At this point in my career, I'm well experienced at walking a family through the process of a new cancer diagnosis. From the patient side, it's a whirlwind of confusion and waiting and vagaries, but the process itself is usually the same. So from the doctor side, here is the story of diagnosing a cancer.
It always starts with one abnormal finding, something fairly innocuous, but difficult to explain. "Not sure what this is" and "We need to do more tests" are the words I tell you, and I have no evidence that it's cancer, but something doesn't sit right. I have a hunch. I go through all the millions of possibilities to explain this one finding, and in the end, I just have a gut feeling about it. "I'm not going to get a good night's sleep until I chase this down" is what I tell you, as I send you off with some labs to repeat in a few weeks, or a follow up x-ray. And two weeks later, it's still off, and maybe worse. It's a PSA of 7 or a lung nodule that's a little larger. There is a lot of mental debate, and maybe the workup starts, or maybe recheck it in another few weeks, or some more tests. The descriptions get more concerning, but still very vague: "I'm concerned that we need to rule out some serious possibilities" or "we need to take cancer off the table."
There is always that one alarming finding. Maybe the PSA comes back 157. Maybe you find bony metastatic disease. Maybe your abdominal CT reveals diffuse retroperitoneal lymphadenopathy. And if your doctor is anything like me, then maybe he throws something against a wall or maybe she curses loudly and kicks something. The language gets much more alarming. Maybe I'll be cautious and say something like, "I'm not sure what this is, but I'm really worried that this is cancer." Maybe I'll be much less optimistic and say, "At this point, it is almost certainly cancer. The only question is what type and can we treat it." Whatever words come out of my mouth, I am still guessing, because I don't have a biopsy, and I can't be sure.
There is no room for uncertainty now. I have to know, beyond the shadow of a doubt. I must have a piece of it. So I call up the surgeon or the interventional radiologist and tell them I need a stat biopsy. And normally the surgeon would say, "Screw you!" and maybe he does say that, but he readjusts his schedule, and he adds on this case, delaying or even bumping surgeries he's planned for weeks, ends up coming home late and missing his daughter's soccer game. He curses my name, but he does it because this could be cancer, and he knows the stakes.
The pathologist may get a chance at it with frozen section, where they look at it during the surgical biopsy, but more often than not, we have to wait for pathology to do their magic, and that will be 5-7 business days. And we're all waiting. Those knots and butterflies, I have them too. And so I try to keep you busy. I try to get the medical oncologist and radiation oncologist set up. I get the PET scan done. I try to keep the wheel turning so that these next two weeks of waiting can pass a little quicker. And I'm holding out hope that I am wrong, that this whole workup was a big false alarm.
The pathologist gets it and does all kinds of stains and treatments and manipulations of it, and probably they could tell me after 3-4 days that it's most probably cancer, but they know what's at stake. They have to be sure. So they keep testing it until they're sure, and then after that, they test it more to figure out what weak spots this cancer might have, where we can target therapies. They produce an exact report, but as soon as I read, "Carcinoma" then I've seen what I needed to see.
Now finally, you sit down with me and I tell you, in no uncertain terms, that this is cancer. I can tell you this because I went through many steps so that I was sure, and the pathologist went through even more steps so that she could be sure. We are sure, but you will still ask, "Are you sure?" It's not a dumb question. I asked too. And it will seem like a surprise to you, this process that you were intimately involved in, but it's always a surprise. And I am surprised too, because I was hoping so hard to be wrong. I was hoping that any number of people slipped up, and that this is one tremendous farce. And that is why I had to be sure, so that when you are sitting in front of me, crying and asking me deep, painful questions I can't answer, like "Why?" then I can I can give you the one certainty I have: this is cancer, and of that I am now sure.