This week, I received results from the glioma-specific blood test I had a couple of weeks ago. I wrote about my experience and my reasons for having the test here.
Before I share my results, I must stress that we don’t yet know what these results mean for my unique situation. The test was not specifically recommended for my particular case, so all we can do is speculate and seek further understanding through additional diagnostic tests and examining blood markers for inflammation and metabolic dysfunction.
I must say, it’s been a fascinating journey in a short space of time. That’s kind of weird in a way. I could literally write a book on this experience, but, to cut a long story short, my test was POSITIVE.
Should I be concerned? What does this mean?…
Put simply, it means that ‘Circulating Glial Cells’ (CGCs) were detected in the samples I provided. This is suggestive of higher risk of detection of glioma and will require follow-up investigations.
I must admit, even though I half-expected this result, it brings up a strange mix of emotions. As per the protocol for a positive result, I'm scheduled for a follow-up with an oncologist later this week. I'll learn more about the implications and potential next steps. It’s likely that I will need to book an MRI to see if there is still ‘no evidence of disease’ on scans. You can never be certain, but I’m fairly confident that will continue to be the case.
It is important at this stage to note that the results of this test don’t necessarily indicate that I am due to have a recurrence any time soon, but may do in future. This is the natural course for a high grade glioma. I have said all along that this disease is incurable and these tumours invariably return in future if you take no action. The plan was always to die with cancer rather than of it.
We must also keep in mind that there is some possibility of a false positive result due to biological variations beyond the performance spectrum of the test.
Personally, I feel the result doesn't really change much, as I realistically suspected I still had cancer. However, I was curious about the test's outcome given my unique circumstances. A negative result would have been incredibly uplifting and comforting, while even a false negative would have been a wonderful placebo.
One thing I would like to share is that I have ambitious aims. My result from this test makes me more determined to try and put extra pressure on these cancer cells, if that is indeed what the test is showing. I have thought long and hard about this scenario over the years and so I can reveal what my plan of action will be once I have all the resources I require. Next week could be very revealing and I look forward to writing about that.
Some general information (adapted from information received in my report)
The test has a sensitivity of >99% as validated on samples from 130 CNS Glioma patients. The test has a specificity of 93.75% as determined by the evaluation of 68 non-malignant Glial or Non-Glial CNS tumors. Circulating Glial Cells (CGCs) were not detectable in asymptomatic individuals (n=1000).
Circulating Glial Cells (CGCs) are defined as cells in the peripheral blood that are GFAP positive and CD45 negative. These CGCs may show positivity for S100/Olig2/Nestin.
This test has been validated for evaluation of risk of detection for certain subtypes of CNS glial malignancies. Rare histopathological subtypes cannot be determined due to lack of antibody specificity.
Results of ICC (antigen expression on CTCs) may vary from that of primary tumour tissue and over time due to tumour heterogeneity and other biological processes. Further, certain conditions such as active inflammatory diseases, medications, exposure to radiation, UV induced sunburn etc. may interfere with accuracy of assay results. Other potential sources of error include, but are not limited to, sample contamination / degradation or pre-analytical deviations.
So what next?
One of the main reasons I had this test was to see if I could stay one step ahead of any potential recurrence of disease. A secondary aim was to contribute to valuable new research designed to improve outcomes. We are entering uncharted territory, which is both thrilling and anxiety inducing in equal measure.
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