About My Brain Tumor
Below please find some information about what was found in my head.
In August of 2016, I was brought to the ER by my boss. So embarrassed that I had another anxiety attack, and this time right in front of my manager! Well, as she saw it, it wasn’t anxiety, but something else she may have seen before. The MRI at the ER showed us a very large brain tumor found in the left side of my brain (yes, it looks like the right side in the photo, but that’s how the MRI mirrors what it sees).
Pretty crazy that the tumor, an Oligodendroglioma Who Grade 2, I have is only in nearly 2% of all primary brain tumors. Guess I always like the oddities!
It took a couple of weeks to find and chat with an excellent brain surgeon, Dr. Arnold Etame. He gave me a big, long surgery that August when it was found. My surgeon removed approximately 90% of the tumor. I took quite a few months to heal and feel more normal. In the spring of 2017, I found two more doctors to have oral chemo (temozolomide) treatment along with radiation (zapping, as I call it!). I was scheduled to have six weeks of both, then to move on to further chemo throughout the remainder of the year. However, my blood reacted hugely and became very thin, so only 4 weeks of both were completed. Much of the 10% tumor was then forced to diminish. Follow up MRIs have shown that the remainder of the tumor continues to diminish.
To get you to know the grand scheme of this thing, the following is the general description of the tumor from the US Department of Health and Human Services page: “Oligodendrogliomas are brain tumors arising from oligodendrocytes, a type of cell that makes up the supportive (glial) tissue of the brain. They can be low-grade (grade II) or high-grade (grade III, also called anaplastic). While they can be found anywhere within the cerebral hemisphere, they are most common in the frontal and temporal lobes. They are generally soft, grayish-pink tumors that often contain mineral deposits (calcifications), areas of hemorrhage, and/or cysts. They tend to grow slowly and may be present for many years before they are diagnosed. Common symptoms include seizures, headaches and changes in personality. Other symptoms vary by the size and location of the tumor. The exact cause of oligodendrogliomas is unknown. Some appear to have a chromosome abnormality involving loss of chromosomes 1p and 19q. Treatment generally involves surgical removal of the tumor followed by radiation therapy and/or chemotherapy. Recurrent tumors may need additional surgery, radiation and chemotherapy.”
Want to read more details about my brain tumor? Go read my blog — and just go to posts on the topic HERE.
Post-Surgery Test Findings of the Tumor
For me, here are the important stats that were confirmed through pathology tests. I am sharing for others to compare and contrast if they would like to. (Please note, these are results from testing done on bits of the tumor removed in my operation. These results can and probably will be different for almost everyone with a brain tumor.):
- IDH1 AND IDH2 MUTATIONAL STATUS: POSITIVE FOR IDH1 R132H MUTATION BY MassArray
- ATRX STATUS: RETAINED ATRX EXPRESSION BY IMMUNOHISTOCHEMISTRY (SEE COMMENT)
- 1p/19q STATUS: POSITIVE FOR 1p/19q CODELETION BY FISH
- MGMT PROMOTER METHYLATION STATUS: POSITIVE FOR MGMT PROMOTER METHYLATION
- PTEN/CHROMOSOME 10 STATUS: POSITIVE FOR PTEN/C10 LOSS BY FISH
- EGFR STATUS: NEGATIVE FOR EGFR vIII & NEGATIVE FOR EGFR AMPLIFICATION
- NGS TRUSIGHT HOTSPOT MUTATION ANALYSIS: NEGATIVE FOR ACTIONABLE MUTATIONS
Final Diagnosis: Oligodendroglioma WHO Grade 2.
Comment: Mutant IDH1 combined with ATRX loss is sufficient to place this tumor in the oligodendroglioma category. No mutation was found in the assessed genetic “hotspots”.
Overall, from the site radiopaedia.org: IDH positive + 1p19q codeletion = oligodendroglioma = better prognosis
This photo helps to see exactly how the pathology tests above help a doctor to categorize what type of brain tumor one may have.
Brain Tumor Resources
Here are links to some great information on Oligodendroglioma:
- The National Brain Tumor Society is a great site with all sorts of brain tumor information and supportive things to read. Thier book is a big, overall view of each step one needs to take during this time: Frankly Speaking About Cancer: Brain Tumors. (The information from that helped me a lot!) One of their other efforts is to raise money to support new trials and research.
- The American Brain Tumor Association (ABTA) has a great Oligodendroglioma PDF file to peruse, as well as the page of Oligo info. Overall, their site is a great place to help anyone find information on their tumor, but also shares details on how to get through what you just found.
- A great, easy-to-understand overview at the UK site, The Brain Tumour Charity
- Wikipedia – a scientific point of view
- A site of my brain surgeon, Dr. Arnold Etame, is Brain Health Doctor. Check it out with lots of info!