This is sad: the state of Texas has had to take custody of a 12 year-old girl with Hodgkin’s lymphoma after her parents refused to proceed with her radiation treatment. More details are provided in a series of articles from the local Corpus Christi, Texas newspaper; it appears that Katie Wernecke’s family believes that her Hodgkin’s is in remission, and thus that she doesn’t need any more treatment. Additionally, the family appears to have read enough to believe that treatment of Hodgkin’s lymphoma without radiation is possible, and is furthering this as justification for their decision to decline radiation. Given that this information is from the news reports I’ve been able to find, I’m sure that it’s somewhat of a simplification, but it does appear to form at least the core of the family’s argument with Katie’s oncologists.
Whatever their arguments turn out to be, as a pediatric oncologist, there are two truths that guide most of what I do in the clinic: first, the achievement of remission doesn’t mean that the treatment so far is enough to prevent relapse, and second, there is a stark difference between what we know to be true and what we suspect may be true.
In terms of the first truth, the best example is that of the most common malignancy in pediatrics, childhood acute lymphoblastic leukemia (ALL). With certain treatment regimens, we’re able to cure nearly nine of ten kids with ALL. With reasonably rare exceptions, every child with ALL is in remission after the first month of treatment; one of my favorite conversations with families is when I get to go in and tell them that their child has no evidence of residual leukemia. That being said, we know — with decades and decades of the best data that could possibly be gathered — that if we were to stop after that month, almost every single one of those children would relapse, and relapse soon. For that reason, we continue on with an additional one to two years of therapy, therapy which includes additional chemo, and in some cases radiation to their brain and spine. Again, this treatment isn’t us oncologists just making a random decision about what to do, but rather is supported by decades and decades of data that tell us that stopping treatment any sooner than that, or omitting parts of that therapy, lead to unacceptably higher risks of relapse and death. (An important adjunct body of data also informs us on the importance of completely dealing with the leukemia the first time — relapses that occur earlier are much, much more likely to be untreatable and lethal.) While this example involves childhood ALL, the same data exists for most every cancer we deal with, and certainly exists for Hodgkin’s lymphoma.
In terms of the second truth, one of the reasons I went into pediatric oncology is fact that most everything we do is guided by clinical data that supports its efficacy. Before adding chemo drugs to treatment regimens, we study them (first in cells, then in lab animals, and finally in patients); before taking parts of a treatment regimen away, we similarly study the alternative regimen to make sure it’s safe and doesn’t compromise our success rates. And here’s where there is a kernel of truth to what the Wernecke family is saying — there is currently a study being run by a national pediatric oncology consortium to examine whether there is a select group of Hodgkins lymphoma patients in whom radiation can be omitted from their therapy. But here’s why it’s just a kernel of truth, and not the whole truth: the hypothesis of the study contends that it’s only the truly lowest of the low-risk patients who could be cured without radiation, and in fact, an intermediate-risk arm of the study had to be closed because it was clear that the patients were doing worse (read: more early relapses). And thus, while pediatric oncologists believe to be true the fact that there’s a subset of lower-stage Hodgkin’s patients who don’t need radiation to cure them of their disease, we also know to be true that with the chemo medicines we have today, higher-stage patients require radiation in order to give them any chance of a cure.
Again, this is sad, mostly because the family and the oncologists weren’t able to come to a consensus that acknowledged the sometimes-bad side effects of treatment for a cancer that is certainly lethal without effective therapy. Hopefully, where the doctors haven’t been able to do their part to act in Wernecke’s best interest, the courts will, whatever the facts of her diagnosis are and whatever the outcome of the court hearing next week.