Beating the Odds
Don S. Dizon, MD, FACP
10 Mar 2012 10:47 PM
I have to admit it. Even today, I find interpreting statistics for patients very difficult; not because I don't understand the concept of relative and absolute risks, hazard or odds ratios, or survival rates. It's because in the end, they do not apply at an individual level. Too often in the course of a conversation about treatment options, I find myself discussing options, studies, and results—and ultimately, I become cognizant of that glossy-eyed look in patients, which is usually followed by the same question: "So—what should I do?" It's when I take a step back, provide an overview, and bring them back—once, twice, or even a third time for the same discussion if needed.
There are no guarantees in the treatment of cancer. Some patients will survive, some will not. As physicians, our goal has been to better understand the natural history of disease and in so doing, devise ways to alter its course. This has led to the search for answers, to trials, and to proof—of both benefits and of risks. I've built my career in part on the search for novel treatment strategies. But at the end of the day, there are just no guarantees.
I found myself thinking about this when I saw a patient of mine—one that has been with me for almost six years. We first met after she had been diagnosed with stage IIIc ovarian cancer. At that time, someone very close to her had died of ovarian cancer—but she had accompanied her when the diagnosis was first made, to clinic and to infusion unit visits, and was with her at the very end of her life. Thus, in the beginning, my patient was terrified of the diagnosis because she knew first-hand what her odds were, that the odds she would remain cancer-free following surgery and chemotherapy were not good, and that she too, would likely die of ovarian cancer.
We talked about treatments, statistics, and novel therapies in clinical trials. She opted to participate in an adjuvant clinical trial and after five months of treatment, I declared her to be in remission. I saw her every three months for the first three years (both of us expecting that someday she would relapse), then every six months to year five, and now I see her once a year for follow-up. Every time I see her we smile because she has done so well. Still, it is now almost routine that at the end of our visit, she asks the same question: "Why me? Why did I beat the odds?"
While she is not the only person in my practice to remain in remission years out from adjuvant treatment (like most, if not all of us, we each have long-term survivors of advanced cancer in our practice), she reminded me of how much we do not know in oncology.
I wonder if our path to personalized medicine should not only focus on the pathogenesis of cancer—on genetic mutations, oncogenes, and upregulated pathways, in search of targets. Maybe we should also devote some attention to understanding the biology of good prognosis; that is—the biology that allows for long-term survivors of cancer. For example, why does one person with Stage IV triple-negative breast cancer survive disease-free for years, where statistics tell us the vast majority do not? Beyond the identification of prognostic factors, what can these long-term survivors tell us about the human body-tumor cell relationship?
It begs the question—what do these long-term survivors of advanced cancer know that we don't? I know a lot of people fighting cancer who'd love to find out.
CommentsNumber of Comments: 4
Tuesday, March 13, 2012 11:33 AM
Don, you capture this issue so well in your blog. Here are a few of my initial reactions:
- During my training, after flailing with some of these conversations, I developed a sort of "spiel" that I was happy with. That was a gap strategy--real improvement came when I began to learn how to tune into my patients (and families) and adapt information to their needs.
- At MD Anderson Cancer Center, the Institute for Personalized Cancer Therapy has pursued an "unusual responder" program . This may be the sort of thing you are calling for.
- I enjoyed sharing your blog on twitter--having found it in the first place via @ascopost. Within 5 minutes of retweeting the link, several others retweeted the story too (and perhaps others read and enjoyed it).
Tuesday, March 13, 2012 1:05 PM
Dear Mike, Thanks for sharing your thoughts on this. I think the MD Anderson program on the "unusual responder" is precisely what I was talking about. Any chance we have to "personalize" the statistics would be a welcome one. Your message of adaptation is an important one; I think all of us have a way of discussing the information, but it is almost an art in oncology on learning to listen and read your patient in an effort to tailor the message to suit the situation. No matter how much training in fellowship or how many books are read, the practice of oncology is one that can only be learned through immersion.
Friday, March 16, 2012 4:48 PM
Try cutting and pasting and putting this in your browser. I tried to enter the link but couldn't I belong to The Insititute of Noetic Sciences and they provide a fascinating amount of interesting literature on this subject. As you say we physicians have been indoctrinated with statistics and guidelines and often the patient doesn't fit our nice neat world. I have no intention of abandoning the science that has taken us so far but I am not sure it will explain the unusual responder or spontaneous remission.
Saturday, March 17, 2012 1:55 PM
Hi James- Thank you for the link and I am happy to see you engaged here at ASCO! Best to you, D