When you are suddenly thrust into the medical world, unwillingly and without any kind of road map, you are surrounded by poorly marked turns, meaningless abbreviations and the sudden shift in the dialect. The Wellness Center is usually about having lost one’s “wellness”, a word used only in the medical world, and not by real people.
Pressed to make decisions that may change your life, for the better or worse, you can be confused by those clever new words, some from the marketing people (see above) and others from the clinical side. It is critical to understand how familiar words get reworked to explain new concepts. Such explanations rarely reach patients, who are numbed and deafened after a shocking diagnosis. And in the medical “new-speak”, those same patients may be told that this is the time in which they must take charge of their health, and make wise decisions quickly and correctly. I find this a cynical and self-serving approach, as rarely is any real education offered in the language of the patient.
In kidney cancer, we have been blessed with new drugs these past eight years, but have no clear way to determine which of these agents might be of benefit to any of us. On top of the shock of diagnosis, the patient is thrust into a guessing game. Even the doctor is forced to play along, and often neither party knows the rules or the chances to win. The doctor may recognize the vocabulary used in this new guessing game, but the patient does not. Words which have meaning in day to day life don’t work the same. Even some of the goals of the game are unclear to the patient. Wait! You probably think that being cured is the goal. you
For example, we patients think that “progress” is good, but that is not true in cancer. Progression is the goal of the cancer, so Progression Free Survival (PFS) measures the time between treatment and when the cancer is on the visible move again. The word “visible” is important here, as that is a reminder that cancer does not just start at a size or style to match the sensitivity of imaging. X Rays cannot see things as small as a CT scan can. Bone scans see bone mets better than other scans and so on.
In reading clinical trials, you will encounter “durable” to explain how long a median PFS can be. It may be described as remarkably durable, but in the pre-patient world, we would think that is pushing into years and years. In reality is may be 15- 18 months. We happily grasp at any more months than the non-treatment reality may be, but be aware of your and your doctor’s expectations in durability.
“Durable response” is surely what we want, but that is not translated to a cure, which might be the patient’s interpretation. When you hear that, do ask for clarification, “How long does that response last? What do you mean by ‘durable’? What do we do after the duration of response comes to a stop?”
Having a firm grasp of this term and all others is an absolute necessity, and even if that is hard–in the real sense–it will be worth it to you. You will have greater understanding of the treatments, the disease process, and a bit more sense of where you are.
More on these topics later, but do track the language, and remember than you still speak the old language. At the very least, be ready to question anything that has that new dialect sound to it!