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an online version of the magazine Fall 2007
Features
Judgment Day  
Ronald Davis, 39, is one of six patients awaiting word on a Tuesday in September.

  Long a virtual death sentence, pancreatic cancer remains one of medicine’s most unforgiving monsters. Yet every Tuesday, a team of 30-plus experts here converge over a few desperate patients who come from all over the country for life-changing second opinions.

By Ramsey Flynn
Photos David Colwell

 
 
 

Precisely 30 seconds after entering the tiny exam room and greeting each of the seven family members newly arrived from Arkansas, surgeon Marty Makary gently drapes his arm over the shoulder of James Perry and spells out the verdict.

"Forgive me if I’m not addressing all of you at the same time here," Makary begins as he surveys the group. "It’s a small room." He pauses. "So," he says, now looking directly into the eyes of his patient, "it looks like this is a very resectable tumor."

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Top: Seasoned surgical nurse Mary Hodgin pulls it all together. Bottom: During orientation, patients follow along with printed materials.
Boom, just like that. The patient’s face doesn’t register the news right away, and those of the two daughters sitting behind him betray only the most cautious smiles. But even as they try to take in the new reality, Makary is already outlining a procedure. "This is a pretty standard operation that we’ve perfected at this hospital," he says. "We’ve done more of these operations here than any other hospital in the United States."

James Perry blinks. This is not what he was expecting. Of course he’s a fighter at heart, a quality that has carried him through two heart surgeries and decades of diabetes. But he’s 80. He had accepted the diagnosis of pancreatic cancer weeks ago. When he asked those first doctors about a surgical option, they told him no responsible surgeon would even attempt it with a man his age.

Well, it had been a good life, Perry figured, as he prepared to close out his earthly affairs. Then his adoring daughters started working the Internet, and the family of RV enthusiasts soon found themselves in a convoy of four spacious units on a pilgrimage from Arkansas to Baltimore in search of new answers.

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Joel Schorr, a 62-year-old psychologist, tunes into the briefing.
The answer they got remains the exception. Even as the Perry family was getting good news, another family in a room just feet away was receiving the opposite verdict, the prevailing verdict: That patient’s cancer had spread. That patient was unlikely to live long, but the team could slow the monster down and ease her pain.

Nationally, nearly 43,000 people will be diagnosed with pancreatic cancer this year. Fewer than 2,200 of them will still be alive five years from now. That’s 5 percent, just one of the bleak figures reliably trotted out under gloomy headlines every time a major figure like Patrick Swayze gets the dreaded diagnosis.

Five percent alive at five years. No one’s okay with that, and a passionate group of physicians here is digging in for a bigger fight. They think they’re on to something with a series of new protocols, and the early results are backing them up. Multidisciplinary. The term is now so universal throughout Hopkins Medicine that it’s already got its own shorthand: "multi-d." In ramping up their game, leaders of the pancreatic team have decided to take the multi-d philosophy one step further. In a pilot program now entering its third year, the group brings together up to 30 of their top specialists in a single conference room, where they drill down through layers of details on a select group of patients—on the same day, at the same time, with each of those patients on hand for definitive answers. More times than not, each of the patients gets what is essentially an authoritative up-or-down decision.

The weekly rite unfolds every Tuesday.

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Top: Surgeon Chris Wolfgang weighs in on a challenging tumor. Bottom: One of six patients’ radiology scans lingers on the screen.
The six patients gather in a sequestered meeting room in Hopkins’ Weinberg Building. Each patient, typically accompanied by one or more family members, files into the room just before 9 a.m. It’s windowless but brightly lit, anchored by bookshelves filled with cancer care materials and coffee, juice, bagels, and muffins.

To the untrained eye, it’s hard to separate the patients from their loved ones. As is so often the case with fast-moving pancreatic cancers, the patients on this Tuesday morning look surprisingly healthy, the youngest 39; the oldest 79. Their backgrounds are striking. One is a 62-year-old psychologist from upstate New York, accompanied by his wife, also a psychologist. Another is a 55-year-old cardiologist from California. A 79-year-old woman has flown in from Manhattan with her engineer husband and two grown children, flanking her at mid-table. An especially robust-looking 77-year-old senior insurance executive in a bright yellow cardigan sits at one end of the table with his wife at his side. A wiry 39-year-old warehouse worker and father of three sits along a wall next to his spouse, whose fretful advocacy has propelled him here in record time. A strikingly handsome young member of the diplomatic community is seated solo; his visit was preceded by a request that no one in his office be allowed to know the nature of his visit to Baltimore. Most of the faces in the room appear etched with worry, some with reddened eyes. Others are more poker-faced. All of those with confirmed pancreatic tumors are here on a quest for surgical resection, a complete removal of the life-threatening disease that has taken root inside them.

