The following essay by James O. Armitage, MD, is excerpted from The Big Casino: America’s Best Cancer Doctors Share Their Most Powerful Stories, which was co-edited by Stan Winokur, MD, and Vincent Coppola and published in May 2014. The book is available on Amazon.com and at thebigcasino.org.
The first thing I say to a new patient: “You need to know who works for whom around here. I work for you. Not the other way around.”
I’ve spent more than 30 years as a researcher at the University of Nebraska Medical Center, specializing in lymphomas. In 1983, I founded the Center’s Bone Marrow and Transplant Program. Today, it’s one of the busiest in the world, with more than 4,000 transplant procedures performed. Despite the numbers, so many of these patients have stayed with me because of who they are or what they’ve taught me.
In the 1990s, a successful businessman in his mid-50s was diagnosed with mantle cell lymphoma (MCL), one of the rarest forms of non-Hodgkin lymphoma. In fact, we’d just figured out there was such a thing when he showed up. He’d had chemotherapy, went into remission, but soon relapsed. I gave him an alternate form of chemotherapy that put him into remission, and did a bone marrow transplant, an autologous procedure, using his own stem cells.
He was in remission for a brief period, and the disease recurred. This time it was very aggressive. He had huge tumor masses on his back and lots of cancer cells circulating in his blood. At the time, MCL patients—some 6% of all non-Hodgkin cases—survived perhaps 3 years.
As it turned out, he had a matched sibling donor, a brother. An allogeneic stem cell transplant was a possibility, though in my view, it was an exceedingly long shot. We had a long talk.
“I feel really good about this,” he told me.
“I don’t think it’s a great idea,” I said. “You have other medical issues. There’s the possibility of graft-vs-host disease. You’re older than I think is safe to do it.” What I didn’t say, but I was definitely thinking: It’d be easier to smother you with a pillow. He’d die and it would be a bad death.
“Nope, I feel right about this,” he insisted. “I’m going to do it!”
I believe a physician gives his or her best advice. If a patient wants to do something that’s not illegal or immoral, the physician is obligated to do it. If not, he needs to refer the patient elsewhere. The first thing I say to a new patient: “You need to know who works for whom around here. I work for you. Not the other way around.”
So we went ahead. And it was the smoothest allogeneic transplant ever. He never had graft-vs-host disease and promptly went into complete remission. This was about 18 years ago. We became good friends, but that didn’t stop him from sending me these little notes: “You know, Jim, it’s now been 5,814 days since my transplant….”
You never know about these things. Thinking you know the future and what’s always best for your patients isn’t a safe thing for physicians to be doing.
Taking Care of People, Not Diseases
In my lifetime, we’ve gone from not understanding lymphoma very much at all to understanding it a lot. Progress has been incremental, but it turns out lymphomas are among the cancers most responsive to therapy. So my patients almost always get better and very often are cured. I can’t help but remember the ones who didn’t make it. One year later, or 10 years later, and it could have turned out differently.
After medical school, I spent 2 years in private practice in Omaha. I learned that physicians are supposed to take the patient’s side. I came to appreciate what helped referring physicians—what they considered friendly and unfriendly in a research program. Doctors are just like everybody else. There are nice ones and less nice ones, smarter ones and less smart ones. You treat people the way you’d like to be treated.
Before a patient gets to me, they’ve seen other physicians. Maybe they’ve heard, “How lucky you are to have gotten Hodgkin!” I’m very anti-that. What they meant was, “Isn’t it great you don’t have pancreatic cancer?” True. If you have to choose between the two, Hodgkin is much, much better, but you’re still going to undergo unpleasant tests to figure out where it is, you’re going to have unpleasant treatments that can have long-term effects, and then after you’re well, you’re going to spend each day worrying if the thing is going to come back and kill you. This is not a great deal.
The line I take is, “If it’s such a great deal, he can have it!” It’s wise to remember the patient’s position when we talk to them. We take care of people, not diseases.
Living Life to the Fullest
I was born in Hollywood, but grew up in the Midwest, in Kearney, Nebraska, probably one of the few people in the United States who can make that claim. My dad was a postal worker. As a kid, I spent a lot of time with a bunch of illnesses, one of which might have been tuberculosis. When I was 12, one of my grade-school classmates, a boy named David, died of leukemia. I guess these things influenced me, although at various times I wanted to be a biologist, a game warden, and a chemist.
I’ve mentioned the amazing advances we’ve made in treating lymphoma, but the truth is, things never advance fast enough if you have a patient who can’t be fixed with what you know right now. A few years back, a man from Boston—maybe the smartest person I’ve ever known—showed up. He had all sorts of important friends; a famous actor/comedian accompanied him on his first visit. He’d been referred to me because we were one of the first to do bone marrow transplants. He had this bad kind of lymphoma—peripheral T-cell—that’s rare and doesn’t respond well to treatment.
He seemed a good candidate for a transplant. I gave him chemotherapy; it wasn’t successful. Another approach using radiation did put him into remission. I did a transplant and he had unbelievably hard complications. He had terrible toxicity; his skin fell off like a burn.
He survived, but it was touch and go. Three months after the transplant, the lymphoma returned. At this point, he was losing his enthusiasm for my ideas. I was too. We finally tried interferon, which seemed the best of our choices and one he could imagine taking. He went into remission in 2 or 3 weeks.
Here’s this ultra-successful, incredibly rich, driven guy, who worked 80 hours a week. He’d spend part of the week working in Europe, then fly back: an amazingly intense person. In retrospect, he was well for 5 years. He fell in love, got married, and did the things he wanted to do.
His disease returned and he decided he didn’t want to pursue more therapy. I really do believe he lived more in the 5 years after diagnosis than his 50-odd years before.
I think he would say that. ■
Dr. Armitage is the Joe Shapiro Professor of Medicine at the University of Nebraska Medical Center, Omaha. “I Work for You” is excerpted from The Big Casino with permission from the book’s publishers, Stan Winokur, MD, and Vincent Coppola. Additional essays from The Big Casino will be published in future issues of The ASCO Post.
