What You Don’t Know Might Kill You

Like everyone else who isn't comatose, Sara Sussman had heard over and over that America has the best health care in the world. So she still can't believe what happened to her. She found a lump in her breast two days before Christmas last year, and a mammogram found something that, the radiologist told her, should be biopsied. But he didn't tell her where to do that. Sussman, then 35, asked her ob-gyn for a referral to the Johns Hopkins Kimmel Cancer Center, near her home in Maryland. She refused: "Girls your age don't get breast cancer," she said, and referred Sussman to a general surgeon at a hospital with no cancer center. Sussman instead called a New York University oncologist who had treated her father and brother for melanoma, and saw him that week. Looking at the same films that the "girls your age don't get breast cancer" ob-gyn had dismissed, he immediately spotted two tumors—both so large as to be inoperable. Sussman had inflammatory, stage IV breast cancer, which had metastasized to her hip. She has now had six months of chemotherapy to shrink the tumors, has started radiation, and is facing two surgeries.

This is not a story about medical mistakes. It is about wide disparities in cancer diagnosis and treatment. The consequence of these disparities is that although America indeed has some of the best cancer care in the world, there is no guarantee that any particular patient will receive it. Worse, in trying to find the oncologist or cancer center with the best track record on, say, stage IV bladder cancer, even the savviest patient quickly hits a wall: with a few exceptions, cancer centers treat these "outcomes" data like state secrets.

When we began asking if it matters where a patient gets treated for cancer, we were agnostic on whether disparities in diagnosis and treatment between elite hospitals and all the rest were great enough to affect survival or quality of life. After all, some tumors are so non-threatening, and their treatment so standard, that it shouldn't matter where you go; your chances are pretty good. Five years after mastectomy, for instance, 81 percent of women treated at the top cancer centers are alive, compared with 77 percent of those treated elsewhere—not a huge difference. Similarly, at Fox Chase Cancer Center in Philadelphia, to pick one top site, the five-year survival rate for patients with stage II prostate cancer is 93 percent, compared with 88 percent nationwide. "Eighty percent of cancers can and should be treated in community settings," says urological surgeon Derek Raghavan of the Cleveland Clinic. "I've seen 2,000 cases of testicular cancer," whose treatment is straightforward, "but that doesn't mean I give better chemotherapy than someone who has seen 30." At the other end of the severity spectrum, Ted Kennedy was treated for glioblastoma at Duke Comprehensive Cancer Center, one of the nation's best. He lived 15 months after his diagnosis. The median survival for glioblastoma is 14.6 months. Against some cancers, even the medical gods are helpless.

But then experts drew our attention to the millions of cancers in the middle—those that are neither hopeless nor straightforward (or as straightforward as cancer can ever be). After we interviewed dozens of oncologists, pored over published papers, and obtained outcomes data that cancer centers have never before made public, it became clear that for these cancers there are indeed significant outcome differences depending where you are treated. "There is clear documentation that not all Americans get the best cancer care, even though it is available," says cancer surgeon Stephen Edge of Roswell Park Cancer Institute in Buffalo, N.Y. "We definitely have wide variations."

First, there are differences between the nation's top cancer centers and the community settings—local hospitals and oncologists in private practice—where 90 percent of cancer patients are treated. Five years after surgery for prostate cancer, for instance, 72 percent of men treated at leading hospitals are alive, compared with 62 percent of those treated elsewhere. Scrutinizing data from specific cancer centers reveals even greater gaps. Five-year survival for stage IV prostate cancer is 71 percent at Fox Chase, for instance, but 38 percent nationally. For stage IV breast cancer, the respective figures are 28 percent and 19 percent—an almost 50 percent edge. For stage IV cervical cancer, five-year survival is 33 percent at the Cleveland Clinic vs. 16 percent nationally. Remarkably, the quality-of-care gap between elite centers and community settings doesn't reflect who has the newest, coolest multimillion-dollar machine, in which case one could forgive small community hospitals for lagging behind. Instead, it comes down to such basics as experience; to getting the diagnosis right; to whether doctors address diet, exercise, and psychological health; to whether doctors routinely test tumors for molecular markers that can guide therapy; to whether care is coordinated or haphazard; to how well doctors monitor patients—after surgery, radiation, or chemo "got it all"—in order to minimize the chance that the cancer will recur. And it reflects a knowledge gap. Because so many doctors don't seem to know that breast MRIs are influenced by the menstrual cycle, says oncologistJulie Gralow of the Fred Hutchinson Cancer Research Center in Seattle, about 15 percent of the diagnoses for which she provides a second opinion are wrong.

Second, there are differences among the top cancer centers. To take one example, at Memorial Sloan-Kettering Cancer Center in New York, slightly fewer than 40 percent of patients operated on for esophageal cancer are alive five years later, compared with about 30 percent for other top hospitals (and just 10 percent for other New York City hospitals). Even at the elite cancer centers, surgeons differ in their skill at operating on a prostate that has been ravaged by radiation, and doctors differ in their ability to manage the side effects of chemotherapy. These gaps affect who will become one of the 562,000 Americans who will die of cancer this year.