Promptly at 9 am, according to the schedule, a series of orientations unfolds, starting with a quick hello from clinic director Joseph Herman, a tall and ebullient radiation oncologist whose youthful looks would easily fit into a Norman Rockwell rendering of a matriculating Eagle Scout. "I realize all of you are anxious today," he tells the group. In the first of many attempts to strike the right balance in managing the expectations of people delicately perched between hope and despair, Herman’s tone finds confidence in one essential truth: All six patients will get authoritative answers by the end of the day. "Our goal is to put you on the right path," he says.

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The team barely slows down for lunch during the midday conference.
With the clinical group’s mission so boldly declared, a high-stakes clock begins ticking.

The next doctor provides context for the pancreatic group’s research mission. Her difficult but essential message is that, while each patient may opt to withhold personal case data and tissue samples, sharing the info is always welcome in an academic medical center. Another pair on the team outlines the value of participating in their national tumor registry, "the largest known database of its kind." They’re followed with briefings from a nutritionist, a surgical nurse, and a social worker describing a menu of available resources. Though each orientation is held to under 10 minutes, the net effect is an hour-long flood of information. Many in the room follow along with handout materials.

Near the middle stage of the orientation, a veteran surgical nurse with a seasoned wisdom acquired from her 12 years on service—and a personal history of aiding her late husband through a five-year leukemia saga here—pulls it all together in the fashion of the most kindhearted of drill sergeants. "This is all done in the hope of finding a cure for cancer," says Mary Hodgin, "connecting the dots, and putting me out of a job."

More than a dozen times in each of the clinic’s three years, patients’ death sentences have been dramatically reversed to clemency cases.

The moment of self-deprecation elicits quiet chuckles from an otherwise terrified room. After a quick recitation of the nearby dining and restroom options, nurse Hodgin closes on a note that could cut either way. "For those of you who are surgical candidates," she says, "I look forward to meeting you again this afternoon."

Sitting on the edge of her exam room chair shortly after 11 am, Linda Mercier is a lively 56-year-old first grade teacher from Virginia who could easily double for actress Susan Sarandon. A self-described anxious sort who sometimes gets herself worked up, she suffered a series of heart flutters after the first day of school in August and wound up in an emergency room awaiting word on her heart scan.

"Your aorta’s fine," the ED doctor told her, "but there’s a little tiny speck on your pancreas. It could just be something on the film, but we need to follow up."

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Top: A light moment, minutes before Linda Mercier learns her fate. Bottom: Listening, with husband Bill, as surgeon Barish Edil makes the prognosis.
Mercier’s grandfather had died of pancreatic cancer. Knowing its cruelties, she was all about following up. With her primary care doctor unimpressed by the "speck," Mercier pressed on of her own volition. Feeding her late-night worries with a storm of alarming data from the Internet, she tracked down a reputable oncologist in Norfolk who told her he thought the lesion—about the size of a pencil eraser—did not display any telltale signs of a dreaded adenocarcinoma. Yet. He also told her that if it were he, he "wouldn’t sit around for three months."

Mercier was a step ahead of him. She’d liked the information she’d picked up online about the Hopkins pancreatic multi-d clinic. She saw that she could be seen by many pancreatic experts in one day. The Norfolk doctor thought that was a smart next stop. In the weeks leading up to today’s all-day appointment, Mercier says she has tormented herself with the abundance of worst-case scenarios available online, sometimes lapsing into crying jags in the wee hours. She withheld the worries from her colleagues and students, whose daily presence at the beginning of classes "grounded" her.

Already this morning, Mercier had a CT scan of her pancreas converted into 3-D images and further detailed with lab samples for pathology analysis. After taking her patient history during the past hour, one doctor ventured that the lesion appeared cystic in nature, a positive indicator that will be studied by the full group of pancreatic specialists who will review Mercier’s films during the coming lunch hour.

A deeply religious woman, Mercier has maintained a steady dialogue with God asking for the strength to cope with any outcome. She loves life. She’s vibrant and active. She still fusses over her two 20-something sons. Her doting husband, Bill, whom she’s been with since the age of 15, is here by her side, talking optimistically of their travel plans back to Greece. She says she’s happy.

