My oncologist seemed surprised by the scan results the first time (or maybe that's just me still obsessively trying to grasp clues out of voice inflection and tone?) but she says the scans always trump tumor markers so we're just keeping on keeping on. But it's strange.
Cancer usually changes all the time. That's why stage iv patients have to keep changing treatments. First something like Faslodex that prevents the cancer from feeding off of estrogen can work well, but over time the cancer evolves so that it does just fine without estrogen or maybe it figures out a different way to get around the Faslodex and still get estrogen, thank you very much. At that point you're done with Faslodex. So maybe you move to a different anti-hormonal that works on estrogen just a bit differently, but if/when that one quits (assuming it ever works in the first place), maybe it's time to go to a chemo like Xeloda. Xeloda tries to sabotage cancer at certain times in the cell growth cycle, but over time the cancer adapts and Xeloda will stop working and it's time to try a different avenue of attack. And so on, and so on.
Different people's cancers give off different amounts of the proteins measured in tumor markers. That's why someone might have a few small spots of cancer and have tumor markers in the 1000's and someone else might have cancer on multiple bones, liver, too, and still have tumor markers in the low 100's (waves and points at self like a crazed game show contestant). It can be a huge source of panic for someone with really high tumor marker numbers to realize how high they are in comparison to other people, but it doesn't necessarily mean they're loaded with cancer. It's an easy rookie mistake, though, because it feels like it just makes sense!
Some people don't really have useful tumor markers at all, and for people who do, they usually do track well against cancer increases and reductions compared to the same person's previous numbers, but, my oncologist tells me, cancer, in addition to changing to work around treatments, can change in other ways and sometimes for some cancers that can mean changing so the same amount of cancer creates more of the proteins that are measured in the blood in tumor markers. She thinks that's probably what we're seeing here.
Are we positive? Well, no real way we can be. But with two stable CT scans, two stable bone scans, and a clean brain MRI (except for the bone mets in my neck and skull bones that showed up, but we already knew about bone mets) there aren't really any places this much extra cancer can hide so it seems likely. And, as long as I'm feeling well and the scans and liver/blood cell numbers aren't showing trouble, she thinks it's unwise to burn through the limited number of treatments available based only on tumor markers not backed by anything else.
So, until that something else happens, I keep looking at things like this:
and keep reminding myself not to panic. Easier said than done, I'll admit, but in the absence of other choices, or at least other smart choices...
And, honesty, although I completely miss having these tumor markers serve as my own personal oracle, ignoring the tumor markers and skipping down my own happy primrose path does seem to get easier with time (primrose path's are quite lovely and a lot more fun than constant fear, after all). At this rate, whenever my scans do get bad again, I'll probably be incredibly shocked even though of course, rationally, I know it's going to happen at some point. Apparently, I just really like pretending I'm unstoppable, I guess.
But, until the scans tell me it's time to worry again, primrose it is! My (real life) garden is planted, I'm doing some alterations to our baby's prom dress and planning the graduation party with my husband (and there were people who told her I probably wouldn't live to see her graduate!), getting ready for a couple of nice trips, and generally going about life.
I've said before how in my opinion the uncertainty is one of the toughest part of this stage iv thing to deal with, but I guess for now a little bit of "ok at this moment" mixed in with a few decent scans and some nice distracting events isn't so bad a way to welcome the summer.