Posted 10/26/2016 5:10 PM (GMT 0)
Hilander-
That ledge is a common space for many of us, especially when we carry the burden of an incurable PCa, or the significant chance of advancing into that status. And PSA numbers are the frequent drivers. ADT and chemo can have a huge impact on our perception of disease status as PSA drops dramatically, so we start to feel "maybe I'm a lucky one..." and hope makes us feel better. Any backslide on the PSA challenges those feelings, almost taking hope out of the equation. Just the other night, sitting at the bar in Barrel + Crow in Bethesda, I dialed up my PSA lab from earlier in the day on the NIH patient portal. My stomach dropped when I saw my first uptick since beginning treatment. To put it one way, I had a 20% increase in PSA from 3 weeks ago, 0.05 to 0.06!! I stepped out onto the ledge.
Now I know this is not a rational response for such a small number change, but rational only seems to work when the data are going in the direction I want. Otherwise fear sets in for a while. And so in my fear, I dove into the internet looking for data related to "PSA nadir fluctuation while on ADT for metastatic PCa" (I found a great case study on Prostvac I had never seen before, which slowed my worry a bit, so that was a big plus); I did not sleep great that night; next day as I go through bone scans that include new head angles and isolated images of my arms and visit to the tech by one who looked like a radiologist in the middle of an arm scan, I conjure up a scenario where the radiologist is reviewing scans as they develop and communicating with the tech for additional views because he sees something suspicious, and now I am thinking "oh my, my PSA is low but it started upwards now, and I have developed bone metastasis where there was none, so it must be neuroendocrine/small cell PCa, and I got maybe two years left, and I have not even made a will yet, and there is so much prep I need to accomplish before I leave.....". You may know the drill. And all of this because 0.05 turned into 0.06. Pretty silly, probably inexcusable, but bona fide ledge-sitting for sure.
Of course, 3 hours later, the docs tell me my scan is clear, my nodes are near normal now, NED in viscerals, and they just shake their head and smile when I confess to freaking out a bit about the 20% jump in PSA in only three weeks.
I feel pretty good now.
We laugh or cry, we live or die, by these numbers it seems. I know your worry. It is always OK to find yourself on the ledge, regardless of what put you there, and it is great to post on the forum, accessing the group wisdom that can help a retreat from the ledge.
Be well and be strong in the battle, as you have been.
here's to fightin'
rf