"If God wants me," she says, "He’s going to take me, but I’m not quite ready yet." As the clock nears 12:30, the lower-floor conference room begins filling with people in long white lab coats, flocking like doves to an urgent assembly of the Tuesday cases. The pathologist is testing the ability of his laptop to project vivid samples on the room’s screen, while a progression of attendees fishes out slices of room-temperature pizza from a stack of six boxes.

Within minutes, 22 medical professionals have gathered, exchanging spontaneous bits of small talk about families and weekend recaps. The group’s nurse practitioner coordinator, Barbara Biedrzycki—a wide-eyed and unassuming sort who choreographs these Tuesdays with a quiet efficiency—places a distinctive purple three-ring binder on the table close to where clinic director Herman will sit.

"If a patient sees three different disciplines, a lot of times they can get three different recommendations."

Close to the screen sits tousle-haired pathologist Ralph Hruban, distinguished as one of the most oft-cited researchers in modern medical science. Posted at a podium in the corner behind Hruban is the generously mustachioed Elliot Fishman, prized for his mastery of the most high-definition 360-degree CT scanning technology available. He’s rolling through a series of pivotal slides that sharply display key layers of the patients’ torsos, images that virtually pop off the screen even before the lights are dimmed.

Newly arrived in the room is rising oncologist Daniel Laheru, who has logged years at the side of cancer researcher Elizabeth Jaffee in establishing human trial protocols for her experimental pancreatic cancer vaccine. The quiet progress of the work is still playing out with clinic patients whose conditions make them eligible. Across from him sits a lanky shaven-headed physician with heavy dark glasses, Michael Erdek; his command of palliative care tailored to relieve the unique agonies of his patients is especially valued in those cases where the cancer cannot be stopped.

Three surgeons are in attendance, all in their 40s, all intimately trained in the finer details of Hopkins’ famed Whipple operation under the legendary John Cameron—the world’s leader in the Whipple, with 1,745 procedures under his belt as of December. His absence today is explained by his attendance to one of those very procedures on a pancreatic patient even as the lunch conference unfolds. Arrayed around the room is a series of individual oncologists, clutching folders with their fresh patient histories for when their turns come to summarize.

With all of the preliminaries dispatched by 12:46 pm, the first case unfolds, that of the 79-year-old New York woman from Westchester who became symptomatic just one month earlier, with indications that included indigestion, burping, and jaundice. New York physicians had performed laparoscopic procedures for clearing her pancreatic ducts, deploying a 5-centimeter plastic stent to prop open the most troublesome duct. The doctors there had also identified a complex pancreatic tumor entangled with the notoriously sensitive organ, which they deemed unresectable.

During her Hopkins doctor’s narrative, vivid slides of the woman’s pathology slices flash across the bright screen in the darkened room, as a senior associate to Hruban details the meaning of distinctive tissue patterns and colors. With clinical efficiency, further details unfold about the presence of "xeno-pelvic meshing" in the patient’s abdomen, along with the more clinically meaningful indicators of actual trouble.

The details of the woman’s complex case are teased apart and discussed primarily by Hruban, Fishman, Laheru, Herman, and surgeon Rich Schulick. They eventually settle on a conclusion that any ambitious attempt at surgery cannot properly remove what is clearly now a metastatic tumor that has colonized neighboring tissues. They can provide the latest protocols in radiation, chemotherapy, and pain management in a bid to extend the woman’s time with the most acceptable remaining quality of life. Much of the care can be effectively delivered in medical facilities near her home in Westchester. Group director Herman taps oncologist Nilo Azad to deliver the news after the break.

Each case presented on this particular day unfolds in similarly disconcerting fashion. The Tuesday clinics do, after all, typically specialize in second opinions, virtually guaranteeing the most desperate cases. Some of the patients are actually assessed to be in a more advanced stage of the cancer than their previous doctors had described. A lucky few every year are told the previous studies were simply incorrect; they actually have no cancer. Then there are the cases where the cancer is confirmed, but it can be surgically removed when they were told otherwise. The Hopkins team approaches each presentation individually, zealously working every angle in search of a save. More than a dozen times in each of the clinic’s three years, patients’ death sentences have been dramatically reversed to clemency cases.

One of those was Patty Gardon, a 43-year-old nurse and mother of two from New York who was deemed unresectable after a surgical team there had operated for six hours, backing out and closing her up after finding the tumor deeply entwined with the critical portal vein. "It’s in God’s hands now," the chief surgeon declared to her waiting family members. But like many terrified patients with too much to live for, Gardon fought back and self-referred to Hopkins.

