Your Medical Mind_ How to Decide What Is Right for You - Jerome Groopman [62]
Paul pressed the hematologist to translate her words into numbers: how likely, over what time frame? What are the trajectories based on a patient’s age, gender, time since initial diagnosis, and any other possibly relevant variables? And how good are the data? Paul told us that the specialist didn’t answer most of these questions precisely and closed the conversation by saying there was nothing to be done immediately except to monitor his white blood cell count even more closely. The specialist would work in conjunction with Paul’s local hematologist in Connecticut.
“I expected it would just be an informational visit,” Paul told us. “But it turned out to be much more than that.”
Paul was determined to maintain control over his care. He went back and read scientific papers about the kinds of genetic changes that occur in chronic leukemic cells that cause them to multiply rapidly and invade vital organs like the liver and kidneys, wreaking havoc with normal body functions. He went regularly to have his blood count checked and kept close watch on the results. As predicted, his white blood count rose from 10,000 to 20,000 and then reached 30,000. “The hematologist reassured me. He didn’t seem at all worried. And I felt fine,” Paul recalled. His reading on the Internet confirmed that these white blood cell counts are not routinely treated, since they do no harm. Some seven months later, sitting with the doctor, Paul learned that his total white blood cell count was now just above 50,000.
“We should begin treatment this week,” the hematologist said.
Paul told us that “I just walked in for a visit, expecting that we were just watching my blood count, waiting. No one had given me any sign that once it topped a particular number that we somehow passed the threshold. That threshold was in my doctor’s mind; I didn’t know it existed. I was totally unprepared to hear this. I had recently remarried, and I was planning a vacation with my wife.” Paul said he was “completely surprised. And this was just the first of a long series of surprises.”
Paul asked the hematologist, “Why exactly now ? What were the criteria that necessitated treatment?” He was seeking a clear and cogent rationale based on data.
“My sense is once your count doubles this quickly and goes north of 45,000,” the hematologist replied, “it’s best to begin.”
Paul bristled at the inexact nature of the response. “I felt like it was presented as if I had no choice. Of course, I could have declined chemotherapy. But then what? It was, ‘This is what you do, and by the way we are starting in three days.’ It really bothered me that the decision rules they were using weren’t apparent to me. That’s a better way to put it. They had made decisions when I didn’t even know the decision was coming. And that was that. I didn’t like it. I’m a person who spent his life studying decision making. I would like some warning, telling me, ‘We are approaching a place where I’m thinking that we may have to begin treatment,’ rather than, ‘You have three days and you are into chemotherapy.’ Because you don’t know what that’s going to mean. I read all the horror stories, blogs about side effects, how you lose your hair, you’re going to be nauseated, and you can bleed. It hit me like a ton of bricks.”
He knew from his research on the Internet that cancer centers often differed from one another in the protocols they favored. Until this point, Paul had felt in control, with a clear understanding of the plan—observation without treatment. Now the ground had shifted suddenly beneath him, and he couldn’t get his footing. The hematologist explained that he would be using the protocol recommended by the cancer center where Paul had been evaluated. The doctor gave him information sheets for each drug that he would be taking. “I knew this protocol was the gold standard; I had read about