It can be daunting to begin the ketogenic diet if you believe that there are better answers elsewhere. As one of my clients stated, “You come up against this wall of experts and you have to believe that they know what they’re doing.” While such a perspective is understandable, the experts’ certainty is not a guarantee of your success, however you have chosen to define the term. It’s not even an indication that there is true consensus among the experts in their own field. (I learned that one the hard way.) What this means in the real world is that you choose your own path and deal with uncertainties as best you can. This is the trade-off you have to make in exchange for empowerment and self-advocacy.
After we were hit with the devastating news of the utter failure of Raffi’s initial chemotherapy protocol, the so-called “gold standard” treatment for his tumor type, my husband and I were reluctant to simply go along with any future prescribed treatments. So of course we were cautious when his oncologist stated that radiation now was his only option. We knew that irradiating the thalamus of a six-year-old child was a last resort, given that it would doubtless degrade and then stall completely Raffi’s executive functioning and expressive language. Despite that, we made the long trip to the pediatric hospital to discuss this option further. When we arrived, the same oncologist then told us that the radiologist was unwilling to proceed with this treatment because the tumor was too large and the margins were too infiltrated. Without missing a beat, he then suggested that we start Raffi on a new chemotherapy drug, one he had previously mentioned as not being effective for our son. Two strikes!
By this point, a year and a half into this journey, I had joined several parent forums and knew that no one was having success with that particular drug. Add that to the statistics indicating that Raffi had at least a 5 percent chance of developing leukemia as a result of this drug (possibly even more given that he had a genetic anomaly, Poland’s syndrome, that already put him at risk of developing the disease). When I expressed my concern about sparking a new cancer, the oncologist’s reply (which I can only assume sounded reasonable to him) was, “But it’s a treatable form of leukemia.” Strike three! It was obvious to us that Raffi needed a new primary oncologist.
I composed a short paragraph describing Raffi’s situation and emailed it to all twelve members of the Pediatric Brain Tumor Consortium, an elite group of pediatric oncology specialists practicing at hospitals that were deemed the very best at treating his disease. Only seven of the twelve members offered us the courtesy of a reply. Remarkably, only two of them gave us the same recommendation, the drug that Raffi’s oncologist had insisted was his best option. The other responses ranged from a blunt “Let him go” to the most aggressive surgical option possible.
So where does “consensus” fit in? Well, obviously, it doesn’t. When you hear a phrase like “tumor board consensus,” what you really need to understand is that this so-called consensus may, in fact, be the opinion of just one person, especially if that person has the highest status and most influence and the other members of the board are silenced. Since the board needs to present a unified front, you will never know what the dissenters think. This is yet another reason why I urge everyone to seek a second and third opinion, even if you like your team or fear that you may offend them. Get over it. Second opinions are part of their world. Without a doubt, they themselves have provided second opinions that are not in keeping with another hospital’s findings. Of course, conflicting opinions put you in the position of having to decide which way to turn. But that’s your right—and your responsibility—if you want a say in your health care decisions.