It’s the nature of cancer and its treatment that there are often incredibly difficult decisions to make on very little information with no real idea of the eventual outcome.
Once conventional treatments for cancer (or any other life-threatening illness) fail, you enter a realm with no landmarks, full of apparently identical paths, and you must choose one. Or else refuse to choose any, and so wait for death to catch up. Because past chemotherapy and radiation, there are experimental studies, alternative remedies, and so on. One of them might be the path to long life and health, but there’s nothing to distinguish it from all the others. And it’s entirely possible that none of the paths lead anywhere but a quick death, some more painful than others. And there’s still nothing to distinguish one from another.
So many paths, all looking exactly alike. Choose one.
We’re facing a particularly difficult decision soon. Rebecca qualified for a Phase I clinical study of a novel treatment. It isn’t chemotherapy, but a whole different class of drug. To quote (with a minor edit) the Sloan-Kettering Cancer Center:
Many cancer cells have a protein called p53 that does not work properly. This protein normally puts the [brakes] on rampant cell growth, and when it does not function well, cells can continue to grow uncontrollably (as cancer cells do). The p28 drug is designed to find and kill cancer cells with dysfunctional p53.
The major advantage is that p28 isn’t anything like chemotherapy; thus, it doesn’t have the toxic side effects of chemotherapy drugs, though apparently some patients do get nauseous from the infusions. It’s basically a genetic therapy, in the sense that the treatment is designed to address a particular genetic situation. It doesn’t interfere with other systems, like the immune system or bone marrow. Not so far as anyone knows, anyway. It’s always possible the study could show otherwise.
We’re in this study because the genetic analysis of her tumor last fall indicated a “p53 deletion”. Thus, drugs meant to address p53-related problems are a first choice. In theory, p28 could completely halt the growth of her tumors.
In theory. In practice, miracle drugs are never totally miraculous — every type of cancer is its own distinct thing, and every patient responds differently. The upshot is that there’s no way to know if her tumors are being affected by the p28 drug without doing an MRI. The doctors leading the study arm in Pittsburgh want to do an early MRI, six weeks into the study instead of 12, to see what’s going on.
If we do the MRI and the tumor is essentially unchanged from the start of the study, then it means the drug is working. In that case, we continue the treatments while we try to figure out ways to cause the tumors to shrink, either through careful surgery or other experimental treatments. Kat’s been researching options along those lines, since she’s the one with three advanced-practice medical degrees and a Doctorate of Nursing.
At the other end of the spectrum, if we do the MRI and it shows the tumor is growing just as fast as before, meaning the p28 isn’t working at all, we would withdraw from the study, because the time we spend going there and back for treatment is wasted time.
But if we do the MRI and it shows too much continued growth, even if it’s a reduced rate of growth, then she will no longer qualify for the study. Some growth is acceptable under the study protocols, but too much — even if it’s less than would have been the case without the drug — is not.
We don’t know what the odds are for these outcomes. Rebecca is part of the first p28 study ever done in children. And there haven’t been that many p28 studies in adults. There is nowhere near enough data to tell us what the odds of success are in general, let alone for her specific type of tumor, let alone for tumors of that type in patients with her age and gender and ethnic background.
If we scan sooner, at six weeks, two out of three outcomes will mean she exits the study and the tumor continues growing at its pre-study rate. One of those two would mean exiting the study even though there was some benefit, simply because there wasn’t enough benefit. The third outcome is the best case, the one where she stays in the study because it’s working.
If we wait to scan at twelve weeks, and the tumor is growing unchecked, it could very easily kill her before we get to the scan. We would spend all those hours in the car for nothing. Or she could have too much growth and be disqualified. Or the growth could have stopped.
These are the blind gambles you take, the excruciatingly difficult dilemmas you face, as the parent of a dying child. Do you find out what’s happening sooner, even though it could mean you hasten her death, when not finding out might have meant she’d live longer? Do you wait to find out what’s happening, even though that could mean you waste six more weeks, and you could have used those six weeks to try to find another treatment, one that might actually help?
And even if you look sooner, and as a result you find out that another treatment is needed, you don’t know what other treatment will actually help. Maybe none of them will. The choice is real enough, but the implied promise — that the right choice, if you can somehow manage to find or luck into it, will lead to a cure — may be, almost certainly is, an illusion.
I don’t know what choice we’ll make. I still haven’t worked out how to come to a place where I can live with whichever choice we end up making, should the worst outcome of that choice come to pass. I can’t even take refuge in not choosing, since that is the same as choosing to scan later instead of sooner.
Events will not wait for me, of course. Soon enough, the choice will have to be made, one way or the other, whether or not I’m ready, whether or not I’m prepared to live with the consequences.
The only thing I think I do know is that I wouldn’t be able to live with myself if I refused to make a choice. Right or wrong, good or bad, this is part of what I volunteered for when I became a parent. Taking that role meant taking responsibility for the lives and welfare of my children. Now Kat and I must take direct responsibility for the life and death of our child, and if we must choose blindly, we will keep her firmly in our sight as we choose.