One of the most heart wrenching days of my life came after my first surgery when I learned I had a rare disease variant of my cancer. It tanked my survival rate an extra 20%. I felt like someone was yanking my heart through my nostrils. Years later, a subsequent pathology report showed no evidence of the rare disease variant. Poof, I was jacked back up to the normal papillary thyroid cancer statistics – which are damn high. I don’t know what made the variant disappear but I’m extremely grateful.
I love this quote from Rick Gribenas in my book Everything Changes: “Ambiguity is more real than a prescribed prognosis, which is complete crap. If there’s an 80% chance of this, or a 20% chance of that, it’s still a chance. Who knows which percentage I’ll fall into?”
I agree that you have no way of knowing which percentage you’ll fall into, but I still want to know my prognosis. In my mind, not knowing my odds harkens back to the days when doctors refused to tell patients of their prognosis because they didn’t think we could handle the truth. (I’m sure there are still a few docs who think this way.)
I want to prepare myself for the odds, even though I don’t know which side of them I will be on. The danger in this for me is that I’m a hypochondriac freak and if my odds were crummy, it would be hard for those numbers to not rule my life. On the other hand, when I recently learned that my odds of my cancer metastasizing to my lungs, brain, and bones were lower than I expected, it brought me great peace of mind and I was glad to know the numbers.
It irks me when people say “a number is a number” or “I’m not a statistic.” I feel like those phrases trash science and I’m a big fan of science. Statistics represent a lot of information that can help navigate our choices in how we treat our diseases. I think it’s possible to simultaneously look at our health in terms of statistics and live as fully emotional beings.
My prognosis is good so I’m sitting in a pretty cozy space to make these judgment calls about wanting to know my stats. Maybe this whole post would read a lot differently if my numbers sucked.
Do you want to know your survival rates? How do you mentally contain that information?