May 10, 2021 Is National Ependymoma Awareness Day
I’m a bit late getting this Post out. Unfortunately, life gets in the way….
Nevertheless , May 10th is/was National Ependymoma Awareness Day (EAD). In my own words, as a now 7-year ependymoma survivor, today is very special. Admittedly, it’s also not an easy day. Yet, I have never shied away from my disease.
By definition: An Ependymoma is a rare tumor of the brain
or spinal cord. It occurs in both adults and
children. It is a “primary tumor“, which
means that it starts in either the brain or
spine. The brain and spine are part of the
central nervous system (CNS).
Primary brain and spinal cord tumors are
typically grouped by where the cells start. Epenymomas start in the “glial cells”. Thus, they are a type of glioma. See: https://www.cern-foundation.org/uploads/docs/Ependymoma_Guide_2.pdf
I fight, fundraise and advocate for both CERN and the National Brain Tumor Society (NBTS). https://braincancerbabe.com/2021/04/25/helpful-resources-and-information-i-wish-i-had-when-first-diagnosed/
I know that my purpose here on this Earth is to raise awareness and hopefully, inspire those in the battle to keep on, keepin’ on!
The Most Basic Reason Why Today is So Special
Today, we honor everyone who has been affected by this very rare cancer.
That includes patients, caregivers, those we’ve lost but keep close within our hearts, as well as ALL the medical professionals, like the neuro-oncologists, neurosurgeons, pathologists, researchers, etc. who dedicate their careers to an extremely challenging cancer. Of course, today would not be possible without their extraordinary work! Thank you! Thank you!
Also, today would not be possible without the extraordinary work of those at CERN and NBTS. Again, thank you!
ABOUT THE CERN FOUNDATION
The CERN Foundation is a non-profit organization solely dedicated to improving the lives of children and adults worldwide diagnosed with ependymoma.
https://www.cern-foundation.org
All brain tumors and brain cancers are considered rare. Yet, ependymomas are particularly rare.
They’re known mostly as a “pediatric cancer”. However, they do occur in adults.
For example: In April 2014, when I was just 34 I was diagnosed with a primary Grade III brain anaplastic ependymoma. I will admit it took a long time for me to learn how to say it properly. Still to this day, I get tongue-tied trying to say it. 😂
Although the statistics below are just a bit dated, I doubt they’ve changed significantly.
Some Basic Stats on Ependymomas
- Approximately ONLY 1,340 cases are diagnosed per year
- Ependymomas represent about 1.9% (in adults) and 5% (in children) of all CNS tumors.
- treatments have not changed much in decades. It’s first surgery, if possible. Then, depending on the tumor grade, location and how much of the tumor has been removed, radiation therapy is often given.
- The role of chemotherapy has not been established, but researchers are working to find new effective treatments. (HOWEVER SEE BELOW)
- Although they may spread, they typically do not spread beyond the CNS system (ha ha, except for me, of course!)
https://www.cern-foundation.org
So, you can see clearly how insanely rare this cancer is, especially given my circumstances:
- I was diagnosed as an adult
- My tumor recurred initially in less than one year, despite a total resection surgery and 6 weeks of radiation, which I wrote about here: https://braincancerbabe.com/2016/06/09/so-youre-going-to-radiate-my-brain/
- Then, it recurred again, despite another total resection and 5 doses of high-power stereotactic radiation. However, it recurred outside of the CNS system and spread into my parotid gland and multiple lymph nodes (there’s only something like 25-30 reported cases of this occurring)
- And I’m still here, 7 years later 🙂
I AM TRULY AN ENIGMA!
CHEMO/IMMUNOTHERAPY IS NOW BEING UTILIZED MORE WITH THE DEVELOPMENT OF PRECISION MEDICINE & MOLECULAR GENETIC RESEARCH OF TUMOR TISSUE
I KNOW, you may be asking yourself, “What you talkin’ bout, Willis?
What it all boils down to is this: Cancer treatment is moving towards treating the tumor based on genetic, molecular studies of the tumor tissue samples, rather than treating all brain cancer the same way or all breast cancer the same way; i.e. treating the person rather than simply the form of cancer that person has been diagnosed with.
Ex. Researchers are now taking samples of the tumor tissue; looking at the sample under a microscope and studying the sample to see if there are any genetic mutations, which have been found in other cancers. If they see a mutation that has been seen in say breast cancer patients, and there are chemotherapy drugs, which have been successful given that mutation, then researchers can either seek to fund a trial utilizing that chemo for ependymoma patients, or if trials have already been conducted, then the neuro-oncologist can try to prescribe that chemo for their patient
If you’re asking yourself, “How does she know this?” Well, I have become my own quasi-researcher, but beyond that I was prescribed 2 chemotherapy drugs for this exact reason.
Also, I may be participating in a trial due to a genetic mutation found in my tumor samples. Thank you, CERN and the NIH!
WHAT EXACTLY DOES THE CERN FOUNDATION DO?
Established in 2006, the CERN Foundation is now a designated program of the National Brain Tumor Society dedicated to improving the lives of those affected with ependymoma. Today, the CERN Foundation continues to advance ependymoma research by supporting scientific fellowships, clinical trials, sponsoring professional conferences and symposia, and investigating risk factors for the disease. We strive to bring awareness to the rare disease and improve the outcome and care of patients through education, referral support, and supported research efforts. (Emphasis Added)
The CERN Foundation is currently engaged in a range of community outreach programs and support efforts designed to have a positive impact on the lives of children and adults living with ependymoma, as well as their families and caregivers.
https://www.cern-foundation.org/about
PLEASE DONATE TO CERN/NBTS
https://www.cern-foundation.org/get-involved/ependymoma-fund
CONNECT WITH CERN:
The CERN Foundation welcomes questions about ependymoma and we will do our best to answer quickly and honestly.
Please provide us with the information asked below. You can also contact us by e-mail at administrator@cern-foundation.org or by calling us at (844) 237-6674. Our mailing address is PO Box 217, Zionsville, IN 46077
Social Media
Twitter: @CERNfoundation
Facebook: https://www.facebook.com/events/d41d8cd9/ependymoma-awareness-day/272266211024663/
YouTube: https://youtube.com/user/CERNFoundation
CONNECT WITH NBTS:
Website: https://braintumor.org
National Brain Tumor Society | 55 Chapel St., Suite 200, Newton, MA 02458 | 617.924.9997
Social Media
Twitter: @NBTStweets
Facebook: https://www.facebook.com/braintumors/
Instagram: https://instagram.com/natlbraintumorsociety?igshid=wvgl7p0kcdtc Or @nationalbraintumorsociety
As I’ve said all day today, the butterfly is an important symbol for ependymoma patients (and I use “patient” as an all-encompassing term; it includes those in-treatment; those out of treatment; care givers; those we’ve lost but remain with us, watching over us & those who have lost a loved one, etc.).
So, if you see a butterfly today or this week, I believe it’s an ependymoma angel watching over you. If you do see one, I hope you smile and it brings a little bit of joy to your day. 🦋🧠🦋