After new rounds of chemo and radiation, Hopkins surgeon Rich Schulick told Gardon she was all-systems-go for surgery. That was more than two years ago, and Gardon is now perfectly evangelical in her praise for the multi-d group.

Another was the Arkansan James Perry. After his multi-d visit in September, he underwent a successful surgical resection by Marty Makary in October. He returned home to recuperate in early November, was re-hospitalized with wound infection there for two weeks, and is now deemed "cured." The man who’d been given a death sentence just months before is regaining his strength daily, as he rejoins his family in mobile home caravan adventures. At last report the Perrys are planning a new pilgrimage to Florida.

On the Tuesday when Linda Mercier’s case is taken up in the group conference, presenting oncology fellow Jing Zeng’s voice slips from the normal clinical monotone into upbeat. She describes the schoolteacher as an active exerciser who occasionally has panic over vascular issues, partly owing to a family history of aneurysms. One of those episodes triggered the discovery of a lesion in her pancreas, the sharp CT scans of which are now parading across the screen.

In stark contrast to most patient torsos presented in this room (the interior of an alcoholic patient was so thoroughly wracked with liver damage that many audibly groaned), Mercier’s abdominal organs look clear as a bell. The organ boundaries appear solid and sound, almost crisp.

Radiologist Fishman draws attention to several small lesions, the largest of which remains the size of the aforementioned pencil eraser. He notes that the lesions appear cystic in nature, with soft interiors. Zeng adds that today’s scans reflect no change in lesion size from the August images, and the patient is otherwise completely asymptomatic.

Group director Herman turns the discussion over to surgeon Chris Wolfgang, who displays little doubt over how to proceed but shares some of his analytical process out loud, if only for teaching purposes. "These are most likely multi focal side branch," he says, and adds that the so-called Sendai Criteria—guidelines for surgical decision-making determined through international consensus—can be used to determine the proper course.

The first Sendai threshold is based on lesions greater than three centimeters, Wolfgang says, "and none of these are that big." The second threshold would be the presence of a solid component to the cysts, "which none of them have," and the third threshold would be the presence of actual symptoms. "She’s not jaundiced," says Wolfgang, "there’s no pain or weight loss or history of pancreatitis, so she really meets none of the Sendai Criteria for resection."

He recommends no surgery, suggesting new scans at six-month intervals for the coming year and then, if the lesions remain stable, follow-up with an annual imaging routine. He also thinks she’s an ideal candidate for a growing clinic he conducts with about 100 patients with low-threat pancreatic cysts. It is becoming a multi-d specialty unto its own, neatly dovetailing with the interests of a growing platoon of Hopkins gastroenterologists.

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The relieved couple heads home, just before 5 pm.
Back in her designated exam room at the appointed time of 1:30 pm and knowing that she will soon receive a potentially life-changing medical decision, Linda Mercier keeps her spirits up with playful banter peppered with thoughts about her ongoing routine at the St. Matthews Catholic school. She talks of how fears of the H1N1 flu have rippled through parish life, prompting fumigation of the classrooms, liberal applications of Lysol spray and Clorox wipes, and open windows whenever the weather allows.

Even at the Sunday masses, Mercier confesses, she has taken to avoiding sips of the shared communal cup. But if she’s destined for a surgery in the near future, she chuckles, she’ll want holy water sprinkled throughout the surgical suite. "I want all those bases covered," she smiles.

In the next moment, a tall man in a white lab coat enters the room. "Hi, I’m Doctor Edil," he says, extending his hand to both Mercier and her husband. "How are you?

"What I have is good news," Barish Edil continues. "So, right off the bat, you’re not going to need surgery at this time. We sat down downstairs and we reviewed your CT scans and basically what you have is cysts in your pancreas." "Okay," says Mercier, her mouth agape. "More than one?" "Yes," says Edil, "you had one that was 1-by-6 millimeters, there may be an additional one that’s 3 millimeters.... But basically they’re tiny."

Sensing the patient might vex over the multiplicity of details, Edil briskly proceeds with the news that medical scientists are still getting to know the multiple cysts phenomenon. "There are certain criteria we use to operate," he says, "and you don’t fit any of them."

"Okay," says Mercier, seemingly hung up on the notion that she’s unresectable and still in big trouble. "All right."

