormal cells are actively growing (anaplastic).
• Grade IV: The malignant tissue has cells that look most abnormal and tend to grow quickly.”

For more info go to http://abc2.org/guidance/brain-cancer-facts/tumor-grades-and-types

*This is a line from my book – “Chief Complaint, Brain Tumor - about my brain tumor and my journey in trying to recover from it. You can learn more about that here: http://www.chief-complaint.com/

“The Brain Tumor Is Benign, but Threats Remain”

That’s the headline of a New York Times article by Emily Dwass about the misconception that a “benign” means, well, “benign”, as in “not causing death or serious injury” (according to the Merriam Webster online dictionary).

For meningioma brain tumor victims this is, of course, horseshit.

Dwass goes on to put a lie to that myth saying, “In the frightening world of brain a tumor, 'benign' is a good word to hear. But even a nonmalignant tumor can be dangerous — especially if, as in my case, it goes undetected, becoming a stealth invader.”

She goes on to talk about her initial diagnosis, operation and ongoing tumor troubles in her well-written article: http://well.blogs.nytimes.com/2015/04/27/the-brain-tumor-is-benign-but-threats-remain/?_r=0

For meningioma brain tumor sufferers, the insult to significant injury is that when you tell friends, family and business associates that you’re tumor is “benign”, they mistakenly think that you’re going to be all right, just as you were, normal.

One terrific website for victims and caregivers alike is http://www.itsjustbenign.org/ which connects benign brain tumor survivors and caregivers. If you read the survivor stories, you soon find yourselves learning about victims that can no longer work, that have parts of their body that no longer work or the hard work they endure every day just to eat, drink and sleep.

I also recommend that you read Liz Holzemer’s well-written book “Curveball: When Life Throws You a Brain Tumor.” You can read my review here: http://johnstumor.blogspot.com/2012/04/book-review-curveball-when-life-throws.html 

Holzemer also started a terrific nonprofit entitled "Meningioma Mammas" whose mission is to provide support and resources to all those affected by meningioma brain tumors: http://www.meningiomamommas.com/

Unfortunately, I can state with the pain of experience that they are a serious pain-in-the-ass. Actually, that’s not quite correct; they’re more like a pain in the head. I’ve wrote about my own personal brain tumor in “Chief Complaint, Brain Tumor”. http://www.chief-complaint.com/

Experience Project: “Find People who understand you”

Have a brain tumor or know somebody who has a brain tumor? Want to connect them with other brain tumor victims or caregivers? Experience Project is another online forum for sharing brain tumor experiences. Here’s their link: http://www.experienceproject.com/groups/Am-A-Brain-Tumor-Survivor/8106

 

Experience Project describes itself as “…the world's largest living collection of shared experiences and the premier passions-based network, experience project is a comfortable and supportive place for individuals to share and connect with others around the things that matter to them most. With over 24 experience categories, experience project is the definitive online social conversation destination for people to connect with others who really get ‘it’ -and them.”

Are they the world’s largest? Who knows? But their website claims that they have nearly 36 million “Life experiences from people like you.” That seems like a whole lot.

According to the site, “Armen Berjikly, a Stanford graduate, started experience project after first creating a support community for multiple sclerosis patients. How did he start down this path, you ask? Inspired by a friend's diagnosis with the debilitating illness, Armen built a positive community chartered on empowering patients through knowledge. Along the way, the forum portion of the site became the most powerful tool of all. It gave voice to a group of people known to suffer in silence, and the opportunity to be among new friends, those who truly understood each other's challenges.”

If you try it and like it, please let me know. My favorite brain tumor community sites are:

• American Brain Tumor Association site: http://www.abta.org/
• “It’s just benign” website: http://www.itsjustbenign.org/
• The Cancer Survivors Network: http://csn.cancer.org/
• National Brain Tumor Society: http://www.braintumor.org/
• Being Cancer Network: http://www.beingcancer.net/cancer-blogs-lists/brain-cancer/

It’s Just Benign.org, Social Security Disability, Glamour Magazine & Investigation Discovery

Phew! That’s a long headline. But if you missed my previous blog about benign brain tumors and social security disability, here’s a link to a very similar article posted by the wonderful Beth Rosenthal of Itsjustbenign.org – http://www.itsjustbenign.org/page/benign-brain-tumors-and-social-security-disability?xg_ppc=s1

You have to join her website to read the article. A year’s subscription costs a princely $15. A lifetime subscription costs $40.  I’ve subscribed and love the community, the information and the member resources.

I also hope you will join me in nominating her as “An Everyday Hero.” It’s a contest sponsored by Glamour magazine and Investigation Discovery. Here’s the link: http://www.glamour.com/inspired/sponsored/inspire-a-difference I just learned that the contest deadline is September 8^th, so please send something in asap.

Image credit: <a href='http://www.123rf.com/photo_13104688_closeup-of-us-social-security-cards-on-blue.html'>zimmytws / 123RF Stock Photo</a>

 

It’s just Benign: Survivor Spotlight

If you haven’t visited Beth Rosenthal’s www.itsjustbenign.com website lately, you should. Its chock full of information: answers to questions from website members, summer camps for kids and a variety of groups discussing important topics like:

“I can’t drive anymore”

“Cognitive Issues”

“Seizures”

I like it because it’s a focused, well-meaning, helpful community that has all suffered. I’ve recently started reading the “Survivor Spotlight” and find them particularly heartfelt. The current survivor story featuring Paul Gerard emphatically puts a lie to the myth of benign tumors being “benign.” 

Here’s a link: http://www.itsjustbenign.org/page/survivor-spotlight

Full disclosure: IJB membership costs a princely $10/year.