all about my tumor
Some basic information about my brain tumor and a dingdang DIM (did it myself) glossary
I'm going to tell you about my brain tumor - the diagnosis and its characteristics - defining some terms in my own language along the way. Some of this information might apply to your brain tumor, a lot of it might not. Feel free to contribute to my definitions, or send along some definitions of your own.
What is a dingdangbrain?
My brain has been a little dinged up over the past several years (really it’s been practically mauled, but I’m trying to keep things positive).
It is like a car that I am 100% dependent on but can’t trust to start. I have a series of tricks to get the engine to turn over, but occasionally these fail and I’m forced to stay in. When I do get my brain started, it might sputter or moan, seize, or downshift unexpectedly.
There are times when I can coast smoothly for a bit. There are times when I might forget about all my noise and smoke and hiccups (until I ride in someone else’s newer car for a day and marvel at how quiet, easy, and reliable it is).
Dingdang is my gentle curse for my scratch and dent brain, the only one I will ever have.
I have oligodendroglioma
"Oligodendroglioma is a tumor that can occur in the brain or spinal cord. Oligodendroglioma forms from oligodendrocytes — cells in the brain and spinal cord that produce a substance that protects nerve cells." (This definition is from the Mayo Clinic)
Oligodendroglioma is a primary brain tumor.
A primary brain tumor is one that starts in your brain. One of the most fascinating things about brain tumors is that they CAN NOT easily pass out of the blood brain barrier. A brain tumor will most likely never spread to other parts of the body. This means that if you are diagnosed with a primary brain tumor you do not need to worry that it could have spread to your lungs, colon, or breasts.
I find comfort where I can.
Unfortunately, if you have a secondary brain tumor it means that you have another type of cancer that has become very aggressive and has metastasized to your brain.
There are some commonalities (you know, like having cancer in the brain) but perhaps a few differences (I imagine that the primary concern in a secondary tumor scenario is the cancer that caused it).
Oligodendroglioma is, as you have probably discerned, cancerous.
Not all brain tumors are cancerous. In fact, many are benign (but let’s be honest: even "benign" brain tumors can cause serious problems). Our dingdangbrains are very sensitive, and even nonmalignant tumors can grow big or in areas that can cause serious neurological issues. The biggest difference that I can discern is that if a benign tumor is resected (surgically removed) it should not grow back.
Remember how I just said that cancer that starts in the brain doesn’t leave the brain? This is the reason that brain tumors have "grades," not "stages" like most other cancers.
Like staged tumors, graded tumors range from I - IV with IV (four) being the worst
If a lung cancer is categorized as Stage IV, it means it has metastasized to other parts of the body. Because brain tumors don’t really do this, Grade IV means that it is growing very aggressively.
I recently learned how cancers are staged (or graded). Essentially, a person, presumably a trained lab tech, looks in a microscope and counts the number of cells that are in the process of dividing (just like you learned in your ninth grade Biology class).
I am incredibly lucky because my tumor has a genetic mutation - a codeletion of the 1P and 19Q chromosomes. I’m not sure what that means exactly, but I have learned that researchers have seen that tumors with the mutation seem to respond to chemo more than tumors without. Here is a neat little fact sheet.
Two long term studies on low-grade gliomas like mine concluded around the time I was diagnosed.
- RTOG 4902 https://pubmed.ncbi.nlm.nih.gov/23071247/
- EORTC 26951 https://pubmed.ncbi.nlm.nih.gov/23071237/
Tough reads, I know. Here is a decent summation of those studies, as well as evidence of how amazing that codeletion is (and why I am still here, writing, today)
“A risk-adjusted analysis of survival showed that assignment to treatment remained an independent factor, reducing the risk of death by 24% in those treated with PCV plus radiotherapy. A total of 80 patients (25%) had 1p/19q deletions. In these patients with codeletions, progression-free survival increased from 50 months in the radiotherapy-alone arm to 157 months; for patients with the codeletions, median overall survival has not yet been reached in the PCV-containing arm but was 112 months in the radiotherapy arm. There was no significant advantage to adjuvant chemotherapy in non-codeleted patients.”
In other words, I got a good one, the Cadillac of brain tumors. I am plumb grateful that my tumor has this mutation.