After a recent brain scan, it was suspected that I had Leptomeningeal Carcinamatosis, which is cancer of the covering of the brain and spinal cord. The survival statistics for this cancer are beyond grim – four to six weeks without treatment and two to three months with treatment.I’m not ashamed to say that I was shaken to my proverbial bones.
Even though it is somewhat rare – 5-10% of NSCLC (Non-Small Cell Lung Cancer) patients get it eventually, I was hoping like a mad woman that I was in the majority statistic this one time, thinking, “Come on, 90%!” And, happily, after having a spinal tap (it’s not just a movie anymore), I found that the results were negative.
Now that that’s over, my onc thinks that I should try to get into a clinical trial where they’re testing a immunology drug. So this Friday, it is back for another VATS surgery to get the hefty tumor sample required for genetic testing. Being part of a study, means dealing with more statistics.
Lung cancer world is full of statistics and, at stage IV, the statistics are pretty freaking bleak. Here are some of the Lung Cancer/NSCLC stats. I’ve placed an ‘X’ next to those where I fall into the minority and “beat the odds” so to speak, and not always in a good way:1 – In the U.S., 30% of people are diagnosed with some form of cancer. X (I’m also an oddity because I have no family history, never smoked, and had a very healthy lifestyle.)
2 - In the US, lung cancer comprises 14% of cancer diagnoses but a full 27% of cancer deaths. X (There was a point in the diagnosis period when we were hoping for breast cancer. Can you imagine hoping for breast cancer?)3 - NSCLC comprises approximately 84% of all lung cancers.
4 - People diagnosed with stage IV lung cancer have a mean (average) survival rate of 10 months. X (3 years and counting!)5 - Of the people diagnosed with stage IV lung cancer, 54% will have a treatable genetic mutation that responds to oral therapies (although it does not increase survival times). X (I have no known mutation, treatable or otherwise.)
6- Of the people diagnosed with stage IV lung cancer, 60% have a cancer that grows because it has turned off their immune system as it relates to lung cancer. (TBD – I’m hoping to follow the crowd on this one.)7 - Of these 60% who have undergone immunotherapy for the above, 24% have quick, positive, and long-lasting responses (meaning, the immune system starts fighting the cancer and the cancer shrinks). (TBD)
Crossing my fingers for that 24% of that 60%.
Gotta love statistics!