"But it is something we have to survey," adds Edil.

"Okay," says Mercier, still tentative.

"With endoscopic ultrasound," says Edil, trying to read Mercier’s expression, "which is just another modality to characterize these cysts."

"What I can tell you," he ventures, "is that you may never need an operation." He says these cysts can convert to cancers in some patients, "and we don’t yet know who that’s going to be." He says the cysts can fluctuate in size over time without consequence. "I would not interpret this as ‘they developed,’" he counsels. Mercier wants to make the leap but holds back. "How do you know?" she asks. Edil explains the differences between tumors and lesions, solid cysts versus soft, declaring Mercier’s cysts "neoplasms, not cancers."

He explains the relatively easy follow-ups. "We’re not going to do anything about these unless the cyst turns solid, or if it gets to a size of three centimeters, or if there’s rapid growth, or if you get symptoms. Those are the only times when we’ll operate."

Edil then leans in closer to Mercier, signaling that he’s got her number as an obsessive worrier. "And don’t let it keep you up at night," he smiles. "I know you’re going to go on the Internet and you’re going to look this up. And it’s going to talk about cancer and how these things become cancers and things like that. You’re nowhere near that. You’re not even in the same stratosphere. If you start getting close to that, we’ll be talking way before that time."

Then, finally, an audible exhale. "Ohhhh," Mercier says at last, "Well, that makes me feel better." After Edil hands out his cards and says his goodbyes, Mercier stands and clasps her hands. "Thanks to St. Jude," she says, "my patron saint. I go to him, straight to the top."

In one of those hurried moments that he sometimes grabs between Tuesday duties, Joe Herman pauses with his administrative assistant, Joyce Schanne, clutching the entire list of all the inpatient cases he’s following and must visit. He’s got to see every one of them today, because he and his new bride are headed to their honeymoon in Australia tomorrow. He just wants Schanne to provide a simple list with all of their names and situations, so that he’ll have a handy cue card. "I dictated everybody yesterday," he says.

When Herman first arrived here from the University of Michigan in 2005 he was in awe of the wealth of expert colleagues specializing in pancreatic cancer. This was the sort of group that could fix anything if they put their collective minds to it. But where was the system that could turn them into tighter collaborators?

He was aware that other cancer hospitals were learning to tap across the disciplines in working up complicated cases—the Mayo Clinic had one service that typically required patients to spend a week in order to be evaluated by all specialists and stay at a nearby hotel. But why couldn’t all that talent be pulled together into a well-oiled machine where all of these experts could second-guess each other in the moment, with the patients on hand for questions, and with all of their data freshly acquired?

It would not only produce higher-quality decision making, Herman explains, but it’s more smartly oriented to the patient’s needs. "They get a consensus decision," he says, "as opposed to a decision made in isolation. If a patient sees three different disciplines, a lot of times they can get three different recommendations. And a lot of those, unfortunately, are going to be subjective and often different. If I’m a surgeon I have a little bit of a bias toward surgery. If I’m a radiation oncologist, I have a bias toward radiation oncology. So this sort of forces us to be up front with each other about what we think is best for the patient."

In the three years since the clinic’s launch, Herman says he and all of his colleagues have not lost sight of the question that drives them: "Are we improving outcomes?" Though the emerging data show a positive trend, they also demand formal study that has not yet gone the distance. But the data from the group’s first year turned up a key finding: Tuesday’s multi-d clinic has changed management recommendations in 20 percent of the cases they’ve taken in.

While this number includes the patients who were suspected of pancreatic cancer and found not to have it—along with those who had cancerous tumors previously deemed unresectable who can, indeed, be resected—it also includes the cases that were suspected localized or benign but subsequently found to be metastatic. The clinic has now evaluated more than 600 patients with suspected pancreatic cancer. If these numbers hold up, then approximately 120 patients will have a diagnosis that is different from their pre-clinic diagnosis.

Even in the cases where diagnoses have been changed from a suspected cancer to a confirmation of the dreaded metastatic disease, Herman says his multi-d group has observed a surprising reconciliation in most of the patients. "You can almost see a weight is lifted off their chest," he says. "They seem to be thinking ‘At least I have a plan now.’" Many times, that plan means they and their family members can avoid needless operations and chemo-radiation treatments. The disruptions would more likely detract from their remaining time without improving it.

"It’s a horrible cancer and we still have a long way to go," says Herman. "But if we can at least make the process as effortless and smooth as possible for patients" *

 
 
 
